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thesis entitled
Colorectal Cancer: The Symptoms Experienced and

How They Affect the Patient's Functioning Ability

presented by
Pamela Joy Chuey, RN, BSN

has been accepted towards fulfillment
of the requirements for

Nursing

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MSU is An Afflnnntivo ActionlEqual Opportunity Institution
mm:

COLORECTAL CANCER: THE SYMPTOMS EXPERIENCED
AND HOW THEY AFFECT A PATIENT'S FUNCTIONING ABILITY

BY
Pamela Joy Chuey

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

1997

ABSTRACT

COLORECTAL CANCER: THE SYMPTOMS EXPERIENCED
AND HOW THEY AFFECT A PATIENT'S FUNCTIONING ABILITY

BY
Pamela Joy Chuey

Colorectal cancer is the third most common cancer
occurring in men and women in the United States,
specifically targeting the elderly. The incidence of this
cancer will continue to rise as our elderly population
increases. Despite the prevalence of this disease, little
is known about the patients' experience who are undergoing
treatment for colorectal cancer. This secondary analysis
consisted of 117 patients, age 65 years and older, diagnosed
with colorectal cancer who have reported their symptoms in
type, number, and severity, after the initiation of their
cancer treatment. The effect that the number and severity
of symptoms have on the patient's functional ability
(performing ADLs, IADLs, & mobility) were examined.

The findings from this study revealed that the combined
effects of the number and severity of symptoms a patient
experiences, the patient's age and current mobility, impact
functional ability. The patient's current mobility was
found to directly impact the patient's ability to perform
ADLs and IADLs. Advanced practice nurses can use these
findings to develop proactive plans of care targeted at
timely symptom management and the prevention of the

patient's functional decline.

This thesis is lovingly dedicated to my family
who have supported and encouraged me. To John,
whose love has carried me when school was a
bit much to bear. To Mea and Zack, whose laughter
and endless hugs continue to bring me joy.

To my extended family and friends who have helped
in many ways: watching my children, cooking meals,
cleaning house, providing encouraging phone
calls, pep talks, and a great supply of chocolate.

iii

ACKNOWLEDGMENTS

This author gratefully acknowledges the guidance of
Barbara A. Given, RN, PhD, FAAN. Her support, constructive
assistance, fast turn-around time, and drive for excellence
are appreciated. She is truly an expert in her field and a
gracious unsolicited advisor and mentor. Thank you.

Gratitude is also due to Brigid Warren, RN, MSN and
Laura Struble, RN, MSN, PhD for their participation on my
thesis committee and for constructive feedback. Brigid,
thank you for your support and encouragement to continue to
link research in my clinical practice long after completion
of this program. Laura, thank you for your support and
encouragement during the most difficult times in this
process.

A special thank-you to Manfred Stommel who graciously
gave his time and expertise in statistics. His ability to
take confusion and bringing about clarity with a flick of

his mouse is much appreciated.

iv

TABLE OF CONTENTS

LIST OF TABLES . . . . . . . . . . . .
LIST OF FIGURES O O O O O O O O O O O 0

INTRODUCTION . . . . . . . . . . .
Theoretical Framework . . . . . .
Review of Literature . . . . . . .

METHODS . . . . . . . . .
Operational Definitions
Age . . . . . . . .
Stages of Cancer .
Treatment of Cancer
Symptom . . . . . .
Symptom Count . . .
Symptom Severity .
Functional Abilities
Instrumentation . . . . .
Symptoms . . . . .
Functional Abilities
Treatment of Cancer .
Stages of Cancer . .

RESEARCH DESIGN . . . . . . . . . . . .
DATA ANALYSIS . . . . . . . . . . . . .
PROTECTION OF HUMAN SUBJECTS . . . . .
LIMITATION OF THE STUDY DESIGN . . . .
RESULTS . . . . . . . . . . . . . .

Description of the Sample . . . .
Answers to Research Questions

Discussion of the Results with the .

Framework . . . . . . . . . . . .

DISCUSSION 0 O O O O I O O O O O O O 0
sample C O O O O O O O O O O O O 0
Symptoms Experienced . . . . . . .

32
33
34
35
35
38
48
49

49
54

Table of Contents (cont.)

