‘3'“?! ¢ .w' ‘ {if ‘ I 2:233: an 1; ’ 3: «’3'? b was a}! gain! 1. .31 v ‘ ‘ cg ‘ .D THESIS LIBRARIES / .o*--'/' MICHIGAN STATE UNIVERSITY '- EAST LANSING, MICH 48824-1048 (“999 (320.9 This is to certify that the l dissertation entitled PATIENT PERCEPTION OF PROVIDER ADHERENCE T0 TREATMENT AND SELF -CARE STANDARDS: THE CASE OF DIABETES SELF-CARE presented by Ragnhild S. J. Bundesmann ‘ has been accepted towards fulfillment of the requirements for the PhD degree in Sociologx / F" Major PrbfesIor's Signatué W44— Date MSU is an Affirmative Action/Equal Opportunity Institution PLACE IN RETURN BOX to remove this checkout from your record. TO AVOID FINES return on or before date due. MAY BE RECALLED with earlier due date if requested. DATE DUE DATE DUE DATE DUE 6"01 c:/CIRC/DateDue.p65-p.15 PATIENT PERCEPTION OF PROVIDER ADHERENCE TO TREATMENT AND SELF -CARE STANDARDS: THE CASE OF DIABETES SELF-CARE By Ragnhild S.J. Bundesmann A DISSERTATION Submitted to Michigan State University In partial fulfillment of the requirements for the degree of DOCTOR OF PHILOSOPHY School of Sociology 2004 ABSTRACT PATIENT PERCEPTION OF PROVIDER ADHERENCE TO TREATIVIENT AND SELF-CARE STANDARDS: THE CASE OF DIABETES SELF-CARE By Ragnhild S.J. Bundesmann Diabetes is a serious and prevalent disease, for which there is no cure. Treatment consists of monitoring, counseling, and self-care. Self-care can be demanding and complex, therefore people with diabetes need training and support. Providers must teach and encourage patients to maintain the diabetic life-style and to avail themselves of diabetes self-care education. This teaching and encouragement is part of the practice guidelines of the American Diabetes Association (ADA). There is evidence that physicians do not always deliver the care according to practice guidelines, both in the area of monitoring as well as counseling. This cross sectional study investigates the relationship between provider information giving and the likelihood of the person with diabetes to practice appropriate self-care behaviors. The sample for the study came from M-CARE, a university affiliated managed care organization. The data was examined with regression studies that controlled for patient characteristics. Provider information giving regarding exercise, blood glucose monitoring and foot examination have a moderate but significant impact on those behaviors. Provider modeling of foot examination and monitoring of home blood glucose levels also have a significant effect on those two self-care behaviors. Summary indexes for provider information giving and provider modeling have a significant impact on aggregate measures of diabetes self-care. It was found that older patients tend to receive less information. The study concludes that patient self-care behaviors need to be studied while controlling for provider information giving and provider modeling of desired behaviors. ACKNOWLEDGEMENTS I would like to thank all those who have supported me during the dissertation process, particularly my committee members, Cliff Broman PhD, Tom Connor PhD, Harry Perlstadt PhD and the Dean’s representative, Lorraine Weatherspoon RD, PhD. Many thanks go to Stan Kaplowitz Ph.D. who patiently mentored and guided me through the process. I also owe William Herman M.D., MPH many thanks for sharing his TRIAD data that made the dissertation possible. Blue Care Network supported my tuition payments for the Master of Public Health and for the Ph.D.. I am grateful for the financial help. Many thanks go to my staff at McLaren Regional Medical Center who consistently encouraged me for the last seven months. More thanks go to my family, particularly our four children Evelyn, Mark, Christopher and Michael who cheered and supported me through the long study period. Most of all I need to thank my husband Herbert Bundesmann who faithfully encouraged me to finish not only the dissertation, but all the studies that led to it iv TABLE OF CONTENTS List of Tables ................................................................................ v List of Figures ............................................................................... vi Introduction ............................................................................... 1 Literature Review ........................................................................... 2 Diabetes: The disease, prevalence and treatment 2 Diabetes treatment, the sick role and physician behaviors 10 Theory of health behavior that applies to this study: The Health Belief 14 Model 21 Diabetes self-care behaviors and provider practice 34 Unresolved questions concerning provider’s practice and self-care Hypotheses ................................................................................... 37 Provider advice and self-care behavior 37 Self-care and provider modeling 38 Self-care and provider referral and information giving 41 Severity of diabetes and physician practice 43 Demographics, provider information giving and self-care 44 Methods ....................................................................................... 47 M-CARE structure and membership 47 Variables selected for this study and their measures 5 3 Coding and variable computation 62 Results ......................................................................................... 67 Sample description 67 Hypotheses testing and data analysis 73 Self care activities 73 Diabetes education 94 Disease complications 96 Demographic variables and provider behaviors 98 Discussion of the findings ................................................................. 101 Summary of self-care behaviors 101 Summary of diabetes complications and demographics 105 Data and methods considerations 106 Background variables 108 The differences in self-care behaviors 116 Effect of provider information giving 119 Implications 122 Limitations 124 Conclusions 126 Bibliography ................................................................................ 128 LIST OF TABLES Table 1: Adherence to practice guidelines according to various data sources ....... 31 Table 2: Ethnicity 64 Table 3: Descriptive summary of continuous variables ................................. 68 Table 4: Summary of self-care and provider behavior variables ..................... 69 Table 5: Missing Variables ................................................................ 71 Table 6: Logistic regression: The effect of patient characteristics and provider information giving and modeling on patient home glucose monitoring .............. 75 Table 7: Logistic regression: The effect of patient characteristics and provider information giving and modeling of foot care on foot examination .................. 77 Table 8: OLS regression: The effect of provider information giving and patient characteristics on exercising .............................................................. 79 Table 9: Logistic regression: The effect of patient characteristics and provider information giving on obtaining the flu vaccination .................................... 81 Table 10: Logistic regression: The effect of patient characteristics and provider information giving on retina screening in the last 12 months ......................... 83 Table 11: OLS regression: The effect of patient characteristics and provider information giving and modeling on office based self-care behaviors ............... 86 Table 12: OLS regression: The effect of patient characteristics and provider information giving and modeling on home based self-care behaviors ............... 88 Table 13: OLS regression: The effect of patient characteristics and provider information giving and modeling on aggregated self-care behaviors ................. 90 Table 14: OLS regression: The effect of patient characteristics and diabetes education on diabetes self-care behaviors ................................................ 92 Table 15: Log regression: Receiving information and use of diabetes education. 94 Table 16 Summary of self-care and impact of various factors ........................ 95 Table 17 The impact of patient characteristics and complications on seeing a specialist ....................................................................................... 96 Table 18: The impact of demographics on provider information giving ............. 99 vi TABLE OF FIGURES Figure 1: Key concepts and definition of the health belief model ..................... 20 Figure 2: Proposed relationship of patient characteristics, physician practice and 42 self-care behaviors ........................................................................... vii PATIENT PERCEPTION OF PROVIDER ADHERENCE TO TREATMENT AND SELF-CARE STANDARDS: THE CASE OF DIABETES SELF-CARE Introduction Diabetes is a serious and prevalent disease, for which there is no cure. Treatment consists of monitoring, counseling, and self-care. Self-care can be demanding and complex, therefore people with diabetes need training and support. Providers must teach and encourage patients to maintain the diabetic life-style and to avail themselves of diabetes self-care education. This teaching and encouragement is part of the practice guidelines of the American Diabetes Association (ADA). There is evidence that physicians do not deliver the care according to practice guidelines, both in the area of monitoring as well as counseling. This study aims to explore the relationship between provider information giving and the likelihood of the person with diabetes to practice appropriate self-care behaviors. A central question is the following: to what degree does failure of the provider to offer appropriate information translate into patients failing to practice appropriate self—care. Diabetes: 1119 disease, prevalence, a_nt_I_ treatment Diabetes disease process and complications This section describes diabetes, specifically type 2 diabetes, the disease process, complications, prevalence, and treatment. The goal of diabetes treatment is glycemic control. Glycemic control is achieved through exercise and diet, and if needed, pharmaceuticals to help achieve blood glucose control. Diabetes is comprised of a group of metabolic diseases that are marked by elevated blood glucose levels. It is estimated that about 17 million Americans have diabetes (V inik 2003). Type 1 diabetes in the vast majority of cases is due to pancreatic islet B-cell destruction and the absence of insulin production. Therefore, people with type 1 diabetes always require insulin for survival. The onset of type] diabetes generally occurs before age 30 and is acutel (American Diabetes Association [ADA], 2001). This study has excluded people with type 1 diabetes and focuses on people with type 2 diabetesz. Type 2 diabetes is the most prevalent form of diabetes and results from insulin resistance with an insulin secretory defect. A person with type 2 diabetes may produce large amounts of insulin but there may be defects in insulin action, or diminished tissue response to insulin (ADA 2001). ' Most people who develop type 1 diabetes are hospitalized for insulin administration within days of onset. 2 There are other forms of diabetes, such as gestational diabetes and forms of diabetes caused by malnutrition. This investigation is limited to type 2 diabetes. Type 2 diabetes has a gradual onset and it is estimated that about 2.4 % of the US population have type 2 diabetes but have not been diagnosed (Acton 2003). In the early stages of diabetes, diet together with increased exercise can restore blood glucose balance. As the disease progresses, oral medications that stimulate insulin production and/or decrease insulin resistance may be needed in addition to the dietary and exercise treatment. As the disease progresses insulin resistance increases, the pancreas produces more insulin and at some point the person with diabetes may need to supplement with insulin injections. The injected insulin is supplementary to help achieve blood glucose control. While a non-diabetic adult produces about 20 to 30 units of insulin on any given day, a person with type 2 diabetes may inject 100 units or more a day in order to compensate for the body’s inability to utilize the insulin. Cellular insulin resistance and the resulting free flowing insulin are associated with an increase and change in lipid levels3 and large blood vessel disease (macrovascular disease). Macrovascular disease will result in atherosclerosis, which is the cause of heart disease, clogging of the carotid arteries and/or narrowing of the aorta that supplies blood to the legs and other body organs. Nearly half of all people with diabetes are also hypertensive. In people with diabetes who have these multiple factors for cardiovascular disease the risk for coronary artery disease may be increased 19-fold (Vinik 2003). 3 Lipid levels change in as far as HDL (good cholesterol) decreases and LDL (bad cholesterol) increases. Thus it is not only the increase in total cholesterol that predisposes to artery disease by also the composition of cholesterol. In addition to large blood vessel disease, diabetes causes small blood vessel disease (microvascular disease), which precedes macrovascular disease. The kidneys and eyes are the target organs of small blood vessel changes. Damage to the retina may result in blindness. After 15 years living with diabetes, 2% of patients become blind, and 10% develop severe visual impairment (V inik, 2003). There is evidence that damage to the eyes may start years before the diagnosis of diabetes. (Lecture at University of Michigan Medical School, Department of Endocrinology, Yakko Tuomilehto 2002). Therefore, treatment standards require that people with type 2 diabetes receive at least one annual dilated eye examination to detect and treat damages before permanent blindness sets in. Small blood vessel disease may damage the kidneys as well. Damage to the kidneys results in leakage of vital proteins into the urine. Although the process can be slowed with medication, it is estimated that about 40% of all end stage renal disease is caused by diabetes (National Diabetes Fact Sheet 1998). People with diabetes are the fastest growing group among dialysis and renal transplant patients. In Michigan in 2000 there were 2,015 hospitalizations among people with diabetes with the primary diagnosis of kidney disease (Michigan Diabetes Fact Sheet, May 2002). In addition to developing small and large blood vessel disease, people with diabetes are prone to infections due to high glucose levels throughout their body fluids. The glucose provides an abundance of food for pathogens while poor blood circulation limits the body’s natural defenses against infections. Therefore, people with diabetes can develop ulcers and pressure sores that invade the feet. While such sores are painful to the non-diabetic person, diabetes results in nerve damage and the person with diabetes may not notice the sores as a result of that nerve damage. There are accounts of people with diabetes who have cut off part of their toe while trying to trim a nail or corn without feeling any pain. Others have had foot ulcers that invaded the bone without feeling pain. For that reason, people with diabetes are asked to inspect their feet daily and physicians are expected to examine and monitor the feeling in the feet of people with diabetes with a filament at least once a year. Yet, despite the standard, diabetes is the most common cause of non-traumatic lower extremity amputations. In 2000, in Michigan 1,564 hospital discharges for diabetes documented some form of lower limb amputation (Diabetes in Michigan Fact Sheet, May 2002). While people with diabetes are prone to infections, infections such as the influenza can disturb the glucose balance because the body requires greater amounts of insulin to fight the infection. In addition the flu can affect the gastro-intestinal tract, which may result in electrolyte imbalance. Therefore, people with diabetes are asked to obtain an annual influenza vaccination to avoid the metabolic disturbances caused by the flu. As devastating as diabetes is in the more advanced stages, in the early stages of the disease there are no symptoms that the person with diabetes can feel or detect. The body adjusts and the brain even demands the higher glucose levels. As a consequence only 8% of people with diabetes surveyed recognized diabetes as a serious disease (Gilmet, 1999). Only a person who is knowledgeable about the symptoms of diabetes can recognize when the glucose metabolism is out of balance or when early symptoms of complications manifest themselves. However, once small or large blood vessel changes cause overt symptoms in one or more organs, the whole body has been affected by the disease and life threatening complications have started to develop. Prevalence and burden of disease It has been estimated that only one third of all people with diabetes have been diagnosed because type 2 diabetes has such vague symptoms in the early stages. Diabetes is one of the most prevalent and fastest growing chronic diseases in the United States. The overall prevalence of diabetes rose from 4.9 percent in 1990 to 6.5 percent in 1998. According to the Behavioral Risk Factor Surveillance 2000, 7.1% of the Michigan population reports that they have been told that they have diabetes (Michigan Department of Community Health 2000 summary). Type 2 diabetes constitutes up to 95% of all cases of diabetes (U SDHHS, CDC 2000). Type 2 diabetes prevalence increases with age; i.e. almost 20% of people over age 65 have been diagnosed with diabetes. In summary, diabetes is a serious disease that leads to nearly 190,000 deaths a year in the US. and diabetes is the leading cause of new cases of blindness among working-age adults, kidney failure, and non-accidental lower extremity amputations. Diabetes is also very costly. In 1997 in the US. the direct cost for diabetes totaled 44.1 billion dollars, and the highest cost stems from the treatment of diabetic complications (V inik 2003). Because of the complications, diabetes decreases the quality of life; nearly 50 percent of people with diabetes suffer limitations in their daily activities (CDC, 1999). Diabetes treatment As described earlier, diabetes is one of the chronic diseases for which there is no cure, however, glucose management has proven to improve clinical outcomes (Diabetes Control and Complications Trial Research Group, 1993; 1998; Gaster, 1998; Nasar, 1999, UK Prospective Study Group, 1998). The Diabetes Control and Complications Trial (DCCT) was one of the first clinical trials that demonstrated the benefit of tight glucose control. However, it targeted type 1 diabetes. Because people with type 1 diabetes develop insulin resistance over time it was hypothesized to apply to type 2 diabetes as well. It was estimated that tight glycemic control could decrease the risk for microvascular complications by thirty percent for those with type 2 diabetes (Diabetes Complications Control Trial, 1993). Since then research has concentrated on type 2 diabetes and demonstrated the effectiveness of tight glycemic control for preventing complications (United Kingdom Prospective Diabetes Study Group 1998). Specifically, for every 1% reduction in glycosylated hemoglobin there is a 22% - 35% reduction in microvascular complications (V inik 2003; Nasar, et al., 1999) and for every .9% reduction in hemoglobin Alc over 10 years there is a 16% reduction in heart attacks, a 25% reduction in microvascular disease and a 33% reduction in kidney damage (United Kingdom Prospective Diabetes Group, 19998). Therefore, the goal of diabetes treatment is tight glycemic control. Because of its importance, glycemic control needs to be monitored. People with diabetes monitor glycemic control at home by measuring blood glucose. Physicians monitor control with the help of glycosylated hemoglobin Arc, which measures the percent of glucose that is bound to protein, in this case the hemoglobin. It correlates to the mean blood glucose level during the past two to three months. The standards of the American Diabetes Association recommend that the hemoglobin Ale should be measured twice a year in people with well-controlled diabetes. This is a blood test that may be done by a laboratory or in a physician’s office. As mentioned before, most aspects of the diabetes treatment are part of self-care and the sole responsibility of the person with diabetes; i.e. following a prescribed eating pattern (Medical Nutrition Therapy [MNT]), exercise, foot inspections, obtaining influenza vaccination and dilated eye examinations. MNT and exercise are the foundation of diabetes treatment and are a requirement even in the earliest stages of the disease. MNT can be adapted to any ethnic needs and lifestyle factors; however, most people with diabetes need individualized professional help to adapt their eating patterns to meet their medical, psychological and social needs. Without tailoring, it becomes most difficult for the person with diabetes to eat appropriately. As research uncovers more of the causes for insulin resistance, exercise is seen as ever more important. Exercise has been shown to delay the onset of diabetes and to decrease or reverse insulin resistance (Tuomilehto, 2001). Therefore, people with diabetes need to exercise daily. However for people with diabetes, exercise is like medication and can lower blood glucose levels dangerously, therefore people with diabetes need information on how to exercise and how to adjust their medication and food according to exercise duration and intensity. In addition, once nerve damage (neuropathy) has developed, exercising may be difficult or painful. Exercise generally is difficult for obese persons and professional counseling or assistance may be needed. Depending on the type of insurance a referral from their primary provider may be required. Even if the insurance offers free access to diabetes education without referral, the person with diabetes needs to be made aware that such services exist and how to access them. Therefore the ability to practice self-care behaviors depends on the provider’s information giving and referral to diabetes education. Thus there is dependence on the provider and his/her staff to enable the person with diabetes to provide his/her own self-care. Other self-care behaviors, such as influenza vaccination and retina examination require teamwork between the provider and the person with diabetes. The person with diabetes has to seek out his/her provider and the provider has to use the opportunity to provide preventive services, such as influenza vaccines and eye examinations. To summarize, type 2 diabetes is a common and serious disease that leads to many complications. However, in the early stages diabetes has few symptoms and once symptoms develop, multiple body changes have already occurred. The goal of treatment is glycemic control, which hinges on diabetes self-care, such as eating