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thesis entitled

FEMALE BREAST CANCER PATIENTS' PERCEPTIONS OF PAIN
AND PHYSICAL WELL-BEING FOLLOWING SURGERY
FROM BREAST CANCER

presented by

Evelyn Hammond Bochenek

has been accepted towards fulfillment
of the requirements for

Master of Science degree in Nursing

 

 

 

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M!
K———-- h , , e

FEMALE BREAST CANCER PATIENTS' PERCEPTIONS OF PAIN
AND PHYSICAL WELL-BEING FOLLOWING SURGERY
FROM BREAST CANCER

BY

Evelyn Hammond Bochenek

A THESIS
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of

MASTER OF SCIENCE IN NURSING

College of Nursing

1996

ABSTRACT
FEMALE BREAST CANCER PATIENTS' PERCEPTIONS OF PAIN

AND PHYSICAL WELL-BEING FOLLOWING SURGERY
FOR BREAST CANCER

BY

Evelyn Hammond Bochenek

A non-experimental design utilizing data from a larger,
longitudinal community cancer study was analyzed to describe
older women's perceptions of pain and physical well-being
within eight weeks of surgery for breast cancer. The sample
population were women diagnosed with incident breast cancer
(n=117). Perceptions of pain and physical well-being were
measured using the Symptom Experience Index (Given, Given &
Stommel, 1994) and the Medical Outcomes Study--F836
(Stewart, Ware & Brook, 1981). The study was guided through
use of the Impact of Pain on the Dimensions of Quality of
Life conceptual model developed by Ferrell, Taylor, Grant,
Fowler, & Corbisiero (1993).

Data were analyzed using basic descriptive statistics
and bivariate descriptive statistics. The results of this
study show that patients perceive a multitude of symptoms
and physical limitations within the eight weeks following
breast cancer surgery including a substantial amount of
fatigue. Implications include the need to better manage
symptoms and maximize functional abilities during the post-

operative period.

ACKNOWLEDGMENTS

I am indebted to my thesis committee for helping me
move this project toward completion: Dr. Barbara Given,
Chair, for her positive attitude and energizing spirit
regarding research; Dr. Gwen Wyatt for assisting with the
conceptual components; and Dr. Celia Wills for her amazing
ability to clarify research methods into understandable
terms.

I would especially like to thank my daughter, Beth, and
my parents, Barbara and Wally Hammond, for providing the
support and understanding I needed to complete this program.

It has been a lifetime dream.

iii

TABLE OF CONTENTS

LIST OF FIGURES . . . . . . .

LIST OF TABLES . . . . . . . . .

I.

II.

III.

IV.

INTRODUCTION . . . . . . . .
Problem . . . . . . . . . .
Purpose . . . . . . . . . .

Statement of Research Question
Conceptual Definitions of Study Variables

CONCEPTUAL FRAMEWORK . . .

Pain Impact on the Dimensions of Quality

Model . . . . .
Domain of Physical Well- -Being

Domain of Psychological Well- -Being

Domain of Social Concerns .

Domain of Spiritual Well-Being .
Adaptation of the Pain Impact on the

Quality of Life Model . . .

REVIEW OF LITERATURE . . .
Pain and Quality of Life
Symptoms . . . . . .
Functional Ability . .
Summary . . . . . .

METHODS . . . . . . . . . .
Research Design . . . . . .
Sample Procedures . . . .

of Life

Dimensions of

Rationale for Point of Data Collection .

Data Collection Procedures .

Data Collection During Hospitalization .

Training of Data Collectors

Operational Definition of Variables

Protection of Human Subjects
Instrumentation . . . . . .

iv

PAGE

vii

\J bkul-‘H

Rooms)

O
P‘H

. 13
. 13

18

19
19
20
20
21
21
22
22
23
25

V. RESULTS . . . . . . . . . . . . . . . .
Research Question #1 . . . . . . . . . . . . .
Research Question #2 . . . . . . . . . .
Age by Symptom Frequency and Functional Ability
Patient Education by Symptom Frequency and

Functional Ability . . . . . . . . . . . . .
Living Arrangement by Symptom Frequency and

Functional Ability . . . . . . . . . . . . .
Current Work Situation by Symptom Frequency

and Functional Ability . . . . . . . . . . .

VI. SUMMARY AND IMPLICATIONS . . . . . . . . .

Limitations of the Study . . . . . . . . .
Implications for Advanced Nursing Practice

Summary . . . . . . . . . . . . . . . . . .
REFERENCES . . . . . . . . . . . . . . . . . . .
APPENDICES

A Demographics Instrument . . . . . . . . . .

B Medical Outcomes Study--FS36 . . . . . . . .

C Symptom Experience Index . . . . . . . . . .

D UCRIHS Approval Letter . . . . . . . . . .

E UCRIHS Approval Letter for Longitudinal Stu udy

27
27
33
34

35

36

36

37
37
39
43

44

S3
60
62
64
65

LIST OF FIGURES

FIGURE PAGE

1 Pain Impact on the Dimensions of Quality of
Life "Odel O O O O O O O O O O O O O O I I O O O O O 10

2 Adaptation of the Pain/Impact on the Dimensions
of Quality of Life Model . . . . . . . . . . . . . . 12

vi

LIST OF TABLES

TABLE
1 Sociodemographic Characteristics of Sample

2 Symptom Experience of Sample . . . . . .

3 Summary of Responses to Functional Ability Items

Within Eight Weeks of Surgery . . . .

4 Pairwise Correlations Among the Presence of Pain and

the Other Symptoms . . . . . . . . . .

5 Pairwise Correlations Among the Presence of Pain and

the Presence of Physical Limitations .

PAGE

. 29

INTRODUCTION
Problem

Breast cancer is the most prevalent cancer in women
today (Shapiro & Clark, 1995). The American Cancer Society
(1996) estimates that during 1996, 182,000 women in the
United States will be newly diagnosed with breast cancer;
this is a two percent increase over the past decade. In
Michigan, the incidence of breast cancer in females between
1985 and 1990 was 33,414 (Swanson, 1993). Breast cancer
accounts for 31% of the cancer diagnoses in Michigan
according to the Cancer Statistics reported by the Office of
State Registry, Michigan Department of Public Health (MDPH)
(1992). The incident cases of breast cancer in Michigan in
1990 occurring among those 65 years and older, was 49%
(MDPH, 1992).

The diagnosis and treatment of breast cancer may
include surgery and resulting changes in the presence of
symptoms and physical functioning. Some third party payers
are adopting guidelines to reduce the length of stay for
breast cancer surgery procedures for Diagnosis-Related
Groupings (DRG) 257-260 (Blue Cross Blue Shield of Michigan
(BCBSM), 1995). Mandates require discharge from the
hospital in 48 hours or less of the operative procedure for

breast cancer surgical procedures, for the purpose of

1

reducing costs (Doyle, 1995). Only six years ago (1990),
the average length of stay for breast cancer surgery
procedures was 3.7 days; the average length of stay for
these same procedures during 1993 was 2.2 days (Michigan
Hospital Association, 1995).

The diagnosis and treatment of breast cancer may
include surgery, resulting in changes in the presence of
symptoms and physical limitations. Older women are more
likely to have surgery as the only modality of therapy for
breast cancer but may also have more extensive disease at
presentation than younger patients (Cohen, 1986). There are
the increased morbidities that accompany age and those that
accompany extensive breast cancer disease. Both may affect
post-operative recovery, symptoms and functional ability.

The effects of pain on the patient and others has been
well-documented in recent literature (Paice, Mahon & Faut-
Callahan, 1991; McCaffery, 1991; Portenoy, 1989; Frank-
Stromberg & Wright, 1984; Wyatt, Kurtz, & Liken, 1993).
Pain is identified with decreased quality of life and
decreased functioning; it affects daily activities,
relationships, sleep and outlook on life (Timmerman &
Sternbach, 1992; Spross, 1985). As the patient's length of
stay in the hospital decreases, the need to assess the
patient's perception of pain and physical well-being becomes
even more important to primary care practitioners who
maintain continuity with patients and coordinate care. The

issue of early discharge from the hospital raises questions

3
regarding the efficacy of pain management, other symptom
management, i.e. nausea, constipation, fatigue, and the
ability to physically function with such activities as
walking, climbing stairs, and lifting.

The focus of this study is to describe patients
perceptions of pain and physical well-being within eight
weeks after surgical procedures for breast cancer. Physical
well-being is defined in terms of functional ability, and
symptoms. The issue of early discharge from the hospital,
where health care professionals are available for physical
and psychological support, raises questions regarding the
efficacy of pain management and the perception of quality of
life once discharged home. The eight week period after
hospital discharge was chosen as a study point because it
appears to reflect a milestone in the clinical and treatment
course.