Symptom Count, Symptom Severity, and Functional
Ability O O O O O O O O O O O O O O O O O O O O O O 61

Implications for Advanced Practice Nursing . . . . . 67
Recommendations for Future Research . . . . . . . . 78
SWRY O O O O O O 0 O O O O O O O O O O O 0 O O O O O O 8 1
LIST OF REFERENCES 0 O O 0 O I O O O O O O O I O O O O O 8 3
APPENDICES O O O O O 0 O O O O O O O O O 8 5
Appendix A: MSU Family Home Care Cancer Study
Patient Consent Form . . . . . . . . . . 85
Appendix B: MSU Family Home Care Cancer Study
Caregiver Consent Form . . . . . . . . . . 88

Appendix C: UCRIHS Approval for Secondary Analysis . 90
Appendix D: Questionnaire for Measurement of

Symptom Complaints . . . . . . . . . . . . . . . 91
Appendix E: Questionnaire for Measurement of

Activities of Daily Living and Instrumental

Activities of Daily Living . . . . . . . . . . . 95
Appendix F: Questionnaire for Measurement of

Mobility . . . . . . . . . . . . . . . . . . . . 112

vi

LIST OF TABLES

Table 1: Sociodemographics of the Patient Population .

Table 2: The Type, Number, Percent, and SD of Symptom
Experienced Among Colorectal Cancer Patients in
Descending Order of Occurrence with Corresponding
Symptom Severity Mean and SD . . . . . . . . . . . . .

Table 3: Distribution of Symptom Count and Symptom
Severity Values . . . . . . . . . . . . . . . . . . .

Table 4: Means, SD, and Alphas of Functional Ability
scales 0 O O O O I O I O O O O O O O O O I I O O O O C

Table 5: Regression Analysis and Sig T of Symptom Count
and Average Severity on ADLs, IADLs, and Mobility . .

vii

Page

LIST OF FIGURES

Page

Figure 1: Constituent Theories, the Self-Care Deficit
Theory of Nursing . . . . . . . . . . . . . . . . . . . 6

Figure 2: Expressing Symptoms, Functioning, and
Interventions Within Orem's Framework . . . . . . . . . 11

Figure 3: The Relationship Between Symptom Count
and Symptom Severity on Functional Ability . . . . . . . 12

Figure 4: Results of the Study Within Orem's Conceptual
Framework . . . . . . . . . . . . . . . . . . . . . . . 50

viii

INTRODUCTION

Colorectal cancer is the third most common cancer
occurring in men and women in the United States and the
second leading cause of cancer mortality (Sigurdson, 1995;
Sinicrope & Sugarman, 1995). Forty percent of the patients
diagnosed with colorectal cancer have distant metastatic
disease at the time of presentation (Sigurdson, 1995), and
although approximately 80% of patients with colorectal
cancer are potentially curable by surgery at presentation,
half will eventually die of the disease (Sinicrope &
Sugarman, 1995). Cancer is a disease that presents itself
in people of all ages. However colorectal cancer
specifically targets the elderly, occurring in men and women
in equal numbers. The limited information available
investigating colorectal cancer is well documented in terms
of pathophysiology and is one of the most studied types of
cancer in terms of both genetic and environmental risk
factors (Slattery, Mori, Gao, Stat, & Kerber, 1995), however
little has been written to describe the human experience of
this type of cancer.

Experts predict that by the year 2030, one out of five
Americans will be over 65 years of age (U.S. Bureau of the

Census, Current Population Reports, 1984). The growing

1

2
population of the elderly, the prevalence of colorectal
cancer among this population of both genders, and the
mortality risk factors associated with colorectal cancer
demonstrates the need to obtain greater knowledge of this
disease. The hereditary, lifestyle, and environmental, risk
factors associated with developing colorectal cancer are all
documented within the literature. The missing piece of
information is what occurs after the disease has presented
itself. How does this particular type of cancer manifest
itself within this population that is already vulnerable to
concomitant disease? The information that encompasses the
human experience of colorectal cancer is what is missing
from the current body of knowledge. The purpose of this
study is to describe the symptoms of colorectal cancer in
patients 65 years of age and older, and how these symptoms
affect their daily functional abilities.

Although the needs of a patient vary depending on the
cancer site, the stage of the disease progression, the phase
and aggressiveness of treatment options, and the treatment's
resulting physical implications, during periods of acute
exacerbation symptom management and control are of paramount
importance. This avenue of inquiry can provide essential
information that can assist health professionals to
anticipate interventions that can help optimize patients'
health and their ability to carry out daily activities. An
understanding of the symptomatology of cancer and how it

affects the patient's ability to continue to carry out their

3
daily activities during their cancer treatment is paramount
in providing comprehensive care for these patients, both in
the hospital and at home.

Within the past few years, treatment regimens for
people with cancer have shifted from in-hospital settings,
being directed and supervised by health care professionals,
to outpatient care, leaving day to day supervision of the
patient to the primary family caregivers, and to the ill
patient. The lack of information available regarding
symptomatology of colorectal cancer and the resulting effect
on the patient's ability to perform self care activities,
leaves primary caregivers without the proper knowledge or
preparation to care for their loved ones.