habits, exercise, glucose monitoring, foot examinations and seeking preventive care. Few people with diabetes can manage the complexity of self-care on their own and therefore depend on their medical providers for education and counseling. This study will concentrate on the people with diabetes’ self-care behaviors in relationship to physician adherence to ADA standards for information giving and counseling. Before we can consider the impact of physician behavior on the patient’s self-care we need to explore physician and patient roles in the presence of diabetes. Diabetes treatment, the §i_c_l_§ £919 and physician behaviors This section will consider the relationship between the physician and the diabetic patient and the difference in their current roles compared to the Parsonian model. Along with the physician role, the paper will consider physician adherence to evidence based treatment guidelines for diabetes specifically in the area of counseling and information giving. Because diabetes treatment includes complex self-care behaviors, the diabetic patient becomes the physician’s partner. The physician guides and monitors yet the patient is responsible for the daily treatment. As a result the division of the roles is shifting; the diabetic patient is expected to become knowledgeable about diabetes and cannot be dependent on the physician for daily care. This challenges the traditional models that define physician and patient roles. The Parsonian model Parsons developed one of the first models that explore the physician/patient roles. The Parsonian model was developed in the 19503, and was focused on the fimctional roles of the physician and the patient. Parsons looked at the physician’s and patient’s role probably according to the physicians’ own perception. At that time infectious and acute illnesses were the norm. Thus at Parsons’ time, physician intervention was acute and required a high degree of technical competence to facilitate the speedy recovery of the patient (Freeman etal., 1989). The patient was afforded the “sick role” but there were underlying assumptions and expectations concerning the sick role: 10 o The patient is not responsible for his/her illness; 0 The patient is exempted from the daily tasks and duties; 0 This sickness is undesirable; o The patient is expected to seek out competent help. In Parsons’ model the sick person is assumed to be helpless, and to have low levels of knowledge and technical skills. The patient therefore is dependent on the physician’s expertise and management of his/her illness. The emphasis is on the physician as manager and the patient’s following physician orders because the patient cannot recover or become well on his/her own. In return the patient is excused from his/her social roles until recovery (Wolinsky 1980). F riedson and others have criticized Parson’s Model because it does not differentiate according to the severity of the disease and therefore does not allow for the non-acute chronic type of diseases from which there is no recovery. Friedson dichotomized the inability to perform the expected social role into minor and serious deviation. This dichotomization permits for different reactions according to acute or chronic conditions. Diabetes without complications would fall into the minor deviation where the individual is expected to function in his/her role. Likewise Szasz and Hollender’s work redefined the doctor-patient models around disease severity. They proposed that patient passivity and physician dominance are most common in acute disease. Less acute disease is characterized by physician guidance and patient cooperation. (Szasz and Hollender 1956). Because Parsons did not consider disease severity or chronic illness, the patient is granted the “sick role” until health is restored. 11 However, in most cases the diabetic person is not granted the sick role but is expected to fimction in his/her given family/work role while caring for him/herself, changing eating habits, monitoring his/her blood glucose levels and finding time to exercise and to seek medical help in managing the illness. It is not unusual for a person with diabetes to disagree with his/her environment on how much he/she should be expected to work and how much social support is needed. While this minimized sick role is demanding on the person with diabetes, at the same time he/she is less dependent than the patient in the Parsonian model. While the patient in Parson’s model is passive, the modern person with diabetes is proactive. Due to the chronicity of diabetes, the relationship shifts more towards the Szasz and Hollender model. The physician guides and assists the patient in the management of the illness but the patient is responsible and becomes the expert. Thus, the informed person with diabetes limits the physician’s professional dominance, which is the foundation of the Parsonian model. During acute stages of complications the patient may rely on the physician’s guidance; however, the patient is the expert regarding his/her body’s reaction in different situations. Thus, even during the acute stages the knowledgeable person with diabetes is a partner to the treating physician. One could state that today’s person with diabetes is expected to become his/her own alter-physician. In order to achieve that role, the person with diabetes needs skills and knowledge about diabetes, his/her body’s symptoms and the complications of diabetes. The person with diabetes cannot gain those without professional help. In order for the person with diabetes to succeed in self-management, he/she needs extensive training as well as support from other professionals. These services need to be provided or encouraged by the provider. 12 Thus chronic diseases and specifically diabetes, redefine both physician and patient roles into a complex interdependent relationship. Many physicians have not been prepared during their training for this shift in the relationship and do not follow the ADA practice standards that require the physician to train, support, and monitor, rather than to just “treat”. To summarize, successful treatment of diabetes requires an active partnership between the physician and the patient, rather than a dependent patient who assumes passively the “sick role”. The person with diabetes needs counseling and education either directly from the medical provider or from support personnel in order to become a partner. Therefore, the physician’s dominance decreases and the diabetic patient’s responsibility increases until he/she becomes the physician’s partner in the treatment of his/her diabetes. The following section will turn from physician and patient roles to 6‘ examine self-care behaviors, which are expected in the patient’s new role”. 13 Theor_'y 3! health behavior that applies tp thjp study: IQ Health Belief Model One of the first models developed and used for the last five decades to explain health and self—care behaviors is the Health Belief Model (HBM). The HBM was developed in the early 19503; it is one of the value-expectancy models. Originally it was developed to explain failure to take advantage of preventive health services, such as TB screening. Although the Health Belief Model was developed for preventive health actions, it was later expanded to include the more complex illness and sick-role behaviors (Rosenstock, 1974; Becker 1974; Janz and Becker, 1984). The model holds that people will take actions to improve or guard their health: 1. If they regard themselves at risk for the illness, 2. Perceived susceptibility 3. If they believe that the illness is serious or has serious consequences, 4. And they believe that they can take actions that will avoid the serious disease or its consequences (Glanz et a1. 2002). Perceived susceptibility This construct refers to a person’s perceived likelihood of contracting the disease or condition. For this study’s population, perceived susceptibility is no longer of interest. Participants have already been diagnosed and are aware of the diagnosis (Glanz et al., 2002). Those who do not recall that they have been told that they have the disease have been excluded from the study. 14 Perceived severity Perceived severity refers to the person’s belief that contracting a disease or leaving it untreated will have serious medical consequences to their health or even life. In the case of this study population, perceived severity pertains to the belief that lack of self-care and high blood glucose levels will lead to serious consequences. Medical science has proven that the probability of developing complications is a function of glucose levels over time. According to an unpublished study of the American Diabetes Association, only 8% of people with diabetes believe that diabetes is a serious disease (Gilmet 1999). Hence one problem is the lack of perception of the severity of the consequences of lack of glucose control. The difficulty is that there are no symptoms that the patient can detect in the early stages of diabetes. Therefore, the person with diabetes depends on medical providers to communicate the severity of diabetes and the threat from complications; only the most educated people with diabetes will become aware of the impact of high blood glucose levels without the help of a provider. Even among people with diabetes who have developed heart disease, many do not realize that diabetes is the underlying cause of their heart disease. Few people with diabetes realize that diabetes can cause blindness unless their health care provider made them aware of the danger. Therefore, perceived severity depends on provider communication and information giving. One way to consider the severity of diabetes is to look at the number of complications that have developed due to diabetes, such as heart disease, stroke, and amputations. 15 Perceived barriers Perceived barriers are the perceived potential negative effect or psychosocial cost of taking the needed health actions and to avoid the serious consequences of the disease. The perceived cost is the physical, psychological, and social cost of self-care. Perceived cost for diabetes self-care may seem overwhelming to the person with newly diagnosed diabetes. It includes the cost of dietary compliance, which may require a break with family eating traditions or limiting the favorite high fat or high sugar food. Without the help of a dietitian or diabetes educator, few people with diabetes can adjust their eating habits to meet their own emotional, ethnic, and medical needs for food while balancing their blood glucose levels. Exercise poses similar challenges for people with diabetes. Without the help of an exercise professional few people with diabetes can start an exercise program that fits into their daily routine and accommodates other physical conditions without experiencing hypoglycemic reactions. Indeed, most people with type 2 diabetes are severely overweight and have difficulty exercising secondary to their excess weight. Other people with diabetes may have vascular insufficiency or may have developed neuropathy and experience pain while exercising due to lack of oxygen supply or nerve damage. An exercise physiologist can assist the person with diabetes to choose an exercise program that is appropriate for his/her physical condition and disease stage. Similarly, blood glucose monitoring is painful because the skin needs to be penetrated to collect blood and the “lancets” (needles) that are used, are relatively thick. 16 People with diabetes in the advanced stages may be asked to check their glucose level up to seven times a day, which transforms their fingertips into pin-cushion-like appendages. One needs to consider that some people have a fear of needles; others experience distress at the sight of their own blood. To puncture that finger again and again requires motivation and the understanding that the discomfort at the present time lowers the risk for greater pain or loss of independence at a later time. Likewise, receiving a flu vaccination can cause anxiety in people who fear complications and illness as result for the immunization. The dilated eye examination that is needed at least once a year costs time and is inconvenient. Some people are unable to drive themselves home after the dilation and thus have to ask for help. The perceived cost of diabetes self-care behaviors can be lessened by professional counseling and by tailoring the treatment to the life style of the person with diabetes. However, few physicians are trained in counseling methods and most become frustrated with the diabetic patient’s psychosocial barriers. Therefore the physician’s referral and encouragement to participate in diabetes education is needed (Larme 1998). The ADA standards call for communication, teaching and support either from the physician or by some other health professional to whom he/she delegates the responsibility during every office visit. The cost to the person with diabetes varies with each behavior, while some diabetes self-care behaviors are difficult or costly behaviors, other behaviors such as foot care pose less cost to the patient. 17 Perceived benefm While the perception of the severity of the consequences of the disease can be a cue to action, the person must also believe that he/she can take action to ameliorate the consequences of the disease - perceive a benefit. Perceived benefit of self-care is the belief that self-care can delay, limit, or prevent the complications of diabetes. Unless the person with diabetes knows and believes that tight glucose control can prevent or delay complications, the person with diabetes will not be motivated to exercise or to monitor blood glucose levels. Unless the person with diabetes is aware that early detection can limit the severity of the complication he/she will not be motivated to monitor his/her feet or eyes. However, the patient cannot know the importance of self-care and glucose control in the prevention of complications, unless someone communicates this. It is the ADA standard that the physician provides counseling for the patient regarding the importance of glucose control and preventive care during every visit. Self-efficacy Self-efficacy was first studied by Bandura (Bandura 1977). It can be defined, as a person’s belief that he/she can perform the required behavior. Rosenstock, Stretcher, and Becker held that self-efficacy should be added to the HBM as an additional construct (Glanz et a1. 2002). The addition of self-efficacy to the HBM is particularly needed when the model is extended from simple preventive behaviors for which it was developed to chronic conditions and their complex self-care behaviors, such as diabetes self—care. Self-efficacy is specific to each behavior and the magnitude of self-efficacy for exercise can differ from the magnitude of self-efficacy for blood glucose monitoring or foot 18 inspections. Self-efficacy is increased during structured health education activities and when the appropriate self-care behavior is modeled, such as when the provider checks the feet or inquires about home blood glucose readings. Perceived severity of diabetes, benefit, and barriers are all correlated. The greater the perception of severity, the greater will be the perceived benefit. IF THE PATIENT DOES NOT PERCEIVE SEVERITY OF THE DISEASE, HE/SHE WILL NOT PERCEIVE MUCH BENEFIT FROM CONTROLLING IT. In order to be willing to put up with the cost, there must be a perceived severity and benefit. While the person with diabetes is most aware of the cost of self-care, the severity of complications and benefit of self-care must be communicated by the providers. 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The American Academy of Internal Medicine, the American Academy of Family Practitioners, as well as many other professional organizations accept and adopt the standards from the ADA and expect their professional members to practice accordingly. The treatment standards have been changed and updated on a yearly basis as research provided insight into diabetes prevention, the disease process and the benefit of tight glucose control. The first benchmarks came from the Diabetes Complications and Control Trial (DCCT Writing Group, 1993) and the United Kingdom Diabetes Study (N asar, 1998). Both studies demonstrated that tight glucose control decreases the probability of developing micro and macro vascular disease. Until then medical practitioners accepted blood glucose levels of about 200 mg/dl for people with diabetes 21 because people with diabetes “feel good” and no acute episodes were observed at those blood glucose levels. Since the DCCT and UK studies, blood glucose levels are expected to stay near normal, less than 140 mg/dl at all times in order to limit long-term complications. However, when persons with diabetes keep their blood glucose levels low, the probability of hypoglycemic reactions increases. People with diabetes who have had high blood glucose levels and bring them into the normal ranges feel as if they are having hypoglycemic reactions until the brain readjusts to normal levels. This may take a few weeks. Thus the person with diabetes needs extensive cognitive skills as well as professional support to maintain tight glucose control; i.e. the participants of the DCCT study were supported by the services of a psychologist, a teaching nurse, a dietitian and an exercise therapist for the almost ten year duration of the study. Most medical practitioners cannot provide such extensive professional resources and much of the responsibility to teach and support falls on the physician and his/her staff, who are expected to keep up with the changing practice standards as well as motivational techniques. This is particularly demanding on the general practitioner who has to keep up with many conditions and prevention standards, not just diabetes. Therefore it is not surprising that diabetes care falls short of the treatment standards, particularly in the areas of counseling and information giving. Part of the issue may be that physicians in general do not trust changing clinical practice standards nor the concept of evidence based standards in general. Both of the terms are relatively new in medical care and may be viewed as “cook book medicine”. Mottur-Pilson (2001) found that physicians point to different reasons for failing to adhere to standards. Some physicians cite lack of awareness or distrust towards the standards as 22 reasons; others make a professional decision that the patient does not benefit from the service because of his/her age or comorbid conditions. In a survey sponsored by The Quality Indicator, Physician Resource (February 2002) up to 50% of physicians reported relying on their “professional experience” in treating patients rather than on clinical treatment standards. However, the professional experience is not a controlled trial that either adjusts for the different variables or compares treatment outcomes under like conditions. Therefore, using professional experience is not a scientific or evidence based approach to treatment. Larme (1998) found that Primary Care Providers (PCPs) were frustrated with the treatment of diabetes. They ranked diabetes as disease more difficult to treat than hypertension, hyperlipidemia, angina and arthritis. They reported that the disease process is complex and medications are difficult to regulate because of the effect of food and exercise, the patient’s self-care behaviors. Their responses recalled “horrible struggles” with patients over diet and life style changes. Physicians lamented that they had received insufficient training in medical school and residencies to promote lifestyle changes. They also cited lack of support from the health care system as part of the problem in treating diabetes. Thus there are several reasons that can explain the lack of diabetes counseling. In the previous sections we have explored the disease process of diabetes, its treatment, the physician and patient roles in diabetes, behavioral theories, and physician adherence to diabetes treatment standards. Next the study will turn the attention to patient behaviors, particularly self-care behaviors required for glucose control in the presence of diabetes. 23 Self-care behaviors in diabetes This section will explore self-care behaviors and their complexity as required for diabetes. As self-care behaviors become more complex, adherence becomes more challenging. Diabetes self-care behaviors may be the most complex among the chronic conditions, both from a behavioral point of view as well as from a cognitive point of view. Levin, Katz and Holst (1976) defined self-care “as a process by which the lay person functions on his/her own behalf to promote health, to prevent illness, and to detect and treat disease when it occurs.” The concept of self-care spans a variety of behaviors that range from nutrition and exercise habits, to symptom diagnosis, self-medication, and home remedies, as well as seeking professional assistance and the manner of interaction with the “professional sector” (Seagal and Goldstein, 1989). All of these behaviors together are considered self-care for diabetes. Dean (1989) organized self-care behaviors into the following categories: a) routine daily habits of living that affect health, such as smoking, drinking, sedentary behavior, etc; b) consciously sought health maintenance behaviors such as exercise and blood glucose monitoring6 c) behavioral responses to symptoms of illness such as seeking professional assistance for insulin adjustment, etc. All of these self-care categories impact glucose control, which determines the extent of the complications. 6The difference between #1 and #2: #1 consists of behaviors of the daily routine; #2 are consciously sought behaviors that effect health. 24 Thus, diabetes requires complex self-care behaviors; it demands an understanding of the body’s glucose and lipid metabolism, the disease process, and diabetes complications as well as the recognition of their symptoms. In addition to these cognitive skills, self-care requires difficult behavioral changes that may conflict with the self-image and lifestyle of the person with diabetes. (Anderson et a1. 