Burgess

The purpose of this study is to describe older women's
perceptions of pain and physical well-being following
surgical procedures for breast cancer within eight weeks of
hospital discharge. By identifying the incidence of pain,
symptoms and functional ability, areas can be identified to
improve the patient's perception of physical well-being, by
developing plans and expected outcomes for the management of
symptomatology in the home setting and the improvement of
outcomes and quality of life for clients may decrease costs

for the health care system. Clinical nurse specialists]

4
nurse practitioners in primary care are in the forefront to
provide efficient, cost-effective and appropriate health
care services at the community level. The advanced practice
nurse has the unique opportunity to play an important role
in reducing readmissions to hospitals for symptom management
and to improve the quality of care by appropriately
assessing and managing symptoms in the primary care setting.
To coordinate these efforts successfully, the clinical nurse
specialist will need to utilize the available data and
assimilate the roles of assessor, educator, collaborator,
advocate, clinician, and case manager.
WW:

The specific research question is “What is the
relationship between perceived pain and physical well-being
as a component of quality of life within the first eight
weeks of hospital discharge among women who have had breast
cancer surgery?” .A secondary question which will be
examined is.‘Is there a difference in the relationship
between pain and physical well-being by sociodemographic
factors?"

: l J E E' 'l' E 5! i M . l]

The following variables were utilized in the study:
Quality of Life. Multi-dimensional state of being
related to performance, personal attitudes and/or affective

states, well-being and support including the domains of

physical well-being, psychological well-being, spiritual

5
well-being and social concerns (Ferrell, Wisdom & Wenzl,
1989).

2hyeieel_flell;fieing. Physical well-being for the study
consists of functional ability, and symptoms.

Pain. Pain is a common response to illness which
requires nursing diagnosis and intervention; it is
subjectively whatever and whenever the client describes
(Ferrell, 1991; McCaffery & Beebe, 1989). A distinction is
made among surgical pain (acute), chronic pain and cancer
pain. Acute pain is defined as a protective mechanism with
sudden onset; it is accompanied by a hope of recovery
(McCance & Huether, 1990). Chronic benign pain is defined
as that pain which extends beyond the usual course of a
disease or injury (Bonica, 1992). Cancer pain or malignant
pain is that pain associated with an advanced malignancy and
experienced by two-thirds of cancer patients (Patt, 1992).
Although breast cancer surgical procedures performed at
Stage III or IV may include a component of cancer or
malignant pain, for the purposes of the study, the type of
pain referenced will be acute surgical pain.

Weakness. Weakness is a feeling of being weak, weary or
exhausted or not able to function (Padilla, Ferrell, Grant &
Rhiner, 1990). It may also include an increased need for
sleep decreased ability to concentrate and an element of
depression (Schroeder & Hill, 1993).

Fatigue. Fatigue is a symptom comprised of subjective

weariness, exhaustion and lack of energy (Aistars, 1987).

6

Irenn1e_§leeping. Trouble sleeping is a persistent
difficulty in falling asleep or staying asleep to the point
that daytime functioning is compromised (Uphold & Graham,
1994).

Nausea. Nausea is an unpleasant feeling of impending
vomiting (Graham & Uphold, 1994).

Eeez_Anpetite. Poor appetite is the lack of, or
interference of, the instinctive desire to eat and keep up
organic life (Whitney, Hamilton & Rolfes, 1990).

genetipetien. Constipation is a diminished frequency of
defecation, incomplete evacuation or stools that are too
hard or too small (Uphold & Graham, 1994).

£une;ienel_Ability. Nine physical functions related to
activities of daily living including the ability to perform
moderated activities (such moving a table, bowling or
playing golf); vigorous activities (lifting heavy objects or
participating in strenuous sports); lifting or carrying
groceries; climbing several flights of stairs versus one
flight of stairs; bending, kneeling or stooping; walking
more than a mile; and walking several blocks versus one
block.

Breast_Cancer_Snrgsz¥_Eresednres- All types 0f breast
cancer procedures will be included. In the larger
longitudinal study, patients were identified by primary site
(breast) and whether breast surgery was employed as a

treatment modality. All types of breast cancer surgery

7

will be included as the data base for the larger,
longitudinal study does not allow a distinction among the
various types of breast cancer procedures at this time.

From a review of the literature, surgical pain and
cancer pain for women with breast cancer are not well-
managed (Liebeskind & Melzack, 1988; Bonica, 1990; Ferrell,
Taylor, Fowler, Grant & Corbisiero, 1993; Paice, Mahon &
Pant-Callahan, 1991). The National Institutes of Health
Consensus Conference on pain management suggested that
patients in the United States are under-treated for pain
management (Ferrell, 1991). The United States Public Health
Service through the Agency for Health Care Policy and
Research (1992) has developed acute pain management
guidelines for health care professionals in response to
documented under-treatment of pain. The nurse practitioner
in primary care needs to be concerned regarding
postoperative pain because pain and physical well-being are
concerns for the patients in primary care. Practitioners
may be providing care for conditions which may be
exacerbated by pain, symptoms or functional ability.

CONCEPTUAL FRAMEWORK

E i I I I] E' i E : 1.! E I'E H i 1

The model, Pain Impact on the Dimensions of Quality of
Life (Ferrell, Rhiner, Cohen & Grant, 1991) was used to
develop a model for the study. The Ferrell et a1. (1991)

model builds on previous work by the researchers (Ferrell,

8
Wisdom & Wenzl, 1989; Padilla, Grant & Ferrell, 1991; and
Ferrell, Grant, Padilla, Vemuri & Rhiner, 1991). In 1989,
Ferrell et al. studied quality of life as an outcome
variable in 150 cancer patients including twenty-two breast
cancer patients. Their findings using a quality of life
tool demonstrated the following major factors were perceived
by patients as associated with quality of life:
psychological well-being, worry and nutrition.

In a study of 233 cancer patients over age 65 years of
age with pain, Ferrell, Wisdom & Wenzl (1989) results
indicated that there was a significant difference in quality
of life between patients with and without pain and that pain
was inversely related to functional status. This study
reinforced the relationship of concepts of pain, functional
status and overall quality of life.

Padilla, Ferrell, Grant & Rhiner (1990) studied 41
cancer patients (15% breast) to further define good or poor
quality of life. The study generated three very broad
categories of attributes of quality of life: physical,
psychological and interpersonal well-being.

Then, in 1991, Ferrell, Grant, Padilla, Vemuri and
Rhiner studied the experience of pain and perceptions of
quality of life using the results of the three studies
previously described. The domains or dimensions of quality
of life were revised to include physical well-being and

symptoms, psychological well-being, social concerns and

9

spiritual well-being. The model illustrates the influence
of pain on the four major dimensions of quality of life.

Ferrell, Rhiner, Cohen & Grant (1991) further refined
the model in a study of the impact of cancer pain on family
caregivers. Although the four dimensions of quality of life
remained the same, the components of the dimensions were
revised (See Figure 1).
DQmain_cf_2h¥sical_flell:being

The domain of physical well-being and symptoms is
conceptualized as the components of functional ability,
strength/fatigue, sleep/rest, nausea, appetite and
constipation. Many of the these physical symptoms may be
associated with breast cancer surgery, may cause profound
symptom distress post-operatively. Symptom distress and
functional limitations may severely threaten a patients'
independence and life style. In a study of 66 patients with
cancer, Ferrell, Ferrell, Ahn and Tran (1994) suggest that
patients whose pain is managed are more likely to have
better sleep, functional abilities and emotional and
cognitive status.
Dannin_9f_Esxchelegical_flellzfleins

Psychological well-being was conceptually defined to
include the components of anxiety, depression,
enjoyment/leisure, pain distress, happiness, fear, and
cognition/attention. An important aspect of psychological

well-being is meaningful because psychological distress and

Emmi, Pain impact on the dimensions of quality of life (Ferrell, Rhiner, Cohen &

 

 

 

 

 

 

13mmL199FI
PHYSICAL WELL-BEING PSYCHOLOGICAL
AND SYMPTOMS WELL-BEING
Functional Ability Anxiety
Strength/Fatigue Depression
Sleep/Rest Enjoyment/Leisure
Nausea Pain Distress
Appetite Happiness
Constipation Fear
Cognition/Attention
RPAINfl
It 31
SOCIAL SPIRITUAL
CONCERNS WELL-BEING
Caregiver Burden Suffering
Roles & Responsibilities Meaning of Pain
Affection/Sexual Function Religiosity
Appaummm

 

 

 

 

well-being are often altered by disease and treatment

interventions.

Was

The domain of social concerns is comprised of caregiver

burden, roles and responsibilities, affection/sexual

function and appearance.

Social concerns is sometimes

referred to as interpersonal well-being. Affective changes

experienced by patients may be attributed to the impact of

surgery on relationships.