Currently, much of the care of cancer patients is
taking place in the home, which demands knowledge of not
only what to do to prevent and/or manage symptom experience,
but also what needs to be reported to the health care
provider. Hickey (1988) looked at the factual reporting of
symptom complaints and found that older patients tend to
underreport their symptoms when seeing their physicians.
Given and Given (1994) discussed the burden placed on the
patients and caregivers in monitoring symptoms and sequela,
following treatment goals, transportation to appointments
and administering medications. The concurrent presence of
multiple symptoms such as fatigue, pain, and nausea can
overwhelm patients and caregivers, causing feelings of

helplessness and anxiety for all involved. These feelings

4

are compounded as the patient and loved ones are cast into

the role of health care provider in assessing patient

complications or reactions to treatments as health care
consumers take on the responsibility of monitoring symptoms
or the side effects to treatment in the home setting.

This line of inquiry will carry needed knowledge to
many areas of health care as the management of symptoms and
assessment of needs after discharge is not limited to the
nursing profession. A collaborative effort by a
multidisciplinary team involving nurses, physicians, social
workers, hospice care, and others, will benefit greatly from
the outcome of this line of inquiry as a comprehensive
proactive plan of care is developed for these cancer
patients. Quality of life during disease exacerbation will
be the optimal patient outcome that drives the following
questions of inquiry for this research study:

1. What are the symptoms, in number and severity,
experienced by colorectal cancer patients, age 65 years
and older, at the time of treatment initiation?

2. How do the number and severity of symptoms experienced
by colorectal cancer patients affect their functional
abilities when analyzed by age and previous functioning
ability?

Theoretical Framework

The number and severity of symptoms experienced during

colorectal cancer and its treatment and the symptoms' effect

on a patient's functional ability will have a direct impact

5
on the patient's ability to maintain their own self-care.
The concerns addressed in this study are clinically relevant
to Dorothea Orem's Self-Care Deficit Theory of Nursing (8-
CDTN). Orem's theory of nursing is a conceptual model
comprised of three interrelated theories, the theory of
nursing subsumes, the theory of self-care deficit which
subsumes the theory of self-care (see Figure 1).

Orem's general theory focuses on the patient's ability
to care for him/herself and the role of the nurse in
assisting the patient in any identified areas of deficit in
self-care. Orem's theory has proven to be versatile in
nursing, providing a framework clinicians can use to develop
specific plans of care by using one or all of the
interrelated theories in the care of their patients. Orem's
theory of nursing is relevant to all aspects of this line of
inquiry, however the exploration of the relationship between
patient symptoms and functional abilities is the realm of
the self-care theory for this study.

The theory of self-care defines the concept of self-
care as “the performance of practice of activities that
individuals initiate and perform on their own behalf in
maintaining life, health, and well-being’ (Orem, 1991,
p.117). The patient's ability or power to engage in self-
care is defined as self-care agency, which develops from
childhood, reaches maturity in adulthood, and declines with

old age (Orem, 1991). In addressing self-care, Orem does

 

 

 

Theory of
3160}? Of Self—care Theory of
1113108 Deficit Self-care

 

 

 

 

 

 

 

Him. Constituent theories, the Self-Care Deficit Theory of Nursing.

adhere to the presupposition that self-care actions may vary
by the cultural and social experiences of each individual.
This acknowledges that self-care may not be initiated by
even a healthy individual if learned helplessness is part of
a person's cultural or personal characteristics, or an
individual may insist on maintaining independence despite
functional deficits for the same reasons. Noting the
importance of assessing the client within the context of
their own culture and health beliefs is a strength of this
theory.

The relationship between experienced symptoms and the
resulting effect on a patient's functional status can best
be seen by examining the theory of self-care. Individuals

have ideas of what health means, at least to them

7
personally. Self-care is only one aspect of healthful
living, but without continuous self-care that has a
therapeutic quality, integrated human functioning will be
disrupted. In the absence of illness, adults voluntarily
care for themselves. However, “infants, children, the aged,
the ill, and the disabled require complete care or
assistance with self-care activities (Orem, 1991, p. 117).
The population addressed in this study are all elderly
patients, requiring regular assessment of their self-care
abilities, even within the context of health maintenance.
The symptoms experienced and potential functional
alterations will have a direct impact on a patient's ability
to maintain their self-care status. In the presence of a
debilitating illness such as colorectal cancer, and the
treatments that accompany this disease, Orem's theory of
self-care provides a first step in the assessment process to
determine when and how nursing care is needed.