1997, Lupton 1994, Larrne 1998). People with diabetes need: Regular exercise to reduce insulin resistance, correct the lipid metabolism, and to enhance the circulatory system; A diet that keeps glucose levels balanced and lipid levels low; Home blood glucose monitoring to evaluate the outcome of self-management; Daily foot inspections to discover and treat infections; An annual influenza vaccine to prevent the complications of the flu; An annual dilated eye examination to detect and/or treat diabetic eye damage. Obtaining an annual influenza vaccination and retina examination are office based self-care behaviors. One could argue that they are under the control of the physician, however, while the physician can provide the services, the patient can obtain dilated eye examination from an optometrist and the influenza vaccination from community centers or even in the supermarket. No referral or prescription is needed. Thus, while the physician can provide the services for the patient, the patient also can take initiative and act on his/her behalf. Therefore the two behaviors will be included with other self—care behaviors. The timing of exercise, the monitoring of blood glucose and the time required to care for feet and eyes impact on every phase of the life of the person with diabetes’ as well as on that of his/her family. Yet, self-care is an integral part of treatment and the 25 key to avoiding complications. Because of the complexity of self-care, most people with diabetes require counseling and education, such as exercise counseling and diabetes education for blood glucose monitoring. Counseling and education in turn increase self- efficacy (Sackett 1979; Becker 1975; Lorig 2001). Considering the complexity of diabetes self-care and considering that this self- care is needed for the duration of the life-span, it is not surprising that many people with diabetes do not adhere to self-care standards as expected. According to Lutfey (1999) and Kurtz (1990) only one third to three fourth of people with diabetes adhere to self-care guidelines. The next section will explore the relationship between diabetes, self-care or the lack of it, and the physician’s information giving according to treatment standards. Non-adherence and provider practice in diabetes Non-adherence in patients has been studied since the beginning of the 20th century. Both Haynes and Sackett et al. have listed almost 2,000 references on non- compliance research (Phillips 1988). The terminology for non-adherence has changed over the years. In the early part of the century, the patient was considered to be “defaulting” (Wright 1982). From “defaulting” evolved the concept of “non-compliance” in the 19708 (Becker 1972) and in the 1990s the same behavior was defined as “non- adherence”. Studies of non-adherence and non-compliance have focused on the patients’ behaviors of taking prescribed medication or appointment keeping (Phillips 1988). Those two behaviors are relatively simple, not as complex as exercise and home blood glucose monitoring. Adherence to diabetes self-care behaviors may be linked to patient/physician 26 communication as well as other physician behaviors, such as information giving and encouragement to practice diabetes self-care behaviors. Therefore, the physician’s communication and information giving must be considered when we study self-care behaviors in people with diabetes. Non-verbal as well as verbal physician communication has been shown to affect compliance. Terry et al. (2000) found that physician advice contributed to overall satisfaction with care, which has been found to correlate to adherence (Pumilia 2002; Clemenhagen 1994). Roter (1994), Phillips (1988), Beck et al. (2002), and Moci (2001) found that physician support for the patient’s questions, and providing health specific information increased patient adherence. A meta analysis showed that advice by primary care physicians to quit smoking increased the odds ratio for quitting to 1.69 (Silagy, Stead LF 2002). The American Lung Association study (1999) found that patients who have been advised by their physician to stop smoking are 15 to 30% more likely to stop smoking. The Brown University Digest (2002) reports that problem drinkers benefit from brief physician advice to limit drinking. Fleming et al. (2002) found that problem drinkers who received information and counseling from their physicians were likely to reduce their drinking both at six month and four year measurement points. The Writing Group for the Activity Counseling Trial (2001) reported success for all patients who received physician advice to exercise. Beresford et al. (1997) found that low intensity interventions, such as counseling by primary care physicians resulted in changes in eating patterns such as fat and dietary fiber consumption. Taveras et al. (2003) found that physician advice and support for breastfeeding increased the number of mothers who breastfed. The duration of success after counseling varies according to behaviors and 27 setting from four months to four years (The Writing Group for Activity Counseling 2001 , Silgagy 2002, Fleming 2002, Taveras 2003). The success of physician counseling or advice may also depend on the physician’s own modeling (Hugins 2003) of the health behavior. If the physician does not counsel during the regular medical visits, then the person with diabetes needs the assistance of other health professionals who can provide the behavioral interventions. However, that requires that the physician informs the person with diabetes about diabetes education opportunities and encourages the person with diabetes to seek out such assistance. Working with a diabetes educator or a dietitian can lower the perceived cost for self-care by tailoring the self-care behaviors to the schedules, ethnic and family norms of the person with diabetes. Furthermore, such health professionals can reinforce the physician’s communication regarding the threat of complications and the benefit of tight glucose control. McGlynn (2003) et al. found in a national study that physicians provide 56.1% of recommended care to people with chronic conditions in general, 45.4% of recommended diabetes treatment and 18.3% of recommended counseling or education. Conrad (1994) found that only 48.9% of insulin treated type 2 people with diabetes and 23.7% of non- insulin treated type 2 people with diabetes had any counseling or diabetes education at any time during their disease process. He found that the average length since the last diabetes education was reported to be 4.5 years. People with type 2 diabetes who do not use insulin were least likely to report education or counseling. 28 Considering that physicians provide only 18.3% of the counseling and about one quarter of all people with diabetes receive formal diabetes education, it is not surprising that patients with diabetes do not adhere to self-care recommendations; they may not even be aware of the importance of self-care (Lutfey 1999; Kurtz, 1990). Once patients have received diabetes education or participated in self-help groups they are more likely to adhere to self-care guidelines (Deyo 2001, Lorig 1999). In summary, there is evidence that physicians do not adhere to diabetes treatment standards in general and to counseling standards in particular. As a result people with diabetes may not have the cognitive skills and behavioral capacity to practice the desired self-care. Because the difficulties with diabetes treatment and the lack of adherence to the diabetes clinical practice guidelines is known, accrediting and watchdog agencies require monitoring and evaluation of diabetes treatment, such as the National Committee for Quality Assurance (NCQA) and Health Employer Data Information System (HEDIS) measures. However, their measures have limitations. At the present time neither NCQA nor HEDIS require monitoring medical providers’ information giving for diabetes or referrals for dietary counseling or self-care classes (Von Korff 1997). The selection and choice of evaluation criteria encourages or even forces medical care providers to pay attention to that which is perceived to be important. Physician adherence to guidelines appears lower for behavioral or patient focused practices compared to physiological practice components (Glasgow 1999). As the next section will show, all diabetes care indicators are lower than one would expect. The data that are explored in the following 29 sections are taken from Healthy People 2010, Diabetes in Michigan, HEDIS measures, and M-CARE’s Diabetes Health Status Survey Questionnaire. Outcome measures for diabetes treatment One of the data sources that look at diabetes treatment is Healthy People 2010. Healthy People 2010 reports national data from the 1998 Behavioral Risk Factor Surveillance System by the Centers for Disease Control. The information is self-reported and was collected from a stratified random sample of Americans, some of whom have no health insurance; others have a variety of different insurance coverage. Hence the diabetes data are different from other sources that gather data only from people with diabetes who are covered by medical care insurance. Local treatment data comes from the Michigan Department of Community Health. Their Diabetes Fact Sheet combines information from the Michigan Behavioral Risk Factor Surveillance Survey (self-reported data) as well as claims data from Michigan’s diabetic population. The data is specific to Michigan and includes people with a variety of insurance plans, no health insurance, as well as those who are covered by managed care. The Health Employer Data Information Set (HEDIS) reports data gathered by Managed Care Organizations (MCOs). HEDIS reports contain data fi'om claims as well as information from chart audits. HEDIS requires several measures for diabetes care. The national HEDIS data for 1998 come from over 70 million people who receive medical care through managed care organizations. Sampling and data collection methods are strictly defined and adherence is verified by audits. 30 The most specific data source for this paper is the M-CARE Diabetes Health Status Questionnaire. It is a survey that is mailed to a random sample of M-CARE’s diabetic population. One of its purposes is to collect M-CARE’s data for the HEDIS report. Hence one could consider the data a subset of the national HEDIS data. The data is also self-reported. The following table lists the different data sources, the diabetic treatment measures and the percent of people with diabetes who received the treatment and the data source. Each column lists the percentage of surveyed people who received the services. Although the American Diabetes Association Standards call for a minimum of two hemoglobin A1c measures per year, HEDIS and NCQA for whom most of the measures were collected, require only one An measure per year. Table l: Adherence to practice guidelines according to various data sources [Trgatment' ‘ J. I Healthy People Diabetes-in H HEDIS " TIM—CARE Health. ” " i I .2910 . j , “Michigan 4; . Stags Survey" Patient based self-care Diabetes Self-Care 40% NM‘ 24% 24% Education Home Blood Glucose 42% NM NM NM Provider based self-care Foot Examination 55% 64% 55% 39% One hemoglobin A], 24% 21% 80% 86% measure per year Self-care that can be initiated by either provider or patient Influenza Vaccination N/M* 46% NM‘ 73% Eye Examination 56% 71% 50% 68% N/M= not measured or not reported 31 According to the data collected during 1998 for Healthy People 2010, as well as the HEDIS data and the data from the Michigan Behavioral Risk Surveillance Survey data, people with diabetes are not receiving self-care education, hemoglobin Ale monitoring, foot examinations, influenza vaccinations or dilated eye examination according to ADA standards; all measures could show 90 % compliance. The ADA standards call for ongoing dietary counseling, a minimum of two hemoglobin Alc tests per year, (not one as reported in Table l) and an annual eye examination, foot examination, influenza vaccination as well as home blood glucose monitoring for the majority of people with diabetes. Some may argue that physicians may have ordered diabetes education and the patient may not have complied. However, people with diabetes see their physicians at least twice a year, therefore the physician can insist on compliance before the next visit or before he/she re-orders diabetes medications. Hence, even though the person with diabetes has to cooperate, the physician can exert control. The hemoglobin Alc test is totally under the physician’s control; it does not require fasting and can be performed in the physician’s office or at least blood can be drawn in the office and sent to the lab. The annual dilated eye examination requires the cooperation of the person with diabetes to keep the appointment for the eye examination. However, the physician can exercise control, mail reminders or call to remind the patient with similar methods that are used by dentists and veterinarians to remind their clients. The foot examination is performed by the physician or the nurse and is the physician’s sole responsibility. The influenza vaccination is under the physician’s control. It can be given between October and February. Whenever the patient sees his/her doctor at least two times a year, the 32 physician has the opportunity to vaccinate. Home blood glucose monitoring requires the cooperation of the person with diabetes, as well as training and reinforcement from the physician. Therefore when one examines the lack of expected diabetes self-care one has to consider the lack of physician adherence to clinical practice guidelines and communication with the diabetic person. This relationship between lack of physician information giving and self—care behaviors is not clear and the magnitude of that relationship is not known. 33 Unresolved Questions concerning provider’s practice and self-care While there is growing awareness in the literature that many physicians do not practice according to evidence based standards (Simon et al. 2003), little is known about the impact of physician non-adherence on diabetes self-care behaviors. Because of the importance of self-care and the common lack of it, much research has focused on diabetes self-care. However, most research has studied the patients, their attitudes and beliefs without controlling the provider’s information giving or adherence to ADA practice standards and the impact on the people with diabetes’ self-care (Von Korff 1997, Heissler 2002). Some studies have focused on physician adherence, others on diabetes self-care behaviors. The link between provider adherence to standards and the diabetic person’s adherence to self-care behaviors is poorly understood and needs to be explored. Therefore, this study aims to explore the concept of self-care in the presence of diabetes and its relationship to physician communication and information giving according to treatment standards. Furthermore, existing research regarding the self-management of diabetes has focused on patients that are treated in specialized diabetes clinics, which offer a range of support services and may have diabetes educators among their staff. It is reasonable to assume that patients whose diabetes is treated by specialists are in the more advanced stages of diabetes and at that time they have become aware of the severity of diabetes complications. As has been shown in the context of the HBM, disease severity of diabetes is important because in the early stages there are no symptoms and the presence of complications affects perceived severity of diabetes. The cost of blood glucose 34 monitoring and exercise may appear to be less once the person with diabetes is faced with the increasing threat of loosing a foot, leg, or eyesight. While general practitioners are expected to keep abreast of most conditions, new developments, and treatment standards, specialists can concentrate on the treatment of diabetes and its complications. Therefore, specialist and staff become expert in treatment expectations and disease process and information giving regarding diabetes. In the US, primary care physicians provide more than 90% of diabetes care (Heissler 2002, Glasgow 1999). While primary care physicians are quite capable of caring for people with diabetes in the earlier stages of diabetes, there is little knowledge regarding primary care provider adherence to standards, information giving and the impact on diabetes self-care (Koltun 1986). There is reason the suspect that there is a difference in communication from specialists and their specialized support staff compared to the primary care physician and his/her staff ( Zgibor, et al. 2002). What is true for the specialist may not be true for the primary care physician. This study aims to explore the diabetic person’s recall of communications from their primary provider and their supporting staff and the impact on self-care behaviors. Patient recall as a measure of physician behavior This study concentrates on the self-report of self-care behaviors and provider information giving as recalled by the patient. One could argue that recall is not an accurate measure of provider information giving. Previous studies have shown that patient recall of information given by medical providers varies greatly. For example recall of medication instruction was as high as 89.6% when instructions were reinforced in writing or as low as 26.6% from verbal provider instruction (Crichton 1978). More 35 extensive teaching, such as pre-operative teaching may be of similar interest to the patient as diabetes self-care education. Cheng (2002) found recall as high as 96% among surgical patients. In our particular situation (recalling having received diabetes self-care information) it is suspected that the level of recall should be relatively high. Patients are being asked if they received some information - not if they remember anything specific. In addition, if physicians did provide the information and patients do not recall receiving it, then providers need to devise methods of conveying such information that are better retained by the patient. The person with diabetes should have a minimum of two physician visits per year; most people with diabetes average three visits per year (The writing group for activity counseling in Primary Care, 2001). The standards require counseling during each of the visits. Thus the patient should receive self-care information several times per year and be able to remember. Furthermore, if the person with diabetes cannot remember receiving the information then it is impossible for him/her to act upon the information and practice appropriate self-care; this study explores the effect of information on self-care. 36 HYPOTHESES The following section contains the hypothesis statements of the dissertation. While there are several different hypotheses and some of them may be related, each hypothesis is assuming that other factors are equal. Provider advice and self-care behavior In a large California study of people with diabetes enrolled in a managed care organization, members who had seen a nutritionist or were part of a diabetes support group were more likely to also have received retina examinations, foot examination and glycosylated hemoglobin testing (Lorig, 1999). In other words, it appears that those who receive diabetes self-care teaching also receive medical care according to treatment standards from their physicians in other areas. Likewise, Terry et al. (2000) Pumilia (2002), Clemenhagen (1994), and Silagy (2002) found that physician advice to quit tobacco use improved the odds ratio for smoke cessation. Fleming (2002) reported that drinkers reduced drinking after physician advice. The Writing Group for the Activity Counseling Trial (2001) reported that physician advice increased physical activity. Smoking and alcohol consumption are addictive behaviors and it is not clear how they relate to diabetes self-care behaviors; exercising however, is one of the diabetes self-care behaviors and the study demonstrated that it was increased by physician advice. According to the Health Belief Model, the provider’s advice should increase the perceived benefit of the self-care behavior and give a cue to action. 37 Hypothesis 1: Hypothesis 1.1: People with diabetes who recall their provider’s advice to engage in specific diabetes self-care activities (blood glucose testing, exercise, foot examination) are more likely to report practicing that self-care behavior. Hypothesis 1.2: Those who receive more self-care advice from their provider are more likely to engage in office based self-care behaviors (influenza vaccination and retina examination). The second hypothesis is stated because there are such situations where we do not know whether the provider gave specific advice on that behavior and a general information giving index measure will be used as a predictor. As mentioned previously, the two office based self-care behaviors are under the provider’s control, but the person with diabetes can secure these services independently without provider assistance. Self-care a_nr_i_ provider modeling According to the HBM, the person with diabetes must believe that he/she can perform the required self-care activity. This belief is also known as self-efficacy. Home blood glucose monitoring is the foundation of diabetes self-monitoring and the only information that enables the person with diabetes to intervene as soon as blood glucose levels rise or fall. According to American Diabetes Association standards, (2000, 2001) home blood glucose monitoring is recommended for most people with 38 diabetes along with a recording system of blood glucose levels. By examining the home blood glucose record, questioning the results, and suggesting adjustments for high or low blood glucose readings, the provider models and demonstrates how to make decisions based on blood glucose levels. When this occurs regularly during visits, the person with diabetes learns to follow the provider’s example and how to interpret blood glucose readings and how to adjust medication, diet and exercise. As the person with diabetes sees the success of his/her decisions or gets help from the provider, the person with diabetes learns that he/she is capable of controlling his/her blood glucose levels. Thus, self-efficacy for controlling blood glucose levels increases. Self-efficacy has been found to be one of the better predictors for self-care behaviors (Lorig 2001, Plotinikoff 2000, Johnson 1997, Skelly 1995). Provider review of the glucose log is one of the American Diabetes Association practice standards. Similarly, professional foot examinations should take place at least yearly for people with diabetes during the annual physical, more often for those who have difficulties with glucose control or their feet. Nationally 55% of people with diabetes recall having an annual foot exam. 39% of M-CARE’s diabetic members recalled having had a foot examination from their physician within the last twelve months (See Table 1). In addition to provider examination, people with diabetes need to monitor the condition of their feet themselves daily. As mentioned before, due to the prevalence of nerve damage, the person with diabetes may not feel pain in the presence of injury or infection. It is theorized that when the physician examines the feet and tests for nerve damage, the person with diabetes learns that his/her feeling may not be reliable; that in turn increases the perceived susceptibility (HBM). He/she learns to follow the provider’s modeling and 39 to inspect his/her own feet for signs of injury or infection; that in turn increases self- efficacy (HBM). Thus, provider modeling of self-care behaviors, or provider demonstration of self-care such as reviewing the home blood glucose log and examining the feet, will increase the self-efficacy of the person with diabetes for those two behaviors. In addition to increasing self-efficacy for those two behaviors, the providers’ modeling of the behavior communicates to the person with diabetes that the behaviors are important in preventing the complications of diabetes. The monitoring of the home blood glucose log communicates that glucose logs and glycemic control are important for preventing the complications of diabetes. The inspection of the feet sends the message that early detection of infections or injury can prevent further complications. Simon (1999) found in California that those who received foot exams were also more likely to receive other diabetes care, such as retina exams. Hugins (2003) found that physician modeling of self-care behaviors appears to effect self-care behaviors. Hypothesis 2: When the provider models self-care behaviors the patient is more likely to practice self-care behaviors. Hypothesis 2.1 :When the person with diabetes recalls that the provider examined the home blood glucose log; the patient is more likely to monitor his/her home blood glucose levels. Hypothesis 2.2: When the person with diabetes recalls that the provider examined his/her feet, the person with diabetes is more likely to report examining his/her own feet at home. 40 Self-care 1151 provider referral 2M information giving Discussing self-care and encouragement to use diabetes education are part of the treatment standards for diabetes (American Diabetes Association 2000, 2001). Larme (1998) found that physicians report that they received little training in medical school and during the clinical years regarding counseling for self-care behaviors and assistance with life-style changes. Therefore, many physicians feel frustrated and unable to change the diabetic person’s behavior. Glasgow (1999, 2000) and McGlynn (2003) found that performance measures for support for self-management and counseling are lower than those that monitor biological markers. Because of the difficulties in the primary care setting and the lack of skill and time required for counseling, people with diabetes need counseling from specialized support providers, such as dietitians or diabetes educators. Hypothesis 3: Hypothesis 3.1: People with diabetes who recall receiving information regarding diabetes education are more likely to take advantage of diabetes education. Hypothesis 3.2: Those who receive diabetes education are more likely to practice appropriate self-care behaviors. 41 Figure 2: Proposed relationship between patient characteristics, physician practice and self-care behaviors Patient Characteristics: Age Education Ethnicity Gender Income Complications Years since diagnosis with diabetes 1 Provider Behavior Variables > Adherence to clinical practice guidelines by providing patient self-care education > Modeling self-care behaviors VVVVVVV Patient Self Reported Self-care Activities Exercise Home blood glucose Foot examinations Influenza vaccination 4— Eye examination VVVVV 42 Severity 91' diabetes in; physician practice The severity of the disease, and the progression of diabetes complications may influence physician referral to specialty and support services. Once complications set in, physicians refer the person with diabetes to medical specialists, self-care education etc. One measure for the severity of diabetes is time since diabetes diagnosis, and presence of complications, such as cardiovascular conditions and neuropathy. Complications develop according to glycemic control and time lived with diabetes (Comrad 1994, Anderson 1994). Also, seen from the Health Belief Model, once complications become symptomatic the person with diabetes is more likely to recognize the severity of diabetes, i.e. once a person with diabetes has had the first heart attack or bypass surgery, he/she is more likely to consider the seriousness and try to maintain the appropriate self-care behaviors. However, once a person has had a stroke or an amputation, exercise may be limited. Therefore disease severity has to be considered when we study the relationship between treatment, and diabetes self-care behaviors. The issue is this: Self-care in the early stages can delay or prevent complications, but referrals and encouragement for self-care appear to be offered in the later stages of diabetes when the disease process limits the person’s independence secondary to the complications of diabetes. 43 Hypothesis 4: Those who are in the more advanced stages of diabetes are more likely to report using the services of a specialist. Demographics, provider information giving 113! self-care Dean (1989) found socioeconomic status, including education was found to be the greatest predictor for self-care. David Williams (1990) found low socioeconomic status as predictor for high body weight and Bucher and Ragland (1995) found a relationship between high serum cholesterol levels and low education. Similarly, Sorlie et al. (1995) found that a higher education level is associated with lower mortality. Provider information giving and encouragement for self-management of diabetes may vary according to patients’ economic status, ethnic background, gender, or education level (Roter & Hall 1992, 2001, Wiggers 1997, Scott 1996, Kaplan 1989, Waitzkin 1991). There is growing evidence that health outcomes and technical medical care vary by education, age and ethnic group (Anderson 1995, Sorlie 1995, Scott 1996, Callahan 2000, Roter 2002). Thus Lipton (1998) found that physicians frnd it more difficult to communicate with patients with low reading levels or low language proficiency. When physicians have difficulty communicating, then patients may not understand and be able to be motivated to follow self-care instructions (Roter & Hall 1992, Boyer 1996, Anderson 1997, Wagner 2001). 44 Education influences diabetes control in other ways; education is correlated to income. The better-educated person generally earns more than the less educated person does. Those who have greater financial resources have the ability to buy foods that are helpful in the diabetic diet, such as fish and fresh vegetables (Sorlie et al. 1995). Furthermore, the better-educated person has an easier time accessing medical care as well as obtaining needed information in the library or on the Internet. There is no difference in diabetes prevalence between males and females once age is controlled for. However, the diabetic life style may affect men and women differently. Women tend to be more willing to diet because the American ideal is a thin woman (Dan, 1994) and it is the cultural expectation. Therefore, women in Western societies are more likely to severely restrict their food intake, which should make it easier to adhere to the diabetic medical nutrition plan. Men on the other hand tend to engage in more vigorous physical exercise, which is one of the diabetes related health behaviors. There are also gender differences in self-treatment and men are less likely than women to utilize medical preventive care (Waldron, 1988). Thus health behaviors are culturally dependent and gender based, and we will consider the gender of the subjects. Age is important because the prevalence of type 2 diabetes increases with age. Also as mentioned earlier, small and large blood vessel diseases take time to manifest themselves. Therefore, the longer the person lives with diabetes, the more complications tend to develop and age and time lived with diabetes are correlated. According to the Health Belief Model, once the person with diabetes becomes more aware of symptoms, the perceived severity of diabetes increases. In addition, it is common to treat the 80- 45 diabetes and there is evidence that providers may communicate differently with those who are very old (Callahan 2000, Hall 1994). Hypothesis 5: Hypothesis 5.]: Those who are better educated are more likely to receive information on diabetes self-care from their providers. Hypothesis 5.2 : Those who are better educated are more likely to practice appropriate diabetes self-care behaviors when we control for information giving. Hypothesis 5.3: Those who are older are less likely to be counseled on, or referred to diabetes self-care education. 46 METHODS This study focuses on care provided within the setting of M-CARE, a managed care organization. All services required for medical treatment are a covered benefit for diabetic members, although members have varying amounts of co-pays for the services. Therefore, the study may not apply to the general population who has little or no coverage for services such as physician office visits, counseling or diabetic supplies, i.e. glucose monitoring strips. The study includes M-CARE’s Medicare population, which has limited prescription coverage, but this study does not examine medication compliance, rather it focuses on provider information giving and modeling and patient self-care behaviors, such as exercising, foot examination, glucose monitoring, and getting preventive care. M-CARE structure a_ng it_s membership M-CARE is part of the University of Michigan Health Systems (UMHS). M- CARE was founded to provide affordable medical care to the university’s staff and faculty. In subsequent years M-CARE expanded and enrolled private sector employers, such as GM, EDS, Chrysler and Pfizer. During the time of data collection, M-CARE was responsible for 13,000 Medicaid members, 177,000 commercial HMO members, and 6,000 Medicare members]. 7 The membership numbers are given for the year 2001. In the year 2002 Medicare membership was available in only two counties. 47 Approximately 50% of M-CARE’s medical care is delivered through the University Hospital System and its satellite centers. These centers, like the University’s Medical School are part of the University of Michigan Health System. Evidence based treatment and adherence to medical practice standards are emphasized. Furthermore, the University of Michigan Medical School receives funding for research and for demonstration projects. Therefore, funding is available for members with chronic conditions, including diabetes, to cover services under research grants that are not a covered benefit by other insurers. Thus, financial barriers are limited or removed for diabetic M-CARE members. M-CARE does not offer financial incentives to physicians for low utilization, and physicians are not financially responsible for the cost for diabetes education or diabetes self-care supplies. Therefore, there are no financial incentives for physicians to discourage person with diabetes to participate in diabetes self-care education. M—CARE ’s diabetes population M-CARE provides coverage to about 5,500 members with diabetes who live in the Southeastern Michigan area. HMO covers 57%, Medicare 38%, and Medicaid 5% of diabetic memberss. M-CARE sends a survey to its diabetic membership that explores recall of information and services received as well as attitudes for practicing self-care behaviors. Some of the questions were worded the same as the questions in the TRIAD survey from which the data for this study comes. According to the Diabetes Health 8 The overall diabetes rate at M-CARE is low because the mean age of members is only 29 years. Diabetes prevalence increases with age. 48 Status Questionnaire, the diabetic population is approximately 80% white, 10% Afi'ican- American and 10% other ethnicities. According to M-CARE’s Diabetes Health Status Questionnaire in 1998, 74% of M-CARE’s people with diabetes have some college education and 15% have benefited from graduate studies. In comparison, data from 1997 Blue Care Network diabetic surveys show that only 5.1% of the diabetic membership had a college degree of any kind. The BCN survey did not ask for graduate studies, therefore comparison at that level cannot be made, but it appears that M-CARE’s diabetic members are well educated. This may be important because a person who has a sound general education has less difficulty assimilating diabetes information compared to someone who lacks formal education. Data for this paper came from Translating Research into Action for Diabetes (TRIAD), a study that has been funded by the CDC. TRIAD is a multiple site national study however, the study population for this paper is limited to M-CARE’s type 2 diabetic membership. People with diabetes who are included in the study were diagnosed at least twelve months prior to the survey. 49 People with diabetes were identified through: 0 Pharmacy records: At least 1 prescription for insulin or oral anti-diabetic agent. 0 Hospital discharge diagnosis: At least one hospitalization with primary or secondary diagnosis of diabetes. 0 Laboratory test records: At least two hemoglobin Alc tests or fasting blood glucose measures in the past year. 0 Self-identification to the disease management nurse as person with diabetes and one outpatient visit or hospitalization during the past 18 months. Study subjects came from a random sample of diabetic M-Care members. At the UMHS where access to lab data is available, members who met above criteria and had a Hemoglobin A1,, > 9.0 were over sampled to ascertain adequate representation of participants with different levels of glucose control. 50 The following exclusion criteria applied to potential subjects: 1. Patients who report having type 1 diabetes; 2. Patients with onset of diabetes before age 309 ; 3. Patients who report m); having “diabetes or a blood sugar problem”'°; 4. Patients who are not able to consent for themselves; 5. Patients who do not speak English; 6. Patients who do not receive their diabetes care from a primary care physician (i.e., patients who receive their diabetes care from an endocrinologist). From each health system about 400 patients who met selection criteria were selected, with over-sampling of patients with HbAlc > 9.0 % (those are members who are poorly controlled, hemoglobin Ale should be below 7 %). In order to increase people with diabetes from minority groups and those of lower SES, practices that serve disproportionately low income and racial minority patient populations were included. Self-administered questionnaires were mailed to eligible subjects. The surveys explored the member’s perception of his/her health, life style activities, diabetes care, provider information regarding self-care, as well as participation in diabetes education. The questions were formulated before I joined the study team and therefore are not worded exactly to correlate to the measures of this study. 9 Young patients are excepted because most people with diabetes who develop the disease before age 30 are type 1 and the study is limited to type 2 diabetics. '° Those who report that they do not have diabetes are either in the very early stages of the disease or may have landed by error in the diabetes registry. 51 The initial contact letters were sent from M-CARE on M-CARE letterhead stationery and signed by the M-CARE Medical Director. With the initial letter, contact information was provided and a pre-addressed stamped envelope was enclosed to allow potential study subjects to opt out of the study before the Informed Consent form and survey were mailed. At least two weeks were allowed for responses from mailings. The researchers did not contact potential subjects who opted out in order not to pressure any one to participate; this was a mandate of the University of Michigan Internal Review Board approval. However, according to protocol, members who did not opt out were mailed reminders or contacted by phone if the survey was not returned. This resulted in a total of 1649 surveys from members. 52 Variables selected M flip study m their measures Provider behavior Provider information giving and modeling: There are five questions that explore recall of provider advice for a specific area of self-care. According to clinical guidelines, the diabetic diet, and blood glucose should be reviewed and monitored during each visit (American Diabetes Association 2001; Michigan Quality Improvement Consortium 2000). One could argue that it would be possible that the person with diabetes might have been taught or advised by the team, but the patient may not remember. However, according to American Diabetes Association’s guidelines, people with diabetes need to be seen by their provider a minimum of two times a year, more often if there are complications or if control is lost. It is difficult to imagine that someone reviewed diet, exercise and blood glucose levels twice in the last twelve months and the patient cannot remember being advised a single time. Additionally, if a patient cannot remember being asked about diabetic diet, exercise or blood glucose monitoring, then the communication was ineffective. Kravitz (1996) found that recall of self-practice recommendations varied from 90 to 24% but the study measured will from one visit. not from repeated visits and repeated recommendations. Sometimes when someone does not remember it indicates that if it was indeed communicated, the communication was not made relevant and/or it was not clear so that the patient could not assimilate the information. 53 Question 16: For the next set of items, please indicate if your current doctor or other health care provider (such as diabetes educator or nurse) in your doctor’s office explained to you, showed you, or gave you information about the following: Yes No Unsure A How to care for your feet? C How to exercise appropriately? D What is a good number for your blood sugar? Question 35: During the past 12 months, have you received any of the following types of diabetes related information from your doctor’s office or health care plan? Yes No Unsure Diabetes materials (e. g. pamphlets or newsletters, audiotapes or videotapes) Information about diabetes education (such as support groups or one-on-one counseling, advice services, or Internet sites)? Provider modeling During the regular office visit the provider performs some of the same activities that the patient is expected to practice at home. Thus the provider reviews the blood glucose log from home with the patient and demonstrates or models how to make decisions based on the recorded blood glucose levels. Likewise the provider inspects the feet in similar ways as the patient is expected to examine his/her feet at home. Thus the 54 provider demonstrates and models the self-care behaviors that are expected from the person with diabetes during regular office visits. Question 20: Does your doctor or some other health care provider in your doctor’s office review your home blood/urine sugar test results at each visit? (Yes, No, Not Sure) Question 22: During the past year, how ofien did your doctor or some other health care professional examine your feet with your socks off? Every visit; most visits; at least one of the visits; none of the visits; not sure Question 23 .' When was the last time a doctor or other health professional tested the feeling in your feet or legs by touching them with a monofilament (which looks like a short piece of fishing line)? During the past 12 months; more than a year but less than 2 years; more than 2 years; never; not sure Participation in Self-Care Education Diabetes self help classes for this population are certified by the Michigan Department of Community Health. The curriculum is standardized and includes information about the disease process, complications, diet, exercise, diabetes medication, influenza vaccination, retina examinations and blood glucose testing as well as medical standards of care. Likewise patients are referred for individual teaching to Certified Diabetes Educators who follow the standards of the American Diabetes Association and the Association of Diabetes Educators and cover the same areas of self-care. 55 Question 36: During the past 12 months, have you used any of the following diabetes- related services or attended any of the following diabetes-related programs Yes No A diabetes support group One-on-one or group diabetes education Measures for diabetes self-care There are several questions concerning self-care in the survey. Self-care that can be divided into home based self-care, such as exercise, blood glucose monitoring and foot examinations. Then there are two office based self-care behaviors, such as influenza vaccination and retina examination. However, as mentioned earlier, the patient can obtain those services independently without provider support. Exercise Question 95 : Think about the extra time you yourself spend taking care of your diabetes- related health problems. (Related problems might include high blood pressure, high cholesterol, or heart and circulation problems). On a typical day, how many minutes do you spend exercising? Blood Glucose Monitoring Question 1 7: Do you test your blood sugar levels at home? (Yes, No) 56 Foot Examination Question 42: Do you or someone in your home check your feet for sores every day? Yes, No Flu Shots Question 27: Did you get a flu shot during the past 12 months? Yes, No Retina Screening Few people with diabetes will understand the difference between a “regular visit to the ophthalmologist” and a dilated eye exam, hence this question is rather explicit. Question 21: When was the last time you had an eye exam in which your pupils were dilated (drops in your eyes that make you temporarily sensitive to bright light)? During the past 12 months; more than a year but less than 2 years ago; more than 2 years; never; not sure 57 Background variables Complications (severity of disease) The person with the more severe diabetes is more likely to be referred for diabetes counseling or to be counseled by the practitioner (Koltun 1986). Therefore it is important to control for the severity of the disease. As stated earlier, type 2 people with diabetes who have developed symptomatic complications are more severely ill and in the advanced stages of diabetes. Complications increase with time lived with high blood glucose levels. The survey asks directly for the presence of heart disease, which is the outcome of large blood vessel disease, and it is preceded by small blood vessel disease. Therefore, people with diabetes who have been told that they have or had heart disease, coronary bypass surgery, stroke or angioplasty are experiencing the complications associated with advanced diabetes. According to the Health Belief Model, this makes the threat from diabetes complications more salient to the patient. Also some people may be willing to change their life-style once their life is threatened. Therefore the ratio of cost of self-care to the threat from diabetes is changing in favor of self-care when complications develop. Question 38: Have you ever been told by a doctor or someone in your doctor’s office that you have had a heart attack, a “coronary” or a “myocardial infarction”? Yes No Question 39: Have you ever been told by a dbctor or someone in your doctor’s office that you have had a stroke, cerebrovascular accident, blood clot or bleeding in the brain or a transient ischemic attack or “mini-stroke”? Yes No 58 Question 40: Have you ever had any of the following procedures: A Surgery to bypass or unclog arteries to your heart. Yes, No, Unsure B Angioplasty or a balloon to unclog arteries to your heart or leg. Yes, No, Unsure C A toe, foot, or leg amputation Yes, No, Unsure Demographic measures Gender Question 10: What is your gender? Male Female Age: Question 9: What is your birth date? (month/day/year) Education and Income Question 100: What is the highest grade of school that you completed? 8th grade or less Some high school, but did not graduate High school graduate or GED Some college or 2-year college degree 4-year college graduate More than 4-year college degree 59 Question 99: Which income category below best describes your total annual household income before taxes? Less than $5,000 $5,000 to under $7,500 $7,500 to under $10,000 $10,000 to under $12,500 $12,500 to under $15,000 $15,000 to under $20,000 $20,000 to under $25,000 $25,000 to under $30,000 $30,000 to under $35,000 $3 5,000 to under $40,000 $40,000 to under $75,000 $75,000 to under $100,000 $100,000 or above Ethnicity Question 102: What is your race? Please select all that apply. American Indian or Alaska Native Asian, if Asian then Chinese, Filipino, Japanese, Korean Asian (or East) Indian Native Hawaiian Pacific Islander Black or African American White Other, specify 60 The data was collected via surveys by M-CARE as part of the national Translating Research into Action for Diabetes (TRIAD) research project. The data needed to be formatted and coded for analysis. 61 Coding 9&1 variable computation The following section describes the recoding process and quality assurance after the recoding to assure accuracy of the data and adherence to the study protocol. All subjects who stated that they were diagnosed with diabetes before age 30 were removed from the data to follow the original study protocol and to ascertain that the data contain only subjects with type 2 diabetes. That left 1439 cases for analysis. Next the variables were recoded. Respondents who answered that they were “not sure” whether they received information from their providers were coded as “no”. As previously mentioned, if a person with diabetes cannot remember being taught or receiving information then for this study’s purposes the person with diabetes could not have acted upon the information. Female was coded as “0”, male was left as “1”. Thus female becomes the reference. Next the subjects’ ages were calculated based on the birth date. The data on retina examination was dichotomized into those that had a retina examination in the last 12 months and those who did not. Income was originally coded in uneven intervals; therefore it was recoded as income in thousands with the midpoint in each category. Afier the recoding was completed, summary frequencies of original and recoded variables were compared. They matched. A random check on every 25th case comparing values within cases showed no errors and the data were considered clean and ready for analysis. 62 Aggregated measures and indexes The next paragraph describes the method for developing aggregate measures that were used for various analyses, either to investigate the effect of aggregated behaviors or to create proxy measures when specific measures were not available. First aggregate measures for self-care were computed. Self-care at home includes minutes of exercise per day, blood glucose monitoring and foot care. Foot care and blood glucose testing were dichotomous categorical variables. Minutes of exercise ranged from “0” to “300” per day. Therefore, exercise was standardized. An index score for home-based self-care was calculated by taking the mean of standardized exercise, home blood glucose monitoring and foot inspections. In the same manner an index score for office-based self-care was created by averaging the responses to “influenza vaccination” and “retina screening”. Then the two index scores for office and home based self-care were added to create an index for “overall self-care”. Next an index score for “complications” was calculated by adding the number of complications such history of stroke, heart attack, amputations, coronary artery bypass graft and angioplasty. In the same manner an index score for provider information giving was created to be used as proxy for information on influenza vaccination and retina examination because there were no specific questions for information giving regarding flu vaccinations and retina examinations. Likewise an index score for diabetes education was created by calculating the mean of one on one education and using a diabetes support group. 63 Because of the interest of diabetologists in Asians, there were six choices for Asian ethnicity, but all six categories totaled only 38 subjects1 I; there were only 34 subjects who classified themselves as “Hispanic”; 187 subjects who classified themselves as “Black”; 84 who classified themselves as “other” and 1095 subjects who classified themselves as “White”. Therefore the variable was collapsed into three categories: White, black and other. Table2: Ethnicity Outliers The data was examined for outliers. One case was identified as outlier for exercise. The person stated that he exercised 8 hours every day because of his diabetes. The subject was a Japanese male; age 47 years with a graduate degree and a BMI of 35. He had been diagnosed with diabetes at age 33 and was using three insulin injections per day. This raised several concerns: Any physically active person diagnosed at age 33 using 3 insulin injections per day may be a person with type 1 diabetes. Furthermore, it is difficult to believe that a working " Tuomiletho 2001 stated that Japanese type 2 diabetics are different from western type 2 diabetics, because their bodies remain lean throughout the disease while westerners become obese. 64 adult will exercise 8 hours a day because of the diabetes and still have a BMI of 35, which is considered “morbid obesity”. There were two more people with diabetes who stated that they exercised five or four hours every day. However, the question did not define the intensity of exercise, thus someone might play golf for four hours a day. Those two subjects did not have a high BMI and therefore those two cases were not excluded from the analysis. The minimum weight was only 85 lbs, which is surprisingly small in a diabetic sample. However, upon investigation, this turns out to be an 80-year old black female who was only 5’3”tall who had a stroke and did not feel well. Therefore, this is a believable weight and was not excluded from the analysis. The maximum weight was 500 lbs and initially seemed excessive. However, upon investigation this is a 5’8” tall white female who does not exercise and does not state that she follows a diabetic eating pattern. Her sole method of diabetes treatment is oral medication, therefore she was not excluded either because people with diabetes develop morbid obesity unless the metabolic disorder is controlled. Under those conditions her weight becomes believable. Both OLS and logistic regression studies were used for analysis. In the first block the background variables were entered in order to control for them. Those included demographics (age, education, gender, ethnicity, income), the complications index score (patient had history of heart attack, coronary bypass surgery, angioplasty, amputations) and years lived with diabetes. In the second block the variables of interest were entered, such as provider information giving 65 and provider modeling of diabetes self-care behaviors. Whenever information regarding the dependent variable or modeling is part of standard diabetes education curriculum, seeing a diabetes educator was also entered as dependent variable because the diabetes educator can be looked upon as “part of the provider staff”. For regression studies a “listwise” deletion method was used which explains varying sampling sizes in the analysis. The only exception is the “provider blood glucose log review”. That question had too many missing values that needed to be replaced with the mean. For each OLS regression the standardized residuals were plotted against the standardized expected values. The residuals were randomly distributed along the expected regression line; for minutes exercised a square root transformation was needed to achieve a more normal distribution of residuals. 66 RESULTS The preceding sections have explored diabetes treatment, physician and patient roles, theories of health behavior, developed the hypotheses and the methodology. The following section describes the results of the data analysis. As mentioned earlier the data were collected from a sample of M-CARE diabetic members and are part of the national TRIAD study, which is ongoing and funded by the Centers for Disease Control. The survey was developed and the data collected before I became involved with the research. Therefore, the wording of the survey questions is not always as specific to the measure as it could be and at times indexes were created by aggregating similar measures and have been used for analysis. Sample Description During the next few paragraphs we will look at the sample compared to M- CARE’s diabetic membership, distribution of continuous variables, self-care behaviors, provider practice behaviors and finally missing data. Once the data were cleaned to fit the study protocol, there were 1438 subjects in the sample. 728 subjects (50.6%) were female, and 709 (49.3%) male, one subject did not identify the gender. The mean age of the sample was 65.2 years, the median age was 68.2 and the mean education was just short of a four-year college degree. Mean income was somewhere around $41,300 per year; the median income was $27,500. The following table describes the distribution of the continuous data collected, demographics, 67 years since diagnosed with diabetes and the number of minutes exercised per day to control diabetes. Table 3: Descriptive summary of continuous variables Tvariables' ‘ '1 N ”Minimum ' Maximum M Mean . Median fitandard . . W. ,, , . , ,, dev. Age. 1364 30 91 65.2 68.2 11.9 Weight 1405 85 500 201.4 195.0 49.8 BMI” 1397 15 78 31.9 30.5 7.1 Years since diabetes 1360 1 51 12.0 9.5 8.9 diagnosis Complications index 1329 0 l . 14 0.0 .22 Income in thousands 1142 <5 > 100 41.3 27.5 37.9 Education 1377 <8‘h grade > 4yrs college Some college H.S grad 10 yrs Minutes of exercise/day 121 l 0 300 21.3 15.0 28.1 Square root transformed 121 l 0 17.3 3.5 3.9 3.0 exercrse Home based self-careI 1438 0 2 .49 .5 .29 Office based self-care2 1432 o 3 1.66 2.0 .46 Overall self-care 3 1432 o 4 2.15 2.25 .56 Provider information4 1319 0 1 0.7 0.8 0.3 giving index Provider modeling index 1428 0 3 1.2 1.3 0.9 " Anyone less then 30 years of age was deleted from the data to ascertain that the database contained only type 2 diabetics. That was in line with the TRIAD study protocol. ' BMI: up to 25 is normal weight; 25-30 is considered over weight, 2 30 is considered obese This sample is comparable to other samples taken from M-CARE’s diabetic population. Subjects had been diagnosed with diabetes for at least one year. As discussed previously, the prevalence of diabetes increases with age, thus the diabetic ' Home based self-care is the mean of monitoring feet, blood glucose and standardized exercise 2 Office based self-care is the mean of obtaining an influenza vaccination and retina examination 3 Overall self-care is the sum of office based and home based self-care ‘ The provider information giving index is the mean of all information giving by the provider and staff 68 population is older than the general population and most are obese or overweight, as is expected in a population with type 2 diabetes in the United States. The next table gives a description of the dichotomous variables and the overall distribution of self-care, provider behavior and diabetes complications. The table is intended to provide a general sense of patient and provider behavior in this sample. 40.8% of participants had developed at least one complication. The table indicates the number of answers to each question and the subjects who answered affirmative. Table 4:_Summary of self-care and provider behavior variables 4 . .. - gvaaasrzg‘”" " ‘ "’ " ' ' “Tatar Answered ‘ " "%‘fofsmpre’ ;j , ._ , .. L . j 3 _ ., . . Answers Yes . .. answered “yes” Patient Self-care Variables Patient monitors blood glucose 1432 1164 80.9 Patient examines feet 881 470 32.7 Patient had influenza vaccination in last 12 month 1419 935 65.0 Patient had retina examination in the last 12 months 1414 1086 75.5 Patient used one on one diabetes education 1302 163 11.3 Patient used diabetes support group 1307 61 4.2 Patient Reported Provider Behaviors Provider gave blood glucose information 1281 1060 73.7 Provider gave exercise information 1293 816 56.7 Provider gave foot care information 1312 894 62.2 Provider checked glucose log 101 l 479 33.3 Provider checked feet 1411 1081 75.2 Only 33.3% of the subjects stated that their providers checked their blood glucose log, while foot monitoring with the recommended filament was provided to 75.2% of the diabetic members. 32.7% checked their own feet at home and 80.9% of the subjects monitored their home blood glucose and 75.5% stated that they had a retina examination 69 within the last twelve months. Only 11.3% of the subjects stated that they received diabetes education in the last year. Participants were permitted to skip questions and therefore there are not 1438 responses to all questions, thus the varying subject numbers in the tables and the regression studies. The following table shows the number of responses to each question and the percent of missing responses. Income, patient checks his/her feet and provider checks blood glucose log are the questions with the most missing answers. The following table shows the number of replies to each question and the percent of non- missing and percent missing answers. 70 Table 5: Missing Variables . -, . . _. , w VéfiEEIES —. .. , 53743911 I”? M19196"; " Patient Demographic Variables Age 1429 0.7 Education 1 3 77 4.2 Ethnicity 1438 0.0 Gender 1437 0.0 Income 1142 20.6 Patient exercises 121 1 15.8 Patient checks feet 881 38.7 Patient monitors blood glucose at home 1432 0.4 Patient received retina examination 1414 1.7 Patient received influenza vaccine 1419 1.3 Complications Patient had a stroke 1315 8.5 Patient had a heart attack 1314 8.6 Patient had amputation 1291 10.2 Patient had coronary bypass surgery 1314 8.6 Patient had angioplasty 1305 9.2 Years since diabetes was diagnosed 1360 5.4 Provider Behaviors f Provider gives information on foot care 1312 8.8 Provider gives information on blood glucose 1281 10.9 Provider gives information on exercise 1293 10.1 Provider checks patient’s feet with filament 1237 14.0 Provider checks patient’s glucose log 1011 29.7 Provider examines patient’s feet 1411 1.9 Now that we have a general understanding of the overall distribution of patient self-care, provider information giving and health status the paper will proceed to display the results of hypothesis testing. Each self-care behavior was tested independently to measure the impact of provider information giving or provider modeling while controlling for patient characteristics, such as demographics and diabetes complications. The patient characteristics were entered in the first block; the main independent variable(s) were entered in the second block. 72 Hypotheses testing gig data analysis The following section will display the results of hypothesis testing for specific self-care behaviors as dependent variables and then for aggregate self-care behaviors. Thereafier we will look at the results of hypothesis testing for diabetes education and demographics as dependent variables. Self-care activities Self-care behaviors were examined comparing each specific self-care behavior to specific advice/information given or specific provider modeling whenever possible. Whenever there was no specific question to match the self-care behavior (retina examination and influenza vaccination), the provider information giving index5 was used as proxy. Thereafter the summary indexes for home based self-care, office based self- care and total self-care were examined using the same method. The results are reported according to self-care behaviors and all hypotheses that deal with the behavior. Hypothesis 1.1: People with diabetes who recall their provider’s advice to engage in specific diabetes self-care activities (blood glucose testing, exercise, foot examination) are more likely to report practicing that self-care behavior. 5 The information giving index is the mean of all information giving by the provider and staff 73 Hymthesis 1.2: Those who receive more self-care advice from their provider are more likely to engage in office based self-care behaviors (influenza vaccination and retina examination Hypothesis 2: When the provider models self-care behaviors the patient is more likely to practice self-care behaviors. Hypothesis 2.1:When people with diabetes recall that the provider examined the home blood glucose log; the patient is more likely to monitor his/her home blood glucose levels. Hypothesis 2.2: When people with diabetes recall that the provider examined his/her feet, the person with diabetes is more likely to report examining his/her own feet at home. Hypothesis 3.2: Those who receive diabetes education are more likely to practice appropriate self-care behaviors. Hypothesis 5.2: Those who are better educated are more likely to practice appropriate diabetes self-care behaviors. Specific self-care behaviors Home blood glucose testing: Those who test their blood glucose levels at home and those who do not were compared and whether they received information on blood glucose levels and whether their provider examined the blood glucose log during office visits. Table 5 displays the results of Logistic Regression listing the Beta, Exp(B)[odds 74 ratio], and Wald statistic. As always, demographics, complications and years since diabetes diagnosis have been controlled for. Table 6: Logistic regression: The effect of patient characteristics and provider information giving and modeling on home blood glucose monitoring Dependent variable: Home blood glucose monitoring Variables Hypothesis 1: Provider Hypothesis 2: Provider information giving n=102~5 . .. (modialingn?= 1057 B 5 ’ Exp (Bf Ward 13' ' Exp-(B) ' Ward - 19411:" toads . Ratio] ' Ratio} * Constant 1.505 4.598‘ 2.615 15.325 Age -.025 .980 5.555 -.025 .976 8.480“ Education —.1 16 .891 2.316 -.099 .906 1.850 Black ethnicity -.360 .698 1.747' -.367 .693 1.976 Other ethnicity -.676 .509 5.180 -.637 .529 5.490“ Gender -.297 .743 2.556 -.252 .777 2.027 Income in thousands .002 1.002 .541. .002 1.002 .356 Complications index .263 1.300 6.204' .314 1.369 9.493" Years since diabetes diagnosis .081 1.085 32.964‘” .067 1.070 27.4621‘” Patient saw diabetes educator 7.811” 10.741". Provider gave blood glucose 31.379”. information Provider monitors log Cox-Snell R2 .094 Nagelkerke R2 .156 .106 *p 5 0.05; " p 5 .005 m p 5 .00 (all probabilities are two tailed) All patient characteristics were entered into the regression; the Nagelkerke R2 was .089; when provider information giving was added it increased to .156. Likewise the Cox & Snell R2 increased from .054 to .094 when provider information giving was added to the patient characteristics. The numbers come from the first block analysis and are not given in the table. The block is significant at p 5. 001. When we control for 75 demographics and diabetes complications, seeing a diabetes educator is significant with an odds ratio of 2.788 and p=. 005. However, the strongest predictor, controlling for all other factors, is provider information giving regarding blood glucose testing. The odds ratio is 3.204 and it is significant at p g .001. The model is significant and information giving about blood glucose levels is the most significant predictor for monitoring blood glucose. The data support the Hypothesis 1.1: People with diabetes who recall their provider’s advice to engage in specific diabetes self-care activities (blood glucose testing) are more likely to report practicing that self-care behavior. Provider modeling by evaluating the home blood glucose log and evaluating the control is not significant; however receiving individual diabetes education6 is significant at p 5 .001. All patient characteristics without information giving resulted in a Nagelkerke R2 of .085; when modeling was added it increased to .106. Likewise the Cox & Snell R2 increased from .051 to .064 when provider information giving was added. The model is significant at p _<_ .001; the block is significant at p=. 007. The increase is due to seeing a diabetes educator who will monitor the home blood glucose log in order to monitor the outcome of self-care. The data support hypothesis 2.1:When people with diabetes recall that the provider examined the home blood glucose log the patient is more likely to monitor his/her home blood glucose levels. More schooling or education does not increase home blood glucose monitoring. Education is not significant and the Exp(B) is only .891. The data disconfirrn hypothesis 6 During individual diabetes education, the educator checks the blood glucose log and thus models how to evaluate glucose levels and adjust medication and life style accordingly. 76 5.2: Those who are better educated are more likely to practice appropriate diabetes self- care behaviors. Patient foot monitoring: Next the data was analde for foot monitoring at home in the same manner (see Table 6). The independent variables are information giving regarding foot care and provider modeling foot examination. Demographic factors, complications and years lived with diabetes have been controlled for. Table 7: Logistic regression: The effect of patient characteristics and provider information giving or modeling foot care on foot examination. Dependent variable: Foot monitoring Variables Hypothesis ’1: Provider Hypothesis 2: Provider information giving F698 modeling n=703 B Exp (B) Wald B Exp (3) Wald - IOrIds [Odds ‘ Ratio} Katie] Constant .021 .659 —.326 .270 Age .002 1.002 .068 .000 1.000 .002 Education -.O3O .970 .178 -.027 973 .150 Black ethnicity .070 1.072 .283 .119 1.127 .872 Other ethnicity -.053 .948 .278 -.098 .907 .990 Gender -.151 .860 .767 -. 169 .845 1.008 Income in thousands -.075 .928 6.027' -.007 .993 8.079“ Complications index 1.028 2.796 4.445' .207 1.238 6.691 W Years since diabetes -.014 .986 .955 -.004 .999 .005 diagnosis Patient saw diabetes .519 1.680 4.351‘ educator Provider gave foot care 1.271 3.564 52.291. information W Provider monitors feet .554 1.740 50.205." Cox-Snell R2 .1 19" .106‘ Nagelkerke R2 .159” .142“ ‘p 5 0.05; " p 5 .005 “" ; p 5 .001 (all probabilities are two tailed) 77 When only patient characteristics were entered into the regression, the Nagelkerke R2 was .05; when provider information giving was added it increased to .159. The Cox & Snell R2 increased from .037 to .119 when seeing a diabetes educator and provider information giving were added. Those numbers came from the first step and the numbers are not given in the table. Provider information giving is the strongest and most significant predictor for patient foot care. The provider giving the information is more effective than seeing a diabetes educator. The data support Hypothesis 1.1 for foot examinations: People with diabetes who recall their provider’s advice to engage in specific diabetes self-care activities (foot examination) are more likely to report practicing that self-care behavior. When provider modeling foot examinations was added to the patient characteristics the Nagelkerke R2 increased fiom .053 to .142 and the Cox & Snell R2 increased from .040 to .106 when provider modeling was added to patient characteristics. The block and the model are significant at p z .001. Thus hypothesis 2.2 that provider modeling of foot examination increases patient foot care is supported. The model was significant at p 3.001 and the odds ration was 1.740. The impact of the patient’s education level on foot monitoring is not significant and the Exp (B) is only .97. The data disconfirrn hypothesis 5.2 for foot monitoring. Exercise behaviors: Exercise was stated in “extra minutes spent on the average day, due to diabetes”. As previously, demographics, complications and years lived with diabetes have been controlled for. As mentioned earlier a square root transformation was 78 performed to achieve a random distribution of residuals. The following table displays the results of OLS regression of exercise and exercise information giving. Table 8: OLS regression: The effect of provider information giving and patient characteristics on exercising (square root transformation of exercise) Dependent Variable: Minutes exercised per day n=912 Variables Unstandardized Standardized t . . , , Coefficient Coefficient Constant 1.984 2.644" Age 6.098E-03 .024 .633 Education .185 .080 2249‘ Black ethnicity .218 .047 1.463 Other ethnicity 3.282E-02 .009 .277 Gender 8.280E-02 .014 .422 Income in thousands -5.894E-03 -.076 -2002‘ Complications index -3.817E-02 -.013 -.393 Years with diabetes -1.475E-02 -.042 -l .240 Patient saw diabetes educator .581 .067 2.119. Provider information on exercise 1.006 .161 5.098". R2 .041 F value 4.638." *pg 0.05; ” pg .005 m pg .001 (all probabilities are two tailed)7 All patient characteristics were entered into the regression, the Nagelkerke R2 was .002; when provider information giving was added it increased to .041; the increase is 7 ' Home based self-care is the mean of blood glucose monitoring, checking of feet and standardized exercise b Office based self-care is the mean of influenza vaccination and retina examination ° Overall self-care is the sum of home based and office based self-care ‘ Provider information giving index is the mean of all information given ‘ Provider modeling is the mean of provider monitoring the blood glucose log and examining feet. 79 significant at pg. 001, a beta of .161 and an unstandardized coefficient of 1.006; diabetes education is also significant at p=. 034 but the beta is only .067 and unstandardized coefficient is .581. Overall the slopes are very small because of the square root 6619’ transformation of minutes exercised. However a square root increase of could for example increase the square root from 6 to 7 thus the amount of exercise increases from 36 minutes to 49 minutes per day. The data support the hypothesis 1.1: People with diabetes who recall their provider’s advice to engage in specific diabetes self-care activities (exercise) are more likely to report practicing that self-care behavior. The patient’s education level has a significant effect on exercising. The beta is .08 but it is significant at p = .025. The data support hypothesis 5.2 for exercise: Those who are better educated are more likely to practice appropriate diabetes self-care behaviors, in this case exercise This concludes the analysis of home based self-care behaviors and the next section examines self-care behaviors outside the home. Influenza vaccination: We will look at influenza vaccination. According to clinical treatment standards the influenza vaccination should be given once a year between October and February. There is no specific question in the survey whether or not the provider gave information regarding the influenza vaccine; therefore the information giving index was used as proxy. The information giving index has a range from “0” to “1” as mentioned earlier. Demographics, complications and years lived with diabetes have been controlled for and entered in the first block; the provider information giving index is entered in the second block. The following table displays the results of 80 logistic regression concerning influenza vaccination and the provider information giving index. Table 9: Logistic regression: The effect of patient characteristics and provider information giving on obtaining influenza vaccination Constant Education Black ethnicity Other ethnicity Gender Income in thousands index Years since diabetes Provider information Cox-Snell Nagelkerke ‘ p_<_ .005 ‘" pg .001 (all probabilities are two tailed) When all patient characteristics were entered into the regression, the Nagelkerke R2 was .054; when provider information giving was added it increased to .094. Likewise the Cox & Snell R2 increased from .062 to .067 when provider information giving was added to the patient characteristics. The model is significant at p 5.001. The provider information giving index has an odds ratio of 1.716, a Wald statistic of 6.01 8 and a significance of p= .014. The data support hypothesis 1.2: Those who receive more self- 81 care advice from their provider are more likely to engage in self-care behaviors (influenza vaccination). Education also has a significant effect on obtaining the influenza vaccination. The p=. 007 and the Exp(B) = 1.78. The data on influenza vaccination support hypothesis 5.2: Those who are better educated are more likely to practice appropriate diabetes self-care behaviors. Next we will examine retina screening. Retina screening: As mentioned in the methods section, the measure was dichotonrized into those who obtained a retina examination in the last 12 months and those who did not. Again there was no specific question whether the subject received retina examination information and the provider information giving index was used as proxy. 82 Table 10: Logistic regression: The effect of patient characteristics and provider information giving on retina screening in the last 12 months Constant Education Black Other ethnicity Gender Income in thousands index Years since diabetes Provider information Cox-Snell < " p 5 .05 m p 5 .001 (all probabilities are two tailed) When all patient characteristics were entered into the regression, the Nagelkerke R2 was .053; when provider information giving was added it increased to .06. Likewise the Cox & Snell R2 increased from .035 to .039 when provider information giving was added. Again these R2 values come from the stepwise entry method and the data are not displayed in the table. The model is significant at p = .027 and the increase is significant at p 5.001. Thus the data support hypothesis 1.2: Those who receive more self-care advice from their provider are more likely to engage in self-care behaviors (retina examination). 83 Education also has an effect on obtaining retina examination with an Exp(B) =1 .159 and p = .029. The provider information giving index has an odds ratio of 1.710 and the data support hypothesis 5.2: Those who are better educated are more likely to practice appropriate diabetes self-care behaviors. In the previous section we have measured the effect of provider information giving and behavior modeling, when appropriate on specific self-care behaviors such as blood glucose testing, foot examination, exercising, obtaining influenza vaccination and retina screening while controlling for demographics, complications and years lived with diabetes. The following section will test index measures for office based, home based as well as the overall self-care behavior indexes. Demographics, complications and years lived with diabetes are again controlled for. Aggregated Self-Care Analysis Aggregated self-care behavior indexes are 1. The mean of reported home based self-care behaviors, in this case standardized minutes exercise, foot monitoring and home blood glucose monitoring. 2. The mean of reported office based self-care behaviors, in this case influenza vaccination and retina examination. 3. Overall self-care, which is the sum of office, based self-care behavior and home based self-care behavior. The aggregated self-care behaviors are the dependent variables and the provider information giving index and the modeling index are the independent variables. 84 Oflice based self-care Office based self-care is the mean of obtaining influenza vaccination and retina 661” examination. Both are dichotomous variables with values of “0” and . The main independent variable is the provider information giving index and provider modeling index. The provider information giving index is the mean of all information giving. The modeling index is the mean of modeling the evaluation of the glucose log and demonstrating foot examinations. The following table displays the results of OLS regression. 85 Table 11: OLS Regression: The effect of patient characteristics and provider information giving and modeling on office based self-care behaviors Dependent variable: Office based self-care Variables Hypothesis 1: Provider Information. . . Hypothesis 2; Provider modeling ' . ' giving n=1047 ‘ ‘ 114052 Unstandardizet Standardiud . t Unstandardiur Standardized t Coefficient Coefficient Coefficient ' Coefficient Constant .812 7.346'“ .896 8546'“ Age 8.624E-.03 .224 6.216’“ 8.026E-03 .210 5885‘" Education 3.655E-.02 .108 3.157“ 3.082E-02 .092 2.683" Black -3.277E-.02 -.048 -1.565 -3.854E-02 -.057 -1.845 ethnicity Other ethnicity 1.276E-02 .023 .759 9.668E-03 .018 .586 Gender -3.526E-03 -.004 -. 127 6.062E-04 .053 1.451 Income in 6.323E-.04 .054 1.497 -9.769E03 -.01 l -.353 thousands Complications -1.473E-02 -.034 -1.068 -7.822E-03 -.018 -.575 Index Years since 50171303 .098 2.998” 4.8020E-03 .095 2.924‘ diabetes diagnosis Patient saw 5.078E-02 .039 1.281 4.925E-02 .038 1.253 diabetes educator Provider information giving index 5.744E-02 Provider modeling index R2 .078 .077 F value 8743‘" 8.695‘“ ‘p 5 0.05; " p 5 .005 ‘" p 5 .001 (all probabilities are two tailed) When all patient characteristics were entered into the regression, the Nagelkerke R2 was .067; when provider information giving was added it increased to .078. The 86 .095. Seeing a diabetes educator does not increase office based self-care behaviors; it is not significant at p=.200. The data support hypothesis 1.2: Those who receive more self- care advice from their provider are more likely to engage in self-care behaviors. Office based self-care is also increased by provider modeling. The R2 increased from .063 to .077 and it is significant at p5.001, the beta was .110, and it was significant at p5.001. Seeing a diabetes educator was not significant in this model with p =. 210 and a beta of .03 8. Thus the data support hypothesis 2: When the provider models self-care behaviors the patient is more likely to practice self-care behaviors. Education also is significant for obtaining office based self-care. The beta = .21 and .224 and the p value is p= .002. Thus the data support hypothesis 5.2: Those who are better educated are more likely to practice appropriate diabetes self-care behaviors. Home based self-care Next, the effect of information giving on home-based self-care was examined. The home-based self-care index is the mean of blood glucose monitoring, checking of feet and time spent exercising (standardized). The independent variables are provider information giving index and provider modeling index. 87 Table 12: OLS Regression: The effect of patient characteristics and information giving and modeling on home based self-care Dependent variable: W Home based self-care villainous: , . . mouthed-Imam pat; “ ' 2t.:-.::-- ‘ j " _n= * momentum“ «1:943 . _ 1974.4 - genus-riders: :‘SMdlrdiifll at. amusement-durum ' t dCoefieient- Coefficient- , , . Coefficient . enemas-rt . Constant .265 4.458‘“ .412 6967'“ Age l.535E-.04 .007 .206 -7.249E-O4 -.034 -.946 Education 1.293E-.O3 .007 .208 -8.849E-04 -.005 -.137 Black -l.471E-.03 -.004 —.130 -9.139E-05 .000 -.008 Other -1.215E-.02 -039 -1.338 -1.144E-02 -.037 -1.228 Gender -7.812E-.03 -.016 -.521 -4.462E-04 -.O68 -1.893 Income in -4.537E-.04 -.070 4990‘ -1.118E-02 -022 -.717 thousands Complications 7.93 7E-.03 .032 1.068 1.622E-02 .066 2.1 17' index Years since 2.248E-.03 .078 2.497‘ 3.155E—03 .109 3.397'" diabetes diagnosis Patient saw .105 .143 4.931‘” .120 .162 5.409'“ diabetes educator Provider .245 .305 information giving index Provider modeling 4.901E-02 index R2 .145 .087 F value 17.688‘” 9.884‘” ‘p50.05; " p5.005 ‘“ p 5 .001 (all probabilities are two tailed) When all patient characteristics were entered into the regression, the Nagelkerke R2 was .019; when provider information giving was added it increased to .145 and it is significant at p 5 .001. The beta for provider information giving is 0.305 and for diabetes education it is .143 when we control for patient characteristics. The data support 88 hypothesis 1.2 for home based self-care behaviors: Those who receive more self-care advice from their provider are more likely to engage in self-care behaviors. When all patient characteristics were entered into the regression and the R2. Adding the provider modeling index to the patient characteristics increased the R2 from .029 to .087 and is significant at p 5. 001. The beta for provider modeling is .165 it is significant at p 5 .001. Seeing a diabetes educator is also significant at p 5 .001 with an unstandardized coefficient of .120 and a beta of .162. The data for provider modeling also support hypothesis 2: When the provider models self-care behaviors the patient is more likely to practice self-care behaviors. Education did not have a significant effect on home based self-care behaviors and the beta was negative (-.005) for using the provider modeling index. The data do not support hypothesis 5.2 for home based self-care behaviors: Those who are better educated are more likely to practice appropriate diabetes self-care behaviors. Next we will study the relationship between provider information giving and modeling and the overall score of self-care combined office and home based self-care. Total self-care (Sum of home based and office based self-care indexes) The provider information giving index, one on one education and provider modeling index are the major independent variables, total self-care is the dependent variable. 89 Table 13: OLS regression: The impact of patient characteristics and provider information giving and modeling on aggregated total self-care8 Provider modeling index Dependent variable: Aggregate of all self-care behaviors Variables Hypothesis 1. Provider Hypothesis 2:Prov1dermodeling . informnongiwrngn=1038 Ill'lrm Unstandardiz standardize r Unstandardinet Standardized r d Coefficient costumer, , _ Coeflielent Coefficient Constant 1.073 8.352‘“ 1.306 10.586’“ Age 8.859E-.03 .193 5.496'” 7.334E-03 .161 4569'” Education 3.772E-.02 .094 2.804“ 2.976E-02 .074 2201‘ Black ethnicity -3.437E-.02 -042 -1413 -3.864E-02 -.048 -1.571 Other ethnicity 5.358E-.04 .001 .027 -1.800E-03 .003 -.093 Gender -1.118E-.02 -011 -.346 1.620E-04 .012 .329 Income in 1.805E-.04 .013 .368 -2.062E-02 -020 -.634 thousands Complications -7.158E-.03 -014 -.447 8.214E-03 .016 .513 index Years since 7.288E-.03 .119 3.748‘“ 7.953E—03 .131 4.099‘“ diabetes diagnosis Patient saw .156 .223 3.389" .169 .109 3.657'" diabetes educator Provider .380 .100 7.455“ information giving index R2 .124 .103 F value 14.726" 11.942‘” *p 5 0.05; “ p 5.005 *” p 5 .001 (all probabilities are two tailed) When all patient characteristics were added to the regression the R2 was .062. When we add provider information giving to the patient characteristics, the ' Aggregated self-care is the sum of home based self care (mean of exercise, foot monitoring and blood glucose testing) and office based self-care behaviors (mean of obtaining infl 90 information giving was significant at p 50.001. When we control for demographics and diabetes complications and provider information giving resulted in the greatest increase in self-care behaviors; The data support the Hypothesis 1.1: People with diabetes who recall their provider’s advice to engage in diabetes self-care activities are likely to report practicing that self-care behavior. When we add the provider modeling index (mean of provider examines feet and provider examines home blood glucose log) to the patient characteristics the R2 increased from .060 to .103. Provider modeling is significant at p 5. 001with a beta of .170 and an unstandardized coefficient of .106. Seeing an individual diabetes educator is also significant at p 5.001 with an unstandardized coefficient of .169 and a beta of .109. The data support hypothesis 2: When the provider models self-care behaviors the patient is more likely to practice self-care behaviors. In this model education has a significant effect on overall self-care behaviors with a p=. 005 and a beta =. 094. The data support the hypothesis 5.2: Those who are better educated are more likely to practice appropriate diabetes self-care behaviors. This concludes the results for self-care behaviors and provider behaviors. In summary the data support the hypothesis 1.1 for home blood glucose monitoring, exercise, and foot examination, hypothesis 1.2 for influenza vaccination and retina examinations and overall self-care behaviors, both home based and office based. The data also support hypothesis 2 that provider modeling will increase diabetes self—care behaviors. The data also support hypothesis 5.2 that those who are better educated, practice more appropriate self-care. 91 behaviors. The data also support hypothesis 5.2 that those who are better educated, practice more appropriate self-care. The next analysis explores using diabetes education and the impact on self-care, in this case the mean of blood glucose testing, exercising, checking feet, obtaining influenza vaccine and retina examination. Diabetes education is the mean of attending a diabetes support group and seeing a diabetes educator one on one. Table 14: OLS Regression: The effect of patient characteristics and diabetes education on diabetes self-care behaviors Dependent Variable: Aggregate of diabetes self-care behaviors n7 = 977 Variables Unstandardized Standardized t _ Coefficient ”Coefficient . , _ Constant 1.396 11.373'" Age 6.993E-03 .152 4.307‘" Education 3.704E-02 .092 2704' Black ethnicity -3.157E-02 -.039 -l .281 Other ethnicity -2.938E-03 -.004 -.151 Gender -1 .410E-02 -.013 -.429 Income in thousands 3.626E-04 .026 .725 Complications 1.698E-03 .003 . 105 Years with diabetes 9.607E-03 .157 4.934". Patient used diabetes educator or .323 .140 4.721“. support group R2 .082 F value 10.553". *p 5 0.05; " p 5 .005 ‘“ p 5 .001 (all probabilities are two tailed) When we entered the patient characteristics, the R2 was .063; when use of diabetes education was added the R2 was .082. Using diabetes education or a diabetes support group is a significant factor in increasing appropriate self-care behaviors with a p 92 Next we will explore the effect of provider information giving on participation in diabetes education activities. 93 Diabetes Education: Hymthesis 3.1: People with diabetes who recall receiving information regarding diabetes education are more likely to take advantage of diabetes education. The question asking, “Did you receive information about diabetes classes?” was used as predictor. The dependent variable is diabetes education. Table 15: Log Regression: Receiving information and use of diabetes education Variables B Exp(B) [Odds ratio] Wald , Constant -l .974 6.964" Age -.014 .987 1.984 Education .130 1.139 2.374 Black ethnicity -.058 .943 .167 Other ethnicity -.253 .776 2.963 Gender -.451 .639 5207' Income in thousands -.002 .998 .357 Complications index -.076 .927 .530 Years with diabetes .008 1.008 .416 Information about diabetes 1.029 2.797 18.250'" education Cox & Snell R2 .034‘“ Nagelkerke R2 .064’” ‘p 5 0.05; " p 5.005 ‘” p 5 .00] (all probabilities are two tailed) When all patient characteristics were entered into the regression, the Nagelkerke R2 was .027; when provider information giving was added it increased to .064. Likewise the Cox & Snell R2 increased from .014 to .034 when provider information giving was added. Receiving class information has a significant impact at p 5 .001 and odds ratio of 94 2.797 on participation in diabetes education. The data support the hypothesis 3.1: Persons who have diabetes and receive information regarding available diabetes education are more likely to use diabetes education. This concludes any testing for self-care in relationship to provider information giving, provider modeling and diabetes education. Table 15 summarizes the impact on self-care when we add the different factors into the model. Table 16: Summary of self-care and the impact of various factors ' Dependent Variable: Self-Care Variables; entered k I h i P value of model, R square of model. Demographics 6.872'” .037 Complications index 6.701 .042 Years with diabetes 7.553'” .054 Provider information 14564” .110 including diabetes education Provider modeling 11.942' .103 *p 5 0.05; " p 5.005 "W p 5 .001 (all probabilities are two tailed) As the above table summarized, demographics and years since diabetes diagnosis have a small but significant effect on self-care. Provider information giving and provider modeling have a significant relatively strong effect on self-care behaviors. Next we will investigate complications and their possible impact on seeing a specialist and on practicing diabetes self-care. 95 Disease complications Hymthesis 4.1: Those who are in the more advanced stages of diabetes are more likely to report using the services of a specialist. As mentioned earlier, for diabetes severity several complication measures have been aggregated, such as history of heart attack, amputation, stroke, and coronary bypass surgery. Years lived with diabetes was consistently associated with better self-care behaviors in contrast to the complications index, which has a negative effect on self-care. Therefore it was not aggregated in the complications index but kept separately. Table 17: Logistic regression: The impact of patient characteristics and complications on seeing a specialist I Dependent variable: Seeing a specialist in the last 12 month n =1073 Variables B Exp(B)/OR Wald Constant -499 .846 Age .008 1.008 1.133 Education .204 1.226 10712“ Black ethnicity -.064 .938 .367 Other ethnicity -.071 .932 .698 Gender .020 1.020 .019 Income in thousands -7.l E-7 1.000 .099 Years with diabetes .013 1.014 2.236 Complications index .281 1.324 12.158". Cox & Snell R2 .029‘” Nagelkerke R2 .042”. *p 5 0.05; " p 5 .05 *" p 5 .001 (all probabilities are two tailed) When all patient characteristics were entered into the regression, the Nagelkerke R2 was .02; when provider information giving was added it increased to .04 and the 96 model is significant at p 5 .001. The presence of complications has a significant effect although the odds ratio is only 1.3. Therefore those who have more complications are more likely to see specialists than those who do not yet have developed complications from diabetes. The data support the hypothesis 4.1: Those who are in the more advanced stages of diabetes are more likely to report using the services of a specialist. This concludes the testing of the relationships of self-care behaviors and complications from diabetes. The next section (hypothesis 5) will investigate how demographic factors influence provider information giving when we control for complications and patient self-care behaviors. 97 Demographic variables app provider behaviors In the previous sections we have focused on the diabetic person’s self-care behaviors, and the relationship to provider behavior, diabetes education and complications from diabetes. In this final analysis we will try to tease out how patient factors such as age and education affect physician information giving and self-care behaviors when we control for complications. Specifically we will look at age and its impact on provider information giving. Hypothesis 5.1: Those who are better educated are more likely to receive information about self-care from their providers. flvpothesis 5.3: Those who are older are less likely to receive information regarding self-care from their providers. The impact of age and general education level on provider information giving is the subject of interest. In the first block the demographic variables and diabetic complications were entered without education or age. In the second block education level and age were entered. 98 Table 18: The impact of demographics on provider information giving Dependent variable: Provider Information in .= 01070 8 Variables Unstandardized Standardized t , , y , - p . Coefficient . Coefficient Constant .861 11727” Black Ethnicity 2.166E-02 .045 1.470 Other Ethnicity 2.116E-02 .054 1.790 Gender -6.025E-03 -.010 -.307 Income in thousands 2.54OE-O7 .031 .845 Complications index 2.997E-02 .098 3.093” Years with diabetes 4.802E—O3 .135 4161‘" Education -2.786E-O3 -.012 -.340 Age -4.404E-O3 -.164 -4.561 R2 .041 F value 5.726." *p 5 0.05; “ p 5.005 *** p 5 .001 (all probabilities are two tailed) Education level was not significant at p = .734, the R2 did not increase by adding the education level and the F value decreased from 6.533 to 5.726. The data do not support this part of the hypothesis; education level does not appear to effect provider information giving in this sample when we control for other demographic factors, complications and years lived with diabetes. Hypothesis 5.1 is disconfirmed. When we control for education, ethnicity, gender, years lived with diabetes and complications, those who are older receive significantly less information with a beta of - .164 and p 5 .001. Adding age to the patient characteristics increased the R2 from .023 to .041, the model and the block are both significant at p 5.001. The data support hypothesis 5.3 those who are older receive less information. 99 This concludes the presentation of the results of analysis and in the next section we will discuss the results. 100 DISCUSSION OF THE FINDINGS In this final section the paper will summarize the findings, explore considerations and possible explanations for the findings. Summagy pf self-care findings Hypotheses addressing self-care: Hyppthesis 1.1: People with diabetes who recall their provider’s advice to engage in specific diabetes self-care activities (blood glucose testing, exercise, foot examination) are more likely to report practicing that self-care behavior. Hypothesis 1.2: Those who receive more self-care advice from their provider are more likely to engage in self-care behaviors. Hypothesis 2.1:When the person with diabetes recalls that the provider examined the home blood glucose log, the patient is more likely to monitor his/her home blood glucose levels. Hypothesis 2.2: When the person with diabetes recalls that the provider examined his/her feet, the diabetic is more likely to report examining his/her own feet at home. Hyppthesis 2.3: When the person with diabetes recalls that the provider modeled behaviors he/she is more likely to engage in self-care behaviors. 101 Hymthesis 3.1: People with diabetes who recall receiving information regarding diabetes education are more likely to take advantage of diabetes education. Hypothesis 3.2: Those who receive diabetes education are more likely to practice appropriate self-care behaviors. Hypothesis 5.2: Those who are better educated are more likely to practice appropriate self-care behaviors. In general hypotheses 1.1 and 1.2 for self-care and provider information giving are supported, diabetic patients who receive more advice regarding self-care are more likely to practice appropriate self-care behaviors. Hypotheses 2.1, 2.2, and 2.3 for provider modeling are also supported. When the provider models foot examinations and/or blood glucose evaluation, the person with diabetes is more likely to practice those self-care behaviors. Hypothesis 3.2 that those who receive diabetes education are more likely to practice self-care behaviors is also supported. Hypothesis 5.2 that those who are better educated practice better self-care behaviors is supported, the effect is strong and significant for office based self-care and exercise, but not for home blood glucose monitoring and foot care. This concludes the smnmary of the general results, next we will summarize the findings for self-care behaviors. Specific self-care behaviors The following paragraph will summarize the findings itemized by specific self- care behaviors and their hypothesized predictors. Home blood glucose monitoring as hypothesized is strongly and significantly influenced by provider information giving as 102 well as by individual patient education. Provider evaluation of the blood glucose log and modeling decision making based on the home blood glucose log is significantly and moderately effective; seeing a diabetes educator who also reviews the log and models decision making is significantly and strongly predictive of home blood glucose monitoring. Education level has no significant influence on home blood glucose monitoring. Foot examination is significantly increased by provider information giving as well as by individual diabetes education. The effect is stronger for provider information giving than for diabetes education. Provider foot examination modeling also has a strong and significant effect on the diabetic person’s foot monitoring. General education does not have a significant effect on foot monitoring. Provider information giving and individual diabetes education are significantly and strongly related to exercise. Education level has a significant but weak effect on increasing exercise time. The relationships between obtaining flu vaccination and retina examination and the provider information giving index are weak but significant. Education also has a significant impact on obtaining a retina examination and influenza vaccination. The provider information giving index is a significant and strong predictor for the office based self-care index, seeing a diabetes educator is not a significant predictor for office based self-care. Education level has a strong and significant impact on office based self-care behaviors. The home based self-care index measure is significantly and strongly predicted by diabetes education, provider information giving index but not by 103 education level. Diabetes education, the provider information giving index and education level all have a significant and strong effect on the overall self-care index measure. In summary hypothesis 1.1, 1.2, hypothesis 2.1, 2.2, hypothesis 3.2 and hypothesis 5.2 are supported by the data. Hypothesis 3.1 is also supported; people with diabetes who recall receiving information about diabetes self-help classes are more likely to attend. The effect is strong and significant. This concludes the summary for self-care behaviors and provider information giving; next the paper will summarize the findings addressing diabetes complications, demographics and provider information giving. 104 Summary o_f diabetes complications Ed demographic findings: Hymthesis 4: Those who are in the more advanced stages of diabetes are more likely to report using the services of a specialist. Hypothesis 4 is supported. Those who have more complications (aggregated in the complications index) are more likely to see a specialist for their diabetes. That effect is weak but significant. Hyppthesis 5.1: Those who are better educated are more likely to receive information on self-care from their providers. Hypothesis 5.3: Those who are older are less likely to receive advice from their provider. Hypothesis 5.1 is disconfirmed. Those who are better educated may receive less information from their provider rather than more, but the relationship is weak and not significant. Hypothesis 5.3 is supported, those who are older are less likely to receive information from their provider. That relationship is moderate and significant. In conclusion, all of the hypothesis statements are supported by the data, with the exception of hypothesis 5.1, those who are better educated pp po_t receive more information from their providers when we control for other demographic factors, complications, and years lived with diabetes. This concludes the summary of the findings and next the paper will discuss data and methods considerations. 105 Data 3% methods considerations The following section will consider data and measurement issues and their possible effect on the results. Some data issues are rooted in the fact that the survey was developed and the data collected before I became involved with this research project. Therefore, some questions were not specifically worded to match the hypothesis statements. While the survey asked about some recommendations that the physician may have made, it lacked specific questions asking if the provider had recommended office based self-care behaviors, such as retina screening and obtaining influenza vaccination. Therefore it is not surprising that the more general questions on physician behavior were not as strong a predictor of these specific behaviors. The effect of physician behavior on home based self-care behaviors is greater because all of the questions regarding provider information giving were specific and addressed home based self-care (blood glucose monitoring, foot inspections and exercise). While physician behavior was a good predictor for these behaviors, we now discuss why age was a strong predictor as well for these behaviors. Influenza vaccination recommendations and retina examination standards are not limited to people who have diabetes: There is a general recommendation to obtain the influenza vaccination for all people who are age 55 and older and for people of any age who have heart disease or lung disease or a compromised immune system. Therefore many community groups, including churches and public service announcements encourage people to obtain the influenza vaccinations as soon as they become available. The situation is similar for 106 retina examinations. As people age they become more likely to experience deterioration of the retina and should have their retina examined. Likewise, those who have hypertension (high blood pressure) are likely to develop microvascular diseases, including retina detachment. Like diabetes, hypertension prevalence increases with age. Thus the office based self-care behaviors are not specific to diabetes. That may effect the importance of provider advice or the lack of provider advice secondary to the messages from churches and community groups. That would be one possible explanation why age had such a significant and strong effect on retina screening and eye examinations. The age effect on influenza immunization and retina examination is large enough to impact the aggregate measurement indexes for self-care. As one looks at the unstandardized coefficients in the OLS regression tables, they appear to be extremely small, yet they are significant. The reason for their small values can be found in the summary table of the continuous variables. All of the index measures are very small because they represent the mean of complications or self-care behaviors. Complications and self-care behaviors, with the exception of exercise and retina examination, were dichotomous measures. Those had a range from “0” to “1” and thus the mean of home based and office based self-care behavior is close to one. The mean, rather than the sum was used to create the index measures to avoid decreasing the sample size due to the many missing measures. Therefore it is more helpful to look at the standardized regression coefficients. Now that we have considered the measurement issues we will examine and discuss some of the factors for which we have controlled for in the analysis. 107 Background Variables The background variables include use of a specialist, diabetes complications index, and demographic variables. Utilization of a specialist was particularly interesting because 71.1 % of the respondents stated that they had seen a specialist during the last twelve months. This is a very high percentage compared to only 16.4% of a diabetic sample in California that reported having seen a diabetes specialist (Simon et a1, 1999). This high utilization of specialists could be important because several studies have demonstrated that those who see a diabetes specialist receive better diabetes care (Simon et a1 1999; Zgibor et a1, 2002). One of the possible explanations for the high rate of specialist use may be found in M-CARE’s administrative structure and its affiliation with the University of Michigan Medical School and its endocrinology department. M- CARE’s Associate Medical Director is also the head of the endocrinology department and the principal investigator for the TRIAD study from which the data for this analysis came from. It is possible that people with diabetes that had seen the specialist felt obligated or pressured to participate in the study, thus creating a selection bias. That is one possible explanation for the high utilization of specialists. There is another possible explanation that is rooted in the wording of the question. The question did not specify the type of specialist seen and whether that specialist was a diabetologist, it just asked: “. . .. did you see a specialist for your diabetes”. Depending on how the subjects interpreted the question, the specialist could have been a podiatrist for a foot problem or an ophthalmologist for the yearly retina examination rather than a diabetologists. Yet podiatrists are not likely to address diabetes issues, other than the 108 feet, and ophthalmologists are not likely to teach about diabetes, but rather focus on their expertise, the eyes. Another possible explanation can be found in the link between M-CARE and the University Health System. The Health System employs the specialists as well as half of all primary care physicians who care for M-CARE’s members. In other managed care organizations, the specialists and primary care physicians are seldom employed by the managed care organization. That makes a referral to the specialist more costly for both the primary care physician and the managed care organization; some of the managed care organizations have disincentives for primary care physicians to refer to specialists. Thus it is possible that M-CARE primary care physicians may refer more freely to specialists because the specialists are part of the same system and there is no financial penalty for the refenal. That explanation is supported by the fact that seeing a specialist was dependent on seeing the primary physician for routine maintenance care. Those who saw their primary care provider for routine care were more likely to be referred to a specialist. Referral to a specialist was also dependent on diabetes complications. Those who had more complications were more likely to see a specialist. However, subjects who had emergency department use in the last twelve months (67.6%) were less likely to see a specialist and the emergency care utilization in this sample was unusually high. One would assume that a person who needs emergency medical treatment would consult a specialist, either in the emergency room or as follow-up. In this sample this does not appear to be the case. 109 One possible explanation for the high emergency room utilization may be found in M-CARE’s fee structure that existed at the time the information was collected. Members had a $15.00 copay for a scheduled office visit, and office appointments can be difficult to get. Usually appointments are scheduled according to the physician’s availability, rather than the patient’s needs. Emergency visits on the other hand are not scheduled and can be planned on by the member and the copay was only $25.00. Thus, the member could use emergency care at a convenient time for only an increase of $10.00 compared to a visit during regular office hours and a time that may have been inconvenient. Therefore emergency department use may not be reflective of the subject’s health status; rather it may be the result of the fee structure and availability of office appointments and the patient’s motivation to see his/her own physician. Thus the high utilization patterns of specialists and emergency centers could be the outcome of the unique medical care that is provided in a medical school managed care setting; the use of specialists and emergency centers may be more acceptable than in other managed care organizations, because all are providers for the same organization. Related to utilization patterns are diabetes complications. The next section will explore the diabetes complications in this sample and the relationship to self-care. Diabetes complications As mentioned before, the complications from diabetes increase over time. The microvascular changes are the first to occur but there are ofien no symptoms until the advanced stages, when heart attack, stroke, retina damage, blindness or kidney disease occur. Macrovascular changes occur over decades before “the major event” occurs. 110 Thus length of time since diabetes was diagnosed should be a strong predictor advanced disease. However, the number of years lived with diabetes has a greater impact on self- care behaviors compared to the impact of complications. The influence of years lived with diabetes on self-care is consistently stronger than the actual complications. The reason for this may be as follows, the longer a person lives with diabetes, the more time there is to learn to live with diabetes and to adjust the life-style accordingly. Vice versa, it could be that those who practice good self-care stay healthy and therefore live longer with diabetes. Consistent with that theory, when the complications were analyzed, we found that amputation, angioplasty, stroke or heart attack all had negative effects on self-care. This is surprising because according to the Health Belief Model, complications should increase the perceived threat from complications (another heart attack or another amputation). The lack of increase in self-care behaviors after complications may be explained by limited behavioral capacity', which is not considered in the Health Belief Model. Many people who have had strokes are afraid of falling or experience weakness or other physical limitations and therefore have a difficult time exercising. Others who have heart disease or neuropathy may experience pain when they exercise. Similarly people who have developed retinopathy may have difficulty seeing and reading their blood glucose levels, examining their feet or driving to the provider’s office. Thus, it may be more difficult for the person with diabetes who has developed ‘ Behavioral capacity is the ability to perform a behavior. Behavior can be limited by physical or psychosocial factors. 111 complications to practice recommended self-care. This causes a sad predicament for the person with diabetes. The diabetic person has to practice self-care behaviors to prevent complications. Once complications become symptomatic and the person with diabetes becomes aware of the threat, he/she is limited in the ability to practice the required self- care behaviors. Another possible explanation for lack of increase of self-care behaviors once complications have developed, may be the presence of depression. Once complications set in, the quality of life decreases and depression may become more prevalent. Those who are depressed are less likely to exercise and those who exercise are less likely to become depressed because exercise produces brain chemicals that enhance the mood. There are no depression indicators in this data set and there was no way to control for it. It is however, known that people with depression have poorer health outcomes for almost any chronic condition, such as heart failure, asthma, diabetes or even back pain. It would be worthwhile in the future, to study the effect of depression on self-care because depression can be treated. If depression is the underlying cause of lack of self-care, the depression could be treated and self-care would improve. Another possible explanation is that those who cannot motivate themselves to practice good self-care, develop complications. The lack of self-care will result in higher blood glucose levels and those, in turn, lead to a faster occurrence of complications, such as stroke, heart attack and amputations. In that case, the lack of self-care would precede the complications and the complications may just further de-motivate the person. Because this is a cross sectional study, the data do not permit us to differentiate. 112 Demographics At this point we have looked at the summary of findings, utilization (emergency care use and seeing a specialist) and factors associated with diabetes complications. Demographic factors are the last remaining group of background variables and will be considered and discussed in he next section. As mentioned in the “results” section, it was disappointing to see the sample to be mostly “white”. “White” populations have lower diabetes prevalence and lower complication rates than other groups once diabetes has developed. Yet 76.1% of the sample classified themselves as “white” even though University Medical Centers that serve minority populations were oversampled. M-CARE does not collect ethnic information on its membership and therefore it is difficult to say whether the general membership has an appropriate ethnic composition. Because of the lack of minority etlmicities in this sample the data do not show the ethnic differences that have been found in other studies. Ethnicity was not significant in any of the analyses, presumably because of lack of subjects in the non-white ethnicities. Education was one of the more interesting demographic variables. It was a significant factor in most of the analyses, with the exception of home blood glucose and foot monitoring. One possible explanation is that subjects with more education may be younger and exercise more, although we controlled for age, it could be that they are able to control their blood glucose levels better and therefore worry less about their glucose levels and neuropathy; those were the two behaviors that were not increased by education level. When education was studied as dependent variable, the complications index was significant and the slope negative. Thus, those who are better educated appear to have fewer complications. It was surprising to see that those who have more formal education 113 received less information from their providers. Since we live in an age of the Internet, providers may assume that well educated patients do not need information from their providers, because they have the tools to find any information they need. That explanation is supported by the data. When education was set as dependent variable, getting information through the Internet had a strong and significant association to education level. Thus the providers may not need to give the information, because the person with diabetes may ask the questions that indicate that he/she has the needed information. That would also explains why those who enjoyed more formal education make better use of the medical care system, they not only know what is needed but have the communication skills to access available services. Age was another powerful demographic variable that had a great effect on the dependent variables. Those who were older had significantly less education, had less income and had more complications. Yet, those who are older are given less information. It is difficult to discern whether this may be caused by the aged person's lack of short- terrn memory or by the providers’ lack of information giving. Unfortunately, the data do not tell whether those who are older receive less information or whether their ability to recall the information is decreased. While there may be a recall problem, the provider should be aware if bis/her patient has decreased short-term memory and should reinforce important information with written materials in order to treat effectively. There are simple instruments to assess mental acuity that can assist the provider in identifying memory problems. It is the provider’s responsibility to provide appropriate treatment including age appropriate information giving. If the patient 114 cannot remember what he/she was told to do, the patient cannot act upon the information and the self-care behavior cannot be practiced. Another possible explanation is that providers found it more difficult to communicate with the older population, because they were older and had less education. There is evidence that few physicians like working with the aged populations. There is a shortage of geriatric specialists in the US. despite the fact that the population is aging. One of the possible reasons may be that the treatment of the older population tends to be less technical. People over age 65 are less likely to receive transplants or other experimental treatments and may not wish to receive drastic life prolonging interventions. Thus the provider will not be able to practice his/her high technical skills, which are considered prestigious and therefore the old frail patient may not be very desirable from a physician’s point of view. The other demographic variables did not have a strong or significant impact on the dependent variables, thus this concludes the discussion of the demographic factors and we will turn our attention to the differences in the self-care behaviors. 115 The differences in self-care behaviors As the data indicate, the self-care behaviors that are considered in this study are rather different from each other in cost to the patient and in complexity of the tasks; they should not be aggregated without considering the difference between the behaviors. The office-based behaviors such as obtaining an eye examination and the influenza vaccination are needed only once a year and do not require special skills and are not painful for the diabetic person. The main requirement is the realization that the treatment is needed and beneficial and the ability to access care. As a consequence, education is a strong and significant factor for office based behaviors in this sample. Office based self- care behaviors are not specific to the diabetic population, as mentioned earlier, age and other conditions require the same treatment, therefore age was a significant predictor next to provider information giving for office based self-care. The home based self-care behaviors measured in this study include exercise, blood glucose monitoring, and foot examination; they should be practiced every day. They also differ in complexity and “cost” to the patient. It is important to consider the cost and the complexity of the behavior, generally the simpler and the more convenient the behavior the greater is the likelihood of adherence to the behavior. Exercise is one of the more difficult behaviors, particularly for women (Waldron 1988). Exercise is not specific to diabetes, it is also indicated for better mental functioning, preventing artery disease, some of the cancers and maintaining a healthy weight. It was surprising to see that the mode for exercise is “zero minutes per day”, 35.3% of this sample do not exercise at all and only 37.2% exercise 20 minutes or more per day. Considering that 116 exercise is the foundation of diabetes treatment and the only treatment that can decrease insulin resistance, more interventions are needed to support exercise behaviors in people with diabetes. 56.7% of the population stated that they received “advice to exercise”. However, the questions only talks about “advice” it does not give information on how practical and how detailed that advice was. Usually complex behaviors need tailored support to help the individual to achieve and maintain the complex behavior. Actually it is encouraging that even the simple advice increases the desirable complex behavior. The other 43.3% cannot even remember that they were told that exercise is part of diabetes treatment. That is not medical practice according to evidence based clinical practice standards. Home blood glucose monitoring is also one of the “painful” and “complex” diabetes self-care behaviors. It takes some dexterity to handle the strips and the monitor and to obtain sufficient blood on the strip for accurate measurement. It requires cognitive skills to evaluate the results and treat accordingly. It demands much motivation, because it is not comfortable to penetrate the skin repeatedly. Although it is one of the more costly behaviors, 80.9% of the sample stated that they monitor their glucose at home. That is a good ratio for this behavior, because “most people with diabetes” but not everyone needs to monitor their blood glucose at home. Foot monitoring is a simple, low cost behavior. It does not hurt and it does not require much time or skill to look at the sole of the foot to ascertain that there is no injury. The question asked whether someone in the house checks the feet of a person with diabetes, therefore a morbidly obese person who has problems seeing the feet may ask help from a family member. Yet only 32.7% of the sample stated that they check 117 their feet. This is most surprising. The only explanation that is plausible is that the people with diabetes are not aware of the risk for amputation secondary to infection and neuropathy. According to standards, everyone should inspect their feet because the cost is low and the benefit is the potential saving of the toe or even foot. This lack of monitoring is reflected in Michigan’s 1,564 amputations for diabetes in the year 2001 at the cost of $29.5 million. All of these are potentially preventable with proper foot care (Michigan Department of Community Health, 2003). It would be worth researching why foot monitoring is not more commonly practiced. Considering the differences in costs and complexity of the self-care behaviors, the next section of the paper will discuss the relationship of provider information giving and provider modeling on those self-care behaviors. 118 Effect o_f provider information giving The following section will discuss the relationship between provider information giving and self-care behaviors. The data leave little doubt; provider information giving is an important predictor for diabetes self-care. This is true for home blood glucose monitoring, examining the feet and exercising - those behaviors had specific measures in the survey. For home based self-care behaviors provider information giving was not only significant but the effect was strong. The office based behaviors (flu vaccination and retina examination) did not have a specific information giving question in the survey nevertheless, provider information giving index was a significant predictor for office based self care behaviors. The provider information giving index is the single most important factor that increases influenza vaccination and retina examination. The effect would probably have been greater if there would have been a question addressing office based self-care information giving. The effect on the home based behaviors was large enough to create a strong effect in the overall self-care index score. However, while provider information giving influences self-care behaviors, better self-care behaviors appear to lead to more provider information giving. There seems to be reinforcement from provider to patient and when the patient practices appropriate self-care the provider offers more information. This may point to the providers’ discomfort or unease and lack of training in working with patients to change their life-styles. Thus, if the patient is willing to practice appropriate self-care behaviors, then the provider may feel comfortable giving more information regarding life-style and effect on the disease. It is also possible that the underlying causal factor is the diabetic person’s motivation, i.e. the patient who is motivated practices the proper self-care and may also request more 119 information. The question is whether the more motivated person with diabetes requests diabetes information and therefore recalls information given by the provider and then is able to practice more appropriate self-care, or whether the patient practices good self-care and then the provider offers more information. The question can only be settled by a longitudinal study that measures attitudes towards health and motivation at the beginning of the study and then either randomly assigns subjects to diabetes education/provider information giving group or controls statistically for motivation. Unfortunately this was a cross sectional survey and there was no question in the survey that could shed light on the subject’s motivation and whether or not the diabetic person requested information. The data on diabetes educators was surprising. It appears that diabetes educators are more effective with complex behaviors, such as blood glucose monitoring as compared to inspecting the feet, a simple behavior. Particularly in the “Modeling table” (Table 5) the diabetes educator appears to have the greater impact. Intuitively one would expect that the individual educator focuses on the diabetic patient’s needs and spends on the average one half to one hour with the diabetic person, trying to tailor instructions and assist with behavior changes. That should have greater impact than mere information giving. Providers and their office based staff do not have much time available; in most cases the actual encounter with the physician lasts less than ten minutes and the communication part may take only two to five minutes during any routine visit. One possible explanation may be found in the relationship between the provider and the patient. The provider and his/her staff usually have established rapport with the patient, while the diabetes educator has to establish that rapport and trust in order to be effective. Much of the time the diabetes educator spends with the patient is used to gather the 120 medical history and identifying the learning style of the diabetic person. Therefore the actual teaching time may be less than anticipated. The office staff on the other hand has all the information available from the medical record. Therefore tailoring and personalizing to meet the medical need is less difficult ( i.e. “For you Mr. Jones, it is particularly important that you exercise. Exercise can increase your HDL and your HDL is too low”). This type of tailoring is thought to be most effective because it is relevant to the patient. Another possible explanation is that the patient associates the provider information giving and accommodates other physical conditions from the office staff as “physician prescription”. The physician prescription is personal and carries more weight than general information that may be provided by the diabetes educator. In addition, considering that the provider directs the staff, there is little chance that there is conflict in the message sent to the person with diabetes, while such conflict can happen with the diabetes educator, particularly if the provider does not practice according to evidence based treatment standards for diabetes. Again, this is an issue that would benefit from further study, which behaviors can be modified by diabetes educators and which behaviors are better addressed by the provider. At this point we have looked at some of the findings and tried to explore them in light of measurement issues and what is known about diabetes self-care behaviors. Next we will try to examine the implications and limitations of the findings. 121 Implications The implications for this study consider the importance of provider information giving and opportunities to strengthen provider information giving. While information giving by the provider and his/her staff is one of the most important predictors for self- care behaviors, most physicians are not trained in behavior modification and nurses receive limited training in behavior modification and education unless they are specialized. Furthermore, physicians seldom are reimbursed for time-spent teaching or counseling. Thus it would help to change the training of physicians as well as the reimbursement regulations. The American Medical Association is currently considering providing counseling education and experience during the academic and clinical training. That would give new physicians the skill and confidence to provide effective counseling and help with life-style changes. There are also changes in the expectations of the regulating bodies. For example, the American Hospital Association is monitoring the quality of patient education in hospitals. Coordinated education tailored to the patients’ specific abilities is required for accreditation. However, patients with diabetes who are hospitalized may be too ill and in too much pain to be ready to learn; modeling is not easily accomplished in the hospital. In managed care there are other problems. Health insurers evaluate or rank each provider by information that can be obtained from claims data. Thus they measure hemoglobin Arc testing but not necessarily whether the blood glucose has been controlled. Counseling and teaching are not evaluated because the information cannot be obtained from claims data, - providers do not bill for it because they do not get reimbursed for it. Obtaining teaching and counseling information requires costly medical record review. Thus current measures lack sophistication, 122 specificity and often accuracy. The evaluation process becomes useless for monitoring of counseling and does not motivate providers who need feedback on all aspects of their patient care. Physician time is costly and employed physicians are expected to see as many as forty patients a day in a hospital or managed care setting. It might be a better solution to improve the training of the provider’s staff, such as medical assistants or nurses. The barrier is that at this time hospital based nurses are pressed for time as well and due to lack of time do not provide intensive patient education. Another solution would be to create a communication vehicle that makes it easy for the provider to communicate with the diabetes educator and direct the educator to address the patient’s most important issues. Thus the message sent by the educator could be a direct reflection of the provider’s concerns about health behaviors and could be targeted and tailored. However, that requires that the physician refers the patient to a diabetes educator and that the patient actually sees the educator to be helped. In this sample there were no monetary problems for the diabetic person, but outside a managed care organization, most insurances do not reimburse for diabetes education and Medicare reimburses only part of it. Thus while diabetes educators can be effective, the reimbursement system does not support them well. In Michigan the diabetes education programs lose money. Thus there appears to be growing awareness of the problem, but the solution is not easy to find. After considering the implications of the findings and possible solution, we need to consider the limitations of the findings. 123 Limitations The following section will consider the limitations of the findings due to sample selection, and medical care provision that is unique to a managed care organization in a university setting. The sample came from a managed care organization in a university setting. Thus, as discussed in the data section of the discussion, medical care and utilization may be unique to the setting as well as the population in this study. > The study was limited to people who are proficient in the English language. Language barriers make it more difficult to provide information and those who do not speak English receive less information (Simon et al. 1999). Thus any findings are limited to English speaking populations that can read and comprehend. Lack of English skills is more common in ethnic minority populations who also are at the greatest risk for diabetes complications. The data do not permit us to draw any conclusions on how provider communication affects ethnic minorities and their diabetes self- care . > The questionnaire did not contain a reliable question to evaluate adherence to the medical nutrition plan. Since nutrition is a key-stone in diabetes self-care, the lack of measure limits the data. > This study has shown that the provider’s advice makes a substantial difference in patients’ behaviors. However the population is this study has 124 generous insurance benefits with small copays on diabetes supplies or office visits. Therefore the provider’s advice to monitor glucose or to obtain flu vaccination or retina examination imposes minimal consumer costs. When there is no insurance and great expense, the person with diabetes may not be willing or able to pay the costs associated with self- care. Advice and desire to practice appropriate behaviors does not remove access barriers that exist in many other medical care settings. > The subjects in this sample receive generous benefits and have no copays for any diabetes education. They have access to diabetes case managers. This is not true for all populations or for people who do not have health care insurance. A recent unpublished study demonstrated that people with diabetes are less likely to practice preventive behaviors when the cost is greater. Herman et al (2003) found in an unpublished study that copays deter from participation in diabetes education or blood glucose monitoring programs. Therefore, the study may not apply to the general population who has little or no coverage. Thus, while the findings are important, there are difficulties in the health care system that need to be resolved before provider/patient communications about needed self-care can improve on an industry wide scale. 125 Conclusions The conclusions for this paper will demonstrate that the findings of this study are important; when researchers focus on patient adherence or lack of compliance, it is the patient and the patient’s personal environment that are usually studied. That implies that the patient or his/her personal environment bear the responsibility and need to be changed to obtain adherence. Yet, the data suggest that much of the adherence depends on provider counseling and information giving, possibly financial barriers and access to medical care. Provider counseling is most powerful, the ten minutes spent in the provider’s office impact the next six months of life-style even when we control for age, education, income, ethnicity, and diabetes complications. For the amount of resources spent that is an important impact, particularly since the questions did not require the patient to remember specifics, only whether they were given information. The data leave little doubt that part of the responsibility for the diabetic person’s self-care lays with the providers and their information giving- their behaviors and adherence to evidence based clinical practice guidelines. The other issue is the lack of reimbursement by Medicare and traditional medical insurers for diabetes education. Diabetes is a very complex disease and most of the cost from complications could be avoided with better self-care behaviors. We know that diabetes education increases desirable self-care behaviors, which in turn lower the glucose levels. We know that good blood glucose control decreases and delays complications. Yet we still blame the patient for lack of adherence rather than looking at the medical structure and what could be changed to assist the person who struggles with 126 diabetes. 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