11
E . E 5 . 'l 1 ll JJ-E .

The domain of spiritual well-being includes the
components of suffering, meaning of pain and religiosity.
Spirituality was originally included as part of
psychological well-being but was reclassified a domain of
its own as research showed suffering, religiosity and
meaning of pain are frequently expressed by patients as
quality of life. A diagnosis of cancer often generates a
crisis of meaning, frequently affecting a persons ability to
satisfactorily meet their spiritual needs of/for self-
acceptance, relationships and hope.

Ei l l' E i] E . I l _ ll E' . E i ].|
Q£_L1£§_Mnd£l

The Impact on the Dimensions of Quality of Life model
(Ferrell, et al., 1991) was adapted for the purposes of this
study, to explore and describe older women's perceptions of
pain and physical well-being following surgical procedures
for breast cancer. While the Ferrell et al. (1991) model
examines the relationship of pain to the four domains of
quality of life in elderly cancer patients, it is the intent
of this study to focus on a specific segment of the model,
pain and physical well-being. A schematic representation of
the adapted model is presented in Figure 2. The impact of
pain on physical well-being was specifically chosen as the
focus of the study as a result of personal interest and
needs suggested by observations and literature. The

conceptual model adapted for the study illustrates patients'

12

figure; Adaptation of the Pain/Impact on the Dimensions Quality of Life Model.

     
 

QUALITY OF LIFE IN
ELDERLY WOMEN WITH
BREAST CANCER

    
    
  

PHYSICAL WELL-BEING

W

   
   

SOCIO-DEMOGRAPHICS

 

W5

 

     
   

     
        
  
  
  
   

  
  
  
   
  
 

 
 
  
   
 
 
 

Pain Moderate activities Age
Weakness Vigorous activities Education
Fatigue Uftjng Marital status
Double sleeping Climbing one flight Household members
Nausea Climbing several flights Race/ethnicity
Poor appetite Bending Current work situation
Household income

Constipation Walking > mile
Walking several blocks
Walking one block

 
   
   

13
perceptions of quality of life in relation to how pain
corresponds with symptoms and functional abilities.

As the schematic prepresentation depicts, quality of
life in elderly women with breast cancer may be impacted by
physical well-being and patient demographics. Physical
well-being is comprised of symptoms and functional
abilities. The study includes pain as a symptom rather than
a separate entity as in the Ferrell, et al. (1991) model.
The adapted model also considers the relationship between
pain and pain and physical well-being by sociodemographic
factors.

REVIEW OF THE LITERATURE

A dearth of literature relative to pain and quality of
life is found in the literature. Studies related
specifically to pain and physical well-being which are
focused on post-operative breast cancer surgery are few in
number. A literature search revealed five research-based
studies specifically relating to post-operative breast
cancer surgery pain and well-being; four of these were
printed in English.

Wife

Boman, Bjorvell, Cedermark, Theve and Wilking (1993)

studied the effects of early discharge from the hospital on
women who have had mastectomy procedures for primary breast
cancer. Although this study was developed to assess patient
perceptions of discharge with silicone rubber suction drains

in place, the investigators also included pain and other

14
dimensions of psychosocial well-being and health after
hospital discharge. Pain was assessed at two weeks after
the operation as a point at or between unbearable and non-
existent. The findings indicated that 93% of the women
(ng84) discharged from the hospital early reported the
presence of unmanaged pain as a problem at home two weeks
after surgery. Although patients were asked about the
presence of pain and its intensity, only the presence of
pain was reported in the results.

Ferrell, Grant, Rhiner and Padilla (1992) studied 5772
hospital admissions to the City of Hope Medical Center, a
designated comprehensive cancer center, which included 2977
unscheduled admissions. Symptom management, specifically
pain and nausea, were cited as reasons for hospital
admission and more than 50% of those unscheduled admissions
occurred within two weeks of hospital discharge. Ferrell
and colleagues noted symptom control in the home for cancer
patients, especially pain management, would improve the
quality of life for both the patient and caregiver. Another
point of interest noted was that the use of high technology
methods of care, while providing a means of maintaining
physical comfort for the patient, also burdened the patients
and caregivers because of the additional stress advanced
technology creates.

In a study of 34 post-operative oncology patients
diagnosed with breast cancer (56%) and other cancers (44%),

Paice, Mahon and Faut-Callahan (1991) interviewed

15

hospitalized patients regarding their post-operative pain
experience. The results of this study suggested pain was
not well-controlled. Seventy-one percent of patients
responded they had pain. Thirty-eight percent reported
moderate or severe pain at the time of the interview which
was within one to 31 days after surgery (x, 5.38 days).

Kurtz, Kurtz, Given and Given (in press), investigated
whether family caregiver reports of symptoms were in
concordance with patient reports and whether certain other
variables such as patient/caregiver depression, caregiver
optimism and perceived impact on caregiver health would
explain discrepancies in patient and caregiver reports. Of
the 216 subject convenience sample, 27% represented breast
cancer patients. Kurtz et al. (in press) suggest that
education of caregivers to the nuances of the presentation
of symptom distress is important to the reporting and
interpretation of symptom distress to assure the appropriate
symptom management may be initiated. Among the symptoms
assessed (nausea, poor appetite, insomnia, fatigue, cough,
constipation and diarrhea), pain was reported as present by
116 of the patients (53.7%).
W

Common side effects of general anesthesia and narcotics
administration are constipation and nausea. Constipation is
frequently perceived as a problem among the elderly and
frequently report this system to health care providers

(Ebersole & Hess, 1990). While opioid analgesics are the

16
cornerstone of pharmacologic management for post-operative
pain, patients (especially the elderly) report bowel
function problems as a side-effect (AHCPR Guidelines, 1992).

Fatigue is a well-recognized phenomenon after surgery.
Schroeder and Hill (1993) found in a study of 84 patients
that a strong influence between prolonged post-operative
fatigue in those patients diagnosed with cancer even after
curative surgery as compared to those with benign disease.
Fatigue becomes significant when it begins to have an
adverse effect on a person's well-being and interferes with
daily functions and relationships.

In defining the content domain of quality of life for
cancer patients, Padilla et al. (1990) studied forty-one
cancer patients (six.of whom had breast cancer). Patients
were asked what contributed to poor or bad quality of life.
Patients reported feeling weak, disabled or not strong
contributed to their perception of poor or bad quality of
life. Most discussions of fatigue incorporate weakness as
part of the definition of fatigue. Weakness in and of
itself is not discussed.

FunctienaLAbilifx

Functional ability is a special concern among the
elderly. It is suggested that 45% of people age 65 years
and older and living at home have some degree of functional
limitation (Campbell & Thompson, 1990). Kurtz, Given, Kurtz
and Given (1994) studied the interaction of age, symptoms

and survival status on physical and mental health of

17
patients with cancer (25.3% were breast cancer) and their
families. Results of this study (n=208), patient age was
not a significant factor for any of the variables. The
results did suggest that symptoms proved to be the only
significant predictor of functional dependencies in
activities of daily living (f=9.47, p=0.002).

Satariano, Ragheb, Branch and Swanson (1990) studied
444 women to determine difficulties in functional ability
reported by middle-aged elderly women with breast cancer.
Results showed that women age 55-64 with breast cancer,
after surgery, were more likely than the control group to
report a greater problem with physical activities three
months after surgery, especially in those activities
involving upper-body strength. In subjects age 65-74,
breast cancer subjects were twice as likely as controls to
have difficulty with upper-body strength.

Mor, Wilcox, Rakowki and Hiris (1994) reported a
longitudinal study of 7527 patients which involved aging,
matched Medicare claims and six year functional status
transition rates, and hospitalizations were calculated. Mor
et al. (1994) found that more women than men experienced
functional decline and institutionalization. In their
study, Mor et al. (1994) found illness and perceived health
(quality of life) are better indicators for future outcomes

than age or current functional status.

18
Summary ‘

In summary, these studies suggest that post-operative
pain is not well-managed. Patients may be discharged from
the hospital either with or developing both pain and other
symptoms, or physical limitations. Patients and their
families may be impacted. The need to improve post-
operative pain and symptom management for women following
breast cancer surgery is a facet of care needing attention
by health care professionals from multiple disciplines
including nurses in advanced practice. Nurses in advanced
practice can play an important role in this effort at the
individual, family and community level through education,
advocacy, case management and research. The
multidimensional characteristics and domains defining
quality of life have been identified and been widely
accepted. The relationship between pain and the other
components of quality of life have not been systematically
studied to assess the role or interactions of intervening
variables such as weakness, fatigue, trouble sleeping,
nausea, poor appetite and constipation specifically related
to quality of life after surgery for breast cancer in
elderly women. These interactions may be complex and must
be clarified by systematic assessments of pain and other
symptoms or functional ability. .

The multidimensional domains and characteristics of
quality of life have been identified and defined. The

relationship between pain and other components of quality of

19
life have not been systematically studied to assess the role
or interactions bf intervening variables such as weakness,
fatigue, trouble-sleeping, nausea, poor appetite and
constipation specifically related to quality of life after
surgery for breast cancer in elderly women. These
interactions may be complex and must be further clarified by
systematic assessments of pain and other symptoms and/or
functional abilities.
METHODS
Researanesign
‘This study was a descriptive correlational study to
explore and describe older women's perceptions of pain and
physical well-being (symptoms and functional ability) within
eight weeks of surgery for breast cancer procedures, using
secondary data analysis from a larger, longitudinal
community cancer study. The larger study is following
incident diagnosis of breast, colorectal, lung and prostate
cancer (5R01NCA0915-0, "Family Home Care for Cancer--A
Community-based Model," - Barbara Given, PhD, RN, FAAN and
Charles W. Given, PhD, Principal Investigators). This
research project is a collaboration between Michigan State
University (MSU) College of Nursing; College of Human
Medicine, Departments of Family Practice, Medicine and
Surgery; the Cancer Center at MSU (CCMSU); and the MSU

Cancer Treatment Center (MSUCTC).

20

The sample size is comprised of 117 patients. Data was
collected from patients by phone interview by eight weeks of
hospital discharge.
We

The target population for this study is women having
breast cancer surgical procedures. Criteria for inclusion
of patients in the study include the following:
1. Female
2. New diagnosis - an incident case of breast cancer with

breast cancer surgery as initial form of treatment
3. English-speaking
4. Cognitively intact
5. Age 65 years or over
6. No hospitalizations in previous 60 days for other

problems
7. Assessment within eight weeks of surgery

Data were collected from patients within eight weeks of
hospital discharge regarding pain management and the impact
of pain on physical well-being, specifically physical
symptoms and functional ability. The eight week point
appears to reflect a milestone in the clinical and treatment
course. Specifically, the observation point was selected to
determine the patientsi perceptions of pain and physical
well-being within eight weeks of hospital discharge when
surgical pain may still be problematic (Kroner, Krebs, Skov

a-Jorgensen, 1989).

21
E l : J] l' E 1

Participants in the study were informed that they were
participating in a longitudinal study that would involve
several encounters by telephone by a nurse recruiter. They
were told that participation was entirely voluntary and that
they could withdraw at any point. Confidentiality was
explained to the participants and informed consent was
obtained. The subjects enrolled during the incident
hospitalization.

E I : J] l' E . H 'l 1. !'

Nurse recruiters were identified to recruit patients
during hospitalization. The nurse recruiters, following
criteria for accrual, reviewed medical records and
identified patients eligible for this research. Patients
were enrolled while still in the hospital, and signed
consents from the community were sent to Michigan State
University (MSU). Patients were then followed for up to 52
weeks by the research team at MSU. Patients were recruited
through 23 community hospitals affiliated with the College
of Human Medicine, College of Nursing and Cancer Center at
Michigan State University. Once identified by a nurse
recruiter, each patient had_the study described to her, a
brochure given, and her consent obtained in writing. Once
signed consents were obtained by Michigan state University,
patients were then assigned to interviewers for data

collection.

22
W

Nurses, medical students and epidemiology students were
recruited and trained to be data collectors. The
interviewers participated in extensive training sessions
that included presentation of protocols and training
manuals; practice sessions, taped interviews with each
other; practice interviews with the principal
investigator(s); and an audited interview with the initial
client (Collins, Given, Given & King, 1988). On-going
quality assurance measures included submission of one taped
interview per month to assure protocols are followed;
monthly booster sessions regarding protocols were held. Ten
percent of actual interviews and records for each data
collector were also checked by the principal investigator(s)
or designees to assure that protocols relative to specific
time frames for calls were followed reliably.

: Ii 1 E El 'l' E M . I]

For the purposes of this study, pain and physical well-
being were operationalized as scores on the various tools
used. Physical well-being for this study was defined as
functional abilities such as lifting heavy objects or
participating in strenuous sports, climbing several flights
of stairs, or walking several blocks, and the symptoms of
nausea, weakness, trouble sleeping, poor appetite, fatigue
and constipation.

The symptoms of weakness, fatigue, touble-sleeping,

nausea, poor appetite, and constipation, were

23
operationalized as scores on relevant portions of the
Symptom Experience Index (Given et. al, 1994) (See Appendix
C). For the Symptom Experience Index, each symptom is
reported as to presence, severity and the extent to which
the symptom has disrupted regular daily activities.
Subjects were asked if they experienced the symptom (1=yes,
2=no) and if so, how severe was it and the severity
reported as mild, moderate or severe (range 1-3) where
1=mild, 2=moderate, and 3=severe.

Functional ability or activities of daily living,
activities usually performed during the course of a day such
as carrying groceries, moving a table, bending, and walking
one block, were operationalized as scores on nine questions
of the Medical Outcomes Study Health Status Questionnaire--
SF36 (Stewart, Hay & Ware, 1988) (See Appendix B).
Functional ability was assessed eight weeks after hospital
discharge. Each functional ability was assessed as (3) Yes,
limited a lot, or (2) Yes, limited a little, or (1) No, not
limited at all. A mean for each category was calculated.

Sociodemographic data was collected. The parameters
calculated included age, education, marital status, current
work situation, household members and race/ethnicity
(Appendix A). i
W

Subjects for the larger, longitudinal study include an
equal number of breast, colorectal, lung and prostate cancer

patients. The rationale for this selection was based on the

24
lack of literature describing continuing care for elderly
patients with these four common cancers. If cognitive
deficits were present, patients were excluded from study
participation. The research subjects were not compensated
nor did they incur additional financial costs as a result of
their participation in the study. No advertising was done
to recruit study participants (See Appendix E for UCRIHS
letter of approval).

The anonymity and confidentiality of study participants
was safe-guarded in the following ways: 1) by use of subject
identification numbers on all instruments, 2) by release of
research data in aggregate form only, 3) by omission of
agency names and/or identification in all presentations and
reports, and 4) by not providing confidential interview data
given by subjects back to the agency or participating
physicians.

Patients were not placed at increased risk by
participating in this study. Participation involved no
physical activity by the patients. Subjects were free to
decline participation and could withdraw from the study at
any time with the assurance that their refusal to
participate would in no way alter the care that they would
receive from their home care agency, hospital or nurse
practitioner or physician. Informed consent was obtained
from each subject and a consent form signed. This study was

approved by Michigan State University Human Subjects

25

Committee (See Appendix D for the UCRIHS letter of
approval).
Instrumentation

A demographic instrument was utilized to collect
sociodemographic information for the purposes of this study
(Appendix A). To measure the patients' perceptions of pain
and physical well-being, two instruments were used: the
Symptom Experience Index and the MOS-F836. The Symptom
Experience Index, developed by Given et al. (1994) includes
34 common symptoms that are rated as to presence, severity
and life disruption. The study, guided by the adaptation of
the Pain Impact on Quality of Life model Ferrell et a1.
(1991), included only six of the symptoms: weakness,
fatigue, trouble sleeping, nausea, poor appetite, and
constipation. Patients were asked to report the presence of
symptoms, and the severity of each symptom from moderate to
severe (1-3). I

The Symptom Experience scale is a modified version of
McCorkle's (1978) Symptom Distress Scale (Kurtz, Given,
Kurtz 8 Given, 1994). This measure has had limited
reliability and validity testing. It has primarily been
used to measure symptom distress in elderly cancer patients.
In a study of 196 patients with cancer, the modified measure
was found to have good reliability (alpha=.86) (Given,
Stommel, Osuch, Kurtz 8 Kurtz, 1993). In another study of
150 cancer patients, Kurtz, Kurtz, Given and Given (1991)

used a modified symptom scale that included the symptoms of

26
cough bowel problems, pain severity of pain, nausea and
severity of nausea. Kurtz et al. (1995) noted a reliability
(alpha=.70) for the reduced scale._ For the symptoms pain,
nausea, fatigue, poor appetite, trouble sleeping,
constipation and weakness, alpha is not reported because
these are discrete symptoms of different body systems and
reliability in the usual sense would not be expected. A
coefficient alpha as low as .61 represents acceptable
agreement if the instrument is not new (Knapp 8 Brown,
1995). Knapp and Brown (1995) further state that although
there is considerable disagreement regarding the subject to
number of variables ratio, the most commonly recommended
ratio is ten subjects per variable.

The patient's functional status was measured with use
of the Medical Outcomes Study--FS36 (Stewart, Ware 8 Brock,
1981). The SF36 is a 36-item, self-reporting multi-item
scale measuring each of eight health care concepts (Ware 8
Sherbourne, 1992). The health concepts included in the
survey are physical functioning; scoring as above and seven
other parameters not under investigation in this paper are
also included in the SF36.

The Medical Outcomes Study--FS36 (Stewart, Ware 8
Brock, 1981) has been widely used and tested and found to be
psychometrically sound in a wide variety of patient
populations (Stewart, Hay 8 Ware, 1988). The SF36 is a 36-
item, self-report multi-item scale which measures eight

health care concepts (Ware 8 Sherbourne, 1992). The health

27
concepts addressed in the instrument which are a focus in
this study are functional ability and role limitations.
Nine functional ability items were used including vigorous
activity, moderate activity, lifting/carrying, climbing
several flights of stairs, climbing one flight of stairs,
bending/kneeling, walking more than one mile, walking one
block, and walking several blocks. Stewart, Hay and Ware
(1988) compared reliability coefficients using Cronbach's
alpha, for the items in the functional ability section of
the measure. Alpha values ranged from .81 to .88. For the
purposes of this study, Cronbach's alpha was computed for
the nine physical limitations (alpha=.79).
RESULTS

Table 1 summarizes the sociodemographic data for the
sample. Most subjects were Caucasian. Marital status was
missing from the data provided for 76.9% of the sample.
80.3% of the sample had at least a high school education.
About 65% of the subjects lived with another person, and
most of the subjects were not employed. Although marital
status was missing for 76.9% of the sample, the subjects may
have considered that information captured in the question
regarding household members, as approximately 50% responded
that they lived with their spouse. Household income had no
data available for 97.4% of the sample.
W

To answer research question number one: What is the

relationship between perceived pain and physical well-being

28

 

Table 1.
- 'oo-uoq ooo. .- . ‘ ° ' 0 0‘ qua ‘ e=
Characteristics Frequency Percent
PATIENT AGE
65-74 years 76 65.0
75-84 years 37 31.6
85+ years 3 2.6
No data available 1 <1.0
EDUCATION
Less than high school 23 19.7
Completed high school 56 47.9
Greater than high school 38 32.4
MARITAL STATUS
Married 16 13.7
Not married 11 9.4
No data available 90 76.9
HOUSEHOLD MEMBERS
No one 41 35.0
Spouse 62 53.0
Other 14 12.0
RACE/ETHNICITY
Caucasian 112 95.7
African-American 4 3.4
Not specified ' 1 <1.0
CURRENT WORK SITUATION
Employed 7 6.0
Homemaker - 29 24.8
Not employed 81 69.2
HOUSEHOLD INCOME
$-4999 2 1.7
5000-9999 1 <1.0
No data available 114 97.4

 

within the first eight weeks of hospital discharge among

women who have had breast cancer surgery, the frequency of
occurrence and average severity of the individual symptoms
for those reporting symptoms were computed (Table 2). The

severity of the symptom was scored from one to three with

29
Table 2.'

 

 

SEVERITY or smrrous
SYMPTOMS 191nm: 1 MOD= 2 SEVERE= 3 synogrpl'ms NONE=0 33:16::
pmmmn' - amownm
Pain 29 (24.3%) 16 (13.7%) 1 (<1.0%) 46 (39%) 71 (61%) 1.39
Home 13 (11.1%) 4 (3.4%) 0 17 (4.5%) 100 (35.5%) 1.24
Fatigue 45 (33.5%) 26 (22.2%) 6 (5.1%) 53 (65.3%) 40 (34/2%) 1.49
Troubh-eleeping 16 (13.7%) 19 (16.2%) 6 (5.1%) 41 (35%) 76 (65%) 1.76
Poor appetite 12 (10.3%) 3 (6.3%) 2 (1.7%) 22 (13.3%) 95 (31.2%) 1.55
Common 10 (3.5%) 9 (7.7%) 1 (< 1.0%) 20 (17.1%) 97 (32.9%) 1.55
Weakness 13 (11.1%) 13 (11.1%) 3 (2.6%) 29 (24.3%) 33 (75.2%) 1.66
the higher the score, the higher the severity. Fatigue

(65.8%, D=77) was the most frequently reported symptom. Of
those reporting the presence of fatigue, forty-five (38.5%)
reported mild fatigue, twentyesix (22.2%) reported moderate
fatigue and six (5.1%) reported severe fatigue. The average
severity among those reporting the presence of fatigue was
1.49.

Pain (39%) was the second most frequently reported
symptom present in the eight week period following breast
cancer surgery. Among those reporting the presence of pain,
29 (24.8%) reported mild pain, sixteen (13.7%) reported
moderate pain, and one (<1%) reported severe pain. The

average severity among those reporting pain was 1.39,

between mild and moderate.

30

Trouble sleeping (35%, n=41) ranked as the third most
prevalent of the symptoms reported. Sixteen subjects
(13.7%) reported mild trouble sleeping, 19 (16.2%) reported
moderate trouble sleeping and 6 (5.1%) reported severe
trouble sleeping. Although trouble sleeping was the third
in terms of numbers of subjects reporting the symptom,
trouble sleeping scored the highest (1.76, between mild and
moderate) for the average severity of the symptom. The
presence of other symptoms such as weakness (24.8%), poor
appetite (18.8%), constipation (17.2%), and nausea (14.5%)
were reported to lesser extent respectively.

Functional limitations of the sample are reported in
Table 3. The severity of the limitations were ranked from
one to three with the lower the score, the more limitation.
Limitation of vigorous activities such as lifting heavy
objects, participating in strenuous sports (76.3%) was the
most reported limitation. Of those with limitations of
vigorous activities, 48 (42.1%) reported a lot of limitation
and 39 (34.2%) reported a little limitation. The average
severity of limitation was 1.45, midway between limited a
little and limited a lot.

The second most frequently reported limitation (54.6%)
was the ability to walk more than one mile. Forty (36.4%)
subjects reported a lot of limitation and 25 (18.2%)
reported a little limitation. Limitation in the ability to
walk more than one mile was scored as the most severe

limitation (1.33).

31

 

Table 3.
1111- e i‘ 0-0 0 e 03- .9 . ‘u‘ s.
EightjeekuLSurgerx
LIMITATIONS
Symptom Missing
Yes, Yes, Total No, not Average Data n
limited limited Limitations limited at limitation
a lot=1 a little=2 all=3 for those
nwmhs
any level
of
limitation
Moderate
activities such as
moving a table, 28 (24.1%) 30 (25.9%) 58 (50%) 58 (50.0%) 1.52 1 116
bowling, or
phyins solf
Vigorous
activities such as
lilting heavy
objects, 48 (42.1%) 39 (34.2%) 87 (76.3 %) 27 (23.7%) 1.45 3 114
participating in
strenuous spbrts
Lifting or
carrying 17 (14.9%) 35 (30.7%) 52 (45.6%) 62 (54.4%) 1.67 3 114
groceries
Climbing several
flights ofstairs 20 (17.4%) 27 (23.5%) 47 (40.9%) 68 (59.1%) 1.57 2 115
Climbing one
flight of stairs 8 (6.9%) 14 (12.1%) 22 (19%) 94 (81%) 1.64 1 116
Bending,
kneeling or 21 (18.0%) 33 (28.2%) 54 (46.2%) 63 (53.8%) 1.61 0 117
steeping
Walking more
than one mile 40 (36.4%) 20 (18.2%) 60 (54.6%) 50 (45.4%) 1.33 7 110
Walking several
blocks 21 (18.1%) 25 (21.6%) 46 (39.7%) 70 (60.3%) 1.54 1 116
Walking one
block 11 (9.4%) 15 (12.8%) 26 (22.2%) 91 (77.8%) 1.58 0 117

 

Limitation in

table, bowling, or

moderate activities such as moving a

playing golf was reported by 50% of the

32
subjects. Of those reporting this limitation, 28 (24.1%) of
the subjects reported a lot of limitation and 30 (25.9%)
reported a little limitation.- The average severity was 1.5,
midway between limited a little and limited a lot.

Research question number one was further answered by
computing correlation coefficients to describe the
relationship between pain and other symptoms (Table 4) and
phySical limitations (Table 5). Pain was operationalized as
a score on the Symptom Experience Index. Trouble sleeping
(19.27, ps.003) and'poor appetite (r:.19, p=.035) were
correlated significantly with pain. None of the functional
ability limitations correlated significantly with pain. As
expected, a negative correlation exists between pain (for
which a higher soore reflects more pain) and the physical
limitation items (for which a higher score means fewer
limitations), even though the relationships were not found
to be statistically significant.

The functional ability limitations reported by patients
were those that may impact routine daily activities and
roles. Moderate activities include activities like
preparing meals and doing dishes. A limitation in the
ability to lift or carry groceries, as reported by 52
subjects (45.6%), may impact the woman's perception of the
role of wife and grandmother. Lifting is involved in

grocery shopping, a function many wives in this age group

33

 

Nausea Fatigue Trouble Poor Constipation Weakness
Sleeping Appetite
Pain
Nausea .1150
. 38 .217
Fatigue .0637 .0415
‘ n= .495 p= .657
Trouble .2731 . 1971 .2389
Sleeping p= .003" p= .033‘ p= .009*
Poor .1948' .2361 .1163 .3695 _
Appetite 38.039 n=0.10'I p=.212 n=.000'l
Constipation I .1150 .0600 .1962 .0679 .1739
p=.217 p=.521 p=.034" p=.467 p=.061
Weakness .0637 ‘ .1565 .2468 .2307 .2304 .1442
, ‘ p=.495. =.092 p=.007"' p=.012* p=.012‘ p=.121

 

see as their role.

Lifting limitations also affect the

ability to show affection to small grandchildren by holding

them.

Wm

To answer research question number two: Is there a

difference in the relationship between pain and physical

well4being by sociodemographic factors, a series of chi
square ()2) analyses were computed. Chi square analyses
were computed to test the significance of differences of
proportions in categories within the sociodemographic
variables. The sociodemographic variables of age,
education, household members and current work situation were

chosen for chi square analyses as there was adequate data

Table 5.

34

 

V.

V1

.qu
as .069 ”
p!- .513
' 4.1353 ~
8":“6:

goo

nil-.252

ens
39.769" .,

v.1257

13,-.177
_4xn
gs.470' :

(Inn.
pl} .998 _

n: «392,

V:

.3907
p: .000

.3654
pl: .0000

.1062
p- .257

.2332
all .012‘

.1518
93.104

.1739
n:- .062

.2093
p- .025‘

.2669
p- .005.

.1048
para .263

.0593
n- .527

.0755
p= .421

.1199
as .200

.0781
p= .405

.1991
p-.033‘

.2584
p- .007‘

.2994
33 .000‘

.4733
p8 .000‘
.m”
p- .010‘

.2901
p- .002'

.3574
g- .0000

.2959
p- .002‘

.5056
p8 .000‘

.3176
p: .001‘

.4218
p- .000

.4925
p- .000‘

.3841
p- .0“?

.3288
p= .000‘

.5044
pi- .000

.4745
p- .000.

.3381
38 .WO‘

V1

.2677
p- .004

.3057
3- .WI
O

.3032
p: .001
O

.6659
p- .000

.3471
p8 .000

.7046
p- .(XX)

 

available and it was hypothesized that there may be

proportionate differences.

1 l i l E i E l' 1 ll'l'l

It is important to note when interpreting this analysis

that there were 76 women in 65-74 year age group and 40

women in the 75+ age group.

The results of K: analyses for

age by symptom frequency were statistically significant (X3

significant, n<.05) for only the symptom of poor appetite
(pp.03).

There was a difference in proportions of people

35
who experienced poor appetite between age group 65-74 years
(13.2%) and age group 75+ years (30%) in that study
participants in the group age 75+ years reported a higher
proportion of poor appetite.

There were no statistically significant results for age
by functional limitations, although the X3 for the
limitation of walking more than one mile approached
statistical significance (93.05091). There was some
difference in the proportions of people who experienced the
limitation of walking more than one mile between age group
65-74 years (48.6%) and age group 75+ years (68.6%).

Perhaps if the sample sizes for age groups had been similar,
the results would have been different. The smaller numbers
6f patients in the age group 75+ may have skewed the data to
reflect that more limitations were present in this age
group. For instance, in the age group, 75+, there were
almost 50% fewer participants in the group than in the age
group 65-74 years.'

E l' | El 1' l 5 l E i E ll 1
Abilitx

Chi square analyses for patient education by symptom
frequency were statistically non-significant. Patient
education by functional ability computed statistically
significant (X3 significant, p<.05) only for the limitation
climbing one flight of stairs (p!.01003).

36
W
Ability

There was a difference in proportions of women who
experienced weakness between the Living Alone group (34.1%)
and the group Living with Another (12.9%). One explanation
for this finding is that those living alone feel weaker
because they are caring for themselves while those living
with another person may have less weakness because they are
receiving help from those living with them.

Household members by functional ability limitation
computed statistically significant (XLsignificant,
p3.04712). There was a difference in proportions of women
who experienced any limitation between the group Living
Alone (64.9%) and the group Living With Someone (44.1%).
Women living alone reported more functional limitations than
did those living with someels. An explanation of this may
be that those women living alone had to perform or attempt
to perform functions that those women living with someone
may not have had to do, such as functions necessary to
prepare meals and other household chores.

Or ‘0 10 . . Os 0 111,- 011 ‘0 ‘s or. s or:

The results of chi square analyses for current work
situation by symptom frequency and physical limitations were
statistically non-significant. There were no differences in
proportions of women for symptom frequency or physical

limitations between the group employed and the group not

37
employed. As would be expected fer the sample age group,
the employed group (n=36) was much smaller than the not
employed group (n=81).

In summary, the sociodemographic characteristics of
patient age, education, current work situation and household
members were generally not associated with the relationship
between pain and symptoms and functional ability, except for
the several exceptions described.

Chi square analyses were chosen because the Chi square
statistic can be applied to contingency tables to test the
significance of different proportions with groups. The
advantage of Chi square tests for the study is that as a
non-parametric statistic, rigorous assumptions regarding the
distribution of the critical variables were no required.

The study was secondarydata analysis and the demographic
characteristics were nominal and ordinal level data. The
disadvantage of the Chi square statistic is that it does not
analyze variance within the sample groups.

SUMMARY AND IMPLICATIONS.
LimitationsJLthLStndx

Limitations of this study may have affected the
significance of the variable relationships or the ability to
generalize the findings to a larger population. Only
selected symptoms from the Symptom Experience tool were
studied as to their affect on the quality of life domain of

physical well-being. This tool has not been widely used and

38
additional research using subsets of the tool in a wider
variety of populations would be appropriate.

A convenience sample was obtained by recruiting
participants from twenty-three community hospitals
affiliated with Michigan State University. The sample was
essentially Caucasian. Future studies should address a more
ethnically diverse population and other under-served or at-
risk populations.

Functional limitations and presence of symptoms were
generally not associated with demographic factors such as
age, household members, education and work situation.
Further study to determine whether these variables may
impact symptoms and functional limitation is needed..

This study did not include the analysis of pre-
operative assessment of symptoms and functional ability.
Thus, there was not a method to identify how much of the
perceived post-operative symptom distress and functional
ability were carry-overs from pre-operative morbidities.

Unfortunately, the study sample lacked ethnic
diversity. Any attempt to develop protocols or care plans
to address either problems related to symptom management or
physical functioning in the post-operative period should
take into account the needs of our culturally and ethnically
divers populations. In developing plans that involve social
support, it is important to note that African-American and
Mexican American cultures have elements of cultural

uniqueness in terms of support and expression of symptoms

39
and illness (Jackson, Neighbors 8 Gurin, 1986; Giger 8
Davidhizar, 1991).
I J' l' E El 1 H . E !'

Implications for advanced practice nursing in the areas
of clinical practice, education and research were evident
from the study. .

The symptom of fatigue was present in 65.8% of the
study participants (n=77) with an average severity of mild
to moderate among people who reported any level of fatigue.
The nurse in advanced practice, in the role of teacher]
coach, can collaborate with the patient to develop plans and
to provide anticipatory guidance to minimize fatigue in the
post-operative period.

Post-operative pain (39.5%, n=46) was also reported to
be a prevalent symptom within the eight weeks of hospital
discharge following breast cancer surgery among study
participants with an average severity of mild to moderate
pain among those reporting any level of pain. Trouble
sleeping (35%, n=41) and weakness (24.8%, n=29) were also
perceived to be prevalent symptoms during the post-operative
period. The symptoms moderately to strongly correlate with
each other and if one or more symptoms were controlled,
perhaps others would then be controlled as well. The
control of symptoms would then, as described in the
conceptual model, increase the patients' quality of life and
decrease costs. Part of nursing's role is to examine how

inadequate symptom management impacts the use and cost of

40
services by increasing numbers of encounters for health care
services. .

Perioperative patient education regarding post-
operative fatigue, pain management, sleeping and eating,
and, the inter-relatedness of these symptoms is necessary.
Older women following surgery for breast cancer need to be
taught to notify the health care provider (specifically who
and when) if medications taken as prescribed do not
alleviate the pain or cause other symptoms such as trouble
sleeping or constipation. To assist in preventing pain or
discomfort and trouble sleeping, post-operative patients
should be taught to elevate the operative aim and hand by
supporting it on the back of a chair or sofa and to position
self while lying so the operative side is up and not
dependent to reduce the effect of lymphedema and surgical
site tension and resulting discomfort. To further promote
relaxation and improve trouble sleeping, women should be
taught how to institute non-pharmacological interventions
such as imagery and jaw relaxation techniques (McCaffery 8
Beebe, 1989).

Seventy-six percent (n=87) of the subjects reported
limitations performing vigorous activities (average
limitation between limited a little and limited a lot),
54.6% (n=58) reporting limitations walking more than one
mile (average limitation between limited a little and
limited a lot). Information regarding the functional

limitations of the elderly post-operatively and the need to

41
assess whether the patient can function when returned home
are important based on the results of this study regarding
the amount of physical limitation found post-operatively in
the sample. Although it may not be expected that elderly
women would need to walk more than a mile or perform
vigorous activities in the post-operative period, the
inability to perform them may impact the woman's perception
of quality of life. For instance, vigorous activities
include lifting heavy objects; lifting a grandchild for hugs
may fall into this category. This information is important
to the advanced practice nurse, as case manager, in assuring
that the patient can return home and function safely.

The advanced practice nurse will need to draw on
his/her skills and background to provide case management for
elderly women'with breast cancer post-operatively to
coordinate services among providers (primary care,
oncologist, surgeon), payers and significant others to
assure symptom management and functional abilities are
maximized.

Implications for nursing education include the need to
provide instruction to undergraduate and graduate nurses
regarding physical functioning and symptom management post-
operatively in elderly women having breast cancer surgery
procedures. Nurses must be taught to both assess, educate
and intervene for the patient regarding post-operative

fatigue. Measures to minimize fatigue and improve the

42
patients' perceptions of quality of life are important to
the patients' overall healing process.

Nursing education must also focus on pain management
techniques and factors that may impede pain management from
the perspective of patients and practitioners. Nursing has
historically focused on care in acute care facilities,
particularly hospitals. As patients are discharged from
hospitals more quickly and care is shifting to community-
based or home-based care, nursing must respond by assuring
that nurses are able to identify unique circumstances in the
home environment that may impede symptom management and/or
physical abilities.

There are several implications for nursing research
gleaned from this study. Jacox (1992) suggests that the
problem of poor pain management is due primarily to the lack
of well-controlled clinical studies of methods of pain
management and the lack of use by practitioners of what is
known about pain management. The nurse in advanced practice
can provide information to nurses, physicians and other
health care providers regarding methods of pain control and
assist in research why others do not implement methods of
pain management that are known.

The study needs to be replicated with a population that
is more ethnically and socially diverse in order to make
inference about the impact of pain on physical well-being
and quality of life to the larger population. Future

studies should also account for disease stage, type of

43
breast procedure performed, analgesics prescribed and other
treatment modalities such as radiation therapy and
chemotherapy which impact symptoms and functional
limitations, The study was not able to study relationship
or impact of income and marital status on pain and physical
well—being; these should be considered in future studies.
Further research should also be undertaken to study the
impact of preoperative teaching and anticipatory guidance on
post-operative outcomes of symptom distress and physical
limitations.
Summer!

In summary, patients' perceived the presence of
symptoms and physical limitations within the first eight
weeks of hospital discharge following breast cancer surgery
procedures. Although this study did conclude that pain
directly impacted the symptoms of appetite and sleep and
vigorous activities of the participants, the presence of
other symptoms and functional ability limitations presents
challenges for the nurse in advance practice. This study
pointed out the disappointing fact of the pervasive presence
of symptoms and physical limitations in the post-operative
period for elderly wOmen following breast cancer surgery

procedures and our seeming inability to manage them.

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WWW), 440-443.

APPENDIX A

DEMOGRAPHICS INSTRUMENT

Circle if: SiDRTENED

'HAVE I
PATIENN'HITHOUT'CAREBIVER TELEPHONE INTERVIEW

'Fanily Home Care for Cancer - A Community-Based Model'

Grant #2 R01 NRICA01915
Funded by the National Institute of Nursing Research and the National Cancer Institute
Barbara A. Given. PhD. RN. FAAN. and Charles H. Given. PhD. Co-Principal Investigators

NINR/NCI SCREENING _ _ _
"7 / ““

SCREENING CANCER PATIENT
NAME AND ADDRESS from Pre-Enrolllent For-

 

1. Name of Patient:
Address of Patient:

 

 

 

 

3. Telephone: ( )
4. Name and phone number of contact person if unable to reach patient:

 

 

 

 

Male:

Relation to patient:
Telephone: ( )
Location:

 

 

 

 

 

Attempts to contact patient (date and time).

 

 

 

 

 

 

NINR/NCI SCREENING 10 _ _/INT

—_—
_—
—

Introduction:

“Hello, my name is - . I am a project staff member for
the Family Care Study at Michigan State’UniverSity. Recently we sent you information
about the study and you signed a consent form and sent it back to us.‘

“The questions I would like to ask you will take approximately 45 minutes to an hour.
Is now a good time for you to answer these questions or would you like to schedule
another time. or perhaps. I could ask some of the questions now and schedule another
time to finish? Whatever is most convenient for you. Would you like to try some
now?‘

 

Interviewer: Set up appointment for interview:

 

Day lime

 

Interviewer: Some of the participants need to be reminded of the amount of
time and involvement that this study will require of them.

Only telephone conversations. although there may be home visits for
special circumstances.

Can withdraw from study at any time.

Can always contact us for infbrmation. at (517) 353.3843 ext 433 (Keely
Englesby). or 1-800-654-8219.

Interviewer will contact participant by telephone to set up appointment
at participant's convenience. Se f-administered questionnaire will

then be mailed to allow at least one week for patient to fill out.

bUNH

 

 

 

 

" Interviewer: If patient DOES want to participate: “

'Ne appreciate your willingness to participate. I would like to remind.you that all
information will be held in the strictest confidence and will not be linked to you
as an individual in any way. This information is necessary to describe the
situations of individuals with cancer as a group to try to identify needed
resources.‘

 

“ Interviewer: If patient DOES NOT want toparticipate: "

“Would you be willing to let us know what your reasons are for not participating
in the study at this time?‘

Reason f r 'n :

 

 

'At this time. we will not plan to contact you again. If for any reason you change
your mind and decide that you would like to participate. feel free to call us.
Do you have our number?‘

“Thank you for your time.‘

NINR/NCI WAVE I PATIENT w/o CAREGIVER TELEPHONE ID _ _ _/INT
DNfi:__ _:7__ __/__'::
Prior to interview— Enter date (month. day and year) and interviewer number on
each page. if indicated.

SDCIDDEHDGRAPHIC INFORMATION FOR CANCER PATIENT
1. Sex of patient: (check one) Male (1) Female (2)
2. What is your birthdate? (write in)
/ __l __
Hfinffil'Day IYEar

3. What is your highest level of education completed? (check one)

No formal education (1)

Completed grade school (2)

Completed some high school (3)

Completed high school (4)

Completed some college or technical training (5)
Completed college (6)

Completed graduate/professional degree (post baccalaureate
degree) (7)

NAIRefused (9)

4. What is your race or ethnic background? (check one)

Caucasian/White (1)
African American/Black (2)

Mexican American/His nic/Chicano (3)

Native American/Alas an

Oriental/Asian/Pacific Islander (5)

Other (6) (Specify )
NAIRefused (9)

5. What is your marital status? (check one)

Never married (1)

Married (2)

Divorced/Separated (3)
Widowed (4)

NAIRefused (9)

 

(GO TO NEXT PAGE)

NINR/NCI WAVE I PATIENT w/o CAREGIVER TELEPHONE ID /INT

6. In which county do you live?

 

(write in county)

NAIRefused
7. When was the month and year you moved to this county? (write in)

/
Ho—nffi/Year

Now we are going to ask you questions about who lives with you. and about persons who
might help you.

8. Who lives in your household with you? (check all that apply)

_ No one - lives alone (I)
_ Spouse (2)

_ Other (3)
_ NAIRefused (9)
9. Do any children live with you?

_ Yes (60 to 9a)
_ No (Go to 10)
_ NAIRefused

9a. If Yes was checked. then:

(a9A) How many children under 13 years of age?
__(write in nuuber)
(b9A) How many 13 to 17 years of age?
_ (write in nunber)
(c9A) How many 18 years or older?
_ (write in nulber)
9b. _ Any other children under 18 years of age (4)

(a98) How many children under 13 years of age?
(write in umber)

(b98) How many 13 to 17 years of age?
(write in halter)

(I TO NEXT PAGE)

NINR/NCI WAVE I PATIENT w/o CAREGIVER TELEPHONE ID _ _/INT

10.

9c. _ Adult relatives other than your children (18 years or older) (5)

(a9C) How many adult relatives?
(write in number)

9d. _ Other unrelated adults (18 years or older) (6)

(a9D) How many unrelated adults?
(write in nunber)

9e. _ NAIRefused (9)
(Interviewer: Step-daughter. -son: check as daughter. son.)

Is there someone who helps you with care of any type. including bathing. dressing.
medications. or even transportation? (check one)

_ Yes (1)
_ No (2) (If NO. go to question 11)
_ NAIRefused (9)

10a. If YES. who helps you? (Indicate relationship to patient. including step-
children. e.g.. if a daughter is helping her mother. check daughter)
(check as many as apply)

_Wife (1)

_ Husband (2)

_ naught” (3)

_ Son (4)
_Daughter-in-law (5)
_ Son-in-law (6)

_ Sister/sister-in-law (7)

_ Brother/brother-in-law (8)

_ Mother (9) ' -

_ Father (10)

_Aunt (11)

_ Uncle (12)

_ Niece (13)

_ Nephew (14)

_ Granddaughter (15)

_ Grandson (16)

_ Other (please specify ) (17)
_ NAIRefused (99)

10b. From among all the persons you have indicated that may help you. which one
person helps the most or is most willing to help should the need arise?
(write in)
Name of person and relationship:

(GO TO NEXT PAE)

 

NINR/NCI HAVE I PATIENT w/o CAREGIVER TELEPHONE IO _ _ IINT _

Note: We will refer to this person as your PRIMRY CAREGIVER.

10c. Does your primary caregiver live with you? (check one)

_ Yes (60 to question 11) (1)
_ No (Go to question 10d) (2)
_ NAIRefused (9)

10d.

Interviewer: If not spouse. then get mailing address and telephone Tamer
of primary caregiver:

 

Name:

Address:

City: State: Zip:

Telephone: ( )

Is this person paid by you. or is anyone paid to assist you?
Yes No

If yes. what is the weekly/monthly wage? S

 

 

 

 

 

 

 

11. Because of the need for assistance with cancer. did (check one)

You move to caregiver's home (Go to question 11a) (1)
Caregiver move into your home (Go to 11a) (2)

You move closer to caregiver (Go to 11a) (3)

Caregiver move closer to you (Go to 11a) (4)
You move to a facility that provides care (Go to 11a) (5)

Please describe facility: °

 

 

No one move (60 to question 12) (6)
NAIRefused (9)

11a. If movement occurred. what was the month and year of movement? (write in)

/ 1 NAIRefused (9)
ITO—nEfi/Year '—

(GO TO TEXT PM!)

APPENDIX B

MEDICAL OUTCOMES STUDY - F836

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>.060..xm ..m 0 3.00 20.0.0005. >....0..w ..< .0 .02 .000 0.2.0.
25030000.. 000 060... 05 00.0.00 50.:
500 00.00.00: 502. .0650 50> 5.2. 0.8.0.0.
0.00 0.0 0006 .50.. .3003 50. .000 05 00.50 .m

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0.0>0w >.0> 0.0>0m 0.0.0005. 0...). 0...). >.0> 0002 .000 0.0..0. .0300; .00. .000 0.... 00.50
00... 00> 0.60 0.00 .00.0>00 ..0.0>0 0006 2.0: .~

005.0000 .0350 50> .0000 .200 0.00 __..s 00050000 30. .x00 05

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>2: 0. 0201...... 0.20.53 :05 .20.?) 2; 37.22:,

APPENDIX C

SYMPTOM EXPERIENCE INDEX

 

 

 

 

m 0 0 N . 0 N . . N . 0505.; .0
m 0 m N . 0 N — N . 0.00.020 02.00.0500 .0
m 0 m N . n N . N . 00000.0 .0
m 0 0 N . n N . N . 0.00.0 .0 00000000
30.0.00... >..00....0 .0
m 0 n N p n N p N . 002.0“. .0
m 0 n N p n N . N . 00.00.00 0.000.... .n
m 0 n N p 0 N — . N . 0.00 .N
0 0 0 N F 0 N . N . .8302 ..
.0. .0. .0. .N. .p. .0. .N. .5 .N. .S 020h02>0
.2058 #2058 .2058 #2053 #2053 000.60 052.000.... 0.52 02 00>
5.000 >0w> .0000 0.200 .3520 02 .
.000 0.0..0.
.0000
30.100
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APPENDIX D

UCRIHS APPROVAL

 

OWEEU:
RESEARCH
AND
GRADUAJE
STUDIES

517M21m
FAX: 517/432-1171

traumas-awn»
nflslluuflnnmm
Mum

Wsmw.

   
 
  

MICHIGAN STATE

UNIVERSITY
February 26, 1996

 

To: Evelyn Bochenek
3213 West Holt Road
Mason, MI 48854

RE: IRE“: 96-110
TITLE: FEMALE BREAST CANCER PATIENTS' PERCEPTIONS OF
PAIN AND PHYSICAL WELL-BEING POLLONING
MASTECTOHY FOR BREAST CANCER
REVISION REQUESTED: N/A
CATEGORY: l-E
APPROVAL DATE: 02/26/96

The University Committee on Research Involving Human Subjects'(UCRIHS)
review of this projec: is complete. I am pleased to adVise that the
rights and welfare of the human subflects appear to be adequately
rotected and methods to obtain informed consent are appropriate.
herefore. the UCRIHS approved this pro3ect and any reVisions listed
above.

Rzlllhbz UCRIHS approval is valid for one calendar year, beginning with
the approval déte shown above. Investigators planning to
continue a prOJect be one year must use the green renewal
form (enclosed with t e original agproval letter or when a
project is renewed) to seek u te certification. There is a
maximum of four such expedite renewals possible. Investigators
wishing to continue a prOJect beyond that time need to submit it
again or complete reView.

REVISIONS: UCRIHS must review any changes in rocedures involving human
subjects, rior to tiation of t e change. If this is done at
the time o renewal, please use the green renewal.form. To
revise an approved protocol at any other time during the year
send your written request to the CRIHS Chair, requesting revised
approval and referenCing the project's IRB a and title. Include
in ur request a description of the change and any revised
ins ruments. consent forms or advertisements that are applicable.

paosnms/ .

Chisels: Should either of the followin arise during the course of the

work. investigators must noti 'UCRIHS promptly: (1) roblems

(unexpected side effects comp aints. etc.) involving uman

subjects or (2) changes n the research enVironment or new

information indicating greater risk to the human sub'ects than
existed when the protocol was previously reviewed an approved.

If we can be of any future help, lease do not hesitate to contact us
at (517)355-2180 or FAX (517)4 2- 171.

. fi—

vid 8. Wright, Ph.
CRIHS Chair

DEW:bed

Sincerely,

cc: Barbara A. Given

APPENDIX E

UCRIHS APPROVAL FOR LONGITUDINAL STUDY

 

OWNED?
RESEARCH
AND

GRADUATE
STUDIES

“7,55%”
VAX.SIII432-II7I

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(timesta-

AGUsaabmmeann
nuaunnflmmmm

MICHIGAN STATE

UNIVERSITY

June 6, 1995

To: Barbara A. Given
AZJO Life Seiences

RE: IRBI: 92-200
TITLE: FAMILY HOHE CARE FOR CANCER--A COMMUNITY-BASED
HOD L
REVISION REQUESTED: OS 25 95
CATEGORY: EU L VIEW
APPROVAL DATE: 06/05/95

The University Committee on Research Involving Human Sub ects'tUCRIHS)
review of this project is complete. I am pleased to adv as that the
rights and welfare of the human oubjects appear to be adequately
protected and methods to obtain informed consent are appropriate.
ggrefore, the UCRIHS approved this project and any rev sions listed
a vs.

RENEWAL: UCRIRS approval is valid for one calendar year. beginning with
the approval date shown above. Investigators planning to
continue a project be and one year must use the green renewal
form (enclosed with t e original a proval letter or when a
proi:ct is renewed) to seek ugdate certification. There is a
max um of four such expedite renewals ssible. Investigators
wishin to continue a project beyond the time need to submit it
again or complete review.

REVISIONS: UCRIRS must review any changes in procedures involving human
subjects, prior to initiation of t e change. If this is done at
the time o renewal. please use the green renewal form. To
revise an approved protocol at aha other time during the year
send your written request to the_ CRIHS Chair, requesting revised

.approval and referencing the preject's IRS I and title. Include
in your request a description of the change and any revised
ins ruments. consent forms or advertisements that are applicable.

vacuums]

Chances: Should either of the followin arise during the course of the
work. investigators must noti I UCRIHS romptly: {l) problems
(unexpected side effects, comp aints, e c.) involv ng uman
subjects or {2) changes in the research environment or new
information ndicating greater risk to the human sub ects than
existed when the protocol was previously reviewed an approved.

If we can be of any future help please do not hesitate to contact us
at (517)355-2130 or FAX (517)4 5- 171.

  
  

Wright. Ph.D.
UCRIHS Chair

08H2kaa/lcp

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