The theory of self-care deficit evolved from the
concept that individuals are affected from time to time by
limitations that do not allow them to meet their self-care
needs. These limitations in meeting self-care needs result
in a self-care deficit. When a deficit is identified,
through patient reports or the assessment process, nursing
is required to assist the patient in achieving their self-
care needs. The need for assistance may be long-term such
as patient's with complete spinal cord injuries, or it may

be for a short time, for example recovering from surgery or

8
during periods of acute illness with adjunctive therapy in
the treatment of cancer. Identification of self-care
deficits is considered the core of Orem's general theory
because it indicates that when an adult is incapable of, or
limited in, the provision of continuous effective self—care,
nursing is needed to assist the patient in their self-care
demands. This assistance will continue until the patient
has the ability and strength to utilize his/her own self-
care agency and achieve independent self-care.

The theory of nursing systems describes all
interactions taken by the nurse to assist the patient during
their self-care deficit, and the actions taken to assist the
patient in regaining their own self-care abilities. Orem
further delineates self—care deficit as the need for nursing
to physically assist in a wholly compensatory or partly
compensatory capacity, depending on the extent of a
patient's needs. Orem's theory identifies the supportive
assistance provided through the personal relationship
between the nurse and the patient/caregiver dyad and also
through referrals to other members of the interdisciplinary
team that may provide needed resources. In this supportive
capacity, the nurse provides the education needed in
anticipatory guidance regarding what to expect through the
course of their cancer treatment and how to manage the
effects of treatment at home. Supportive assistance is
provided through the personal relationship between the nurse

and the patient/caregiver dyad and also through referrals to

9
other members of the interdisciplinary team that may provide
needed resources. Orem's inclusion of the educational and
supportive role of nurses as a component in nursing care
emphasizes the importance of the nurse's role as a vehicle
to empower patients and assist in promoting their ability to
continue their own self-care. This illustrates the long-
term assistance in providing care to patients with
colorectal cancer and not just the self-limiting short-term
physical care needed during acute exacerbation of symptoms
and altered functioning.

Within this theory, maintenance or re-establishment of
self-care is the goal of nursing interventions. Self-care.
can be identified as the pre-cancer baseline of the patients
within this research population, or the optimal capacity
that the patient is able to provide their own self-care,
with the nurse or caregiver providing assistance as needed.
The type, number, and severity of symptoms experienced, and
the resulting impact on functional status will be the
greatest determinant as to whether the patient will be able
to maintain their pre-cancer baseline or if a self-care
deficit results from the physical implications of colorectal
cancer.

Nursing interventions occur throughout the diagnosis,
treatment, and recovery phases of colorectal cancer. At
diagnosis, education begins regarding the meaning of the
diagnosis, treatment options, and anticipatory information

on what to expect in the immediate weeks after diagnosis.

10
Nursing interventions continue during the initiation of
treatment for colorectal cancer, as symptom distress begins.
As patient and caregiver needs are continually assessed,
anticipatory symptom management and education in the home
management of symptoms occurs to assist the patient and
caregiver to actively participate in the prevention of
developing a self-care deficit.

If a self-care deficit develops as a result of symptom
distress and functional disability, nursing interventions
are focused on physically assisting patients in achieving
their self-care needs and referring patients and caregivers
to the needed resources to help obtain these goals once home
from the hospital. Since the cancer does have periods of
quiescence and exacerbation, this assistance may be short-
term. However, the goal of nursing interventions within
this framework is to assist the patient and caregiver to
proactively decrease the number of symptoms, improve
functional abilities, and achieve their optimal personal
self-care status (see Figure 2).

The purpose of this study is to examine if the number
and severity of symptoms impact a patient's functional
ability. Examining these variables within Orem's theory of
self-care, symptom count is defined as the number of
symptoms a patient experiences after the initiation of
cancer treatment. Symptom severity is defined as the
patient's subjective rating as to the quality of their

symptoms. A patient's functional ability will be defined as

11

 
  

  
   
     
     
 

Factors

 

Affecting Self
Care: Age, ' Preventive Nursing
Symptoms, Self -Care Interventions
Functioning, Deficits

 

TnmUmnn

 

N

Self-Care Deficit

W- Expressing symptoms, functioning, and interventions within Orem's
flmnwmmde

their ability to carry out activities of daily living (ADL),
instrumental activities of daily living (IADL, and mobility
(see Figure 3).
Review of Literature
The review of literature addressing symptomatology

resulting from cancer and its treatment, and how it relates
to a patient's functional ability will examine previous work
completed in this field. It should be noted that the amount

of empirical work available addressing this focus of study

is limited. Analysis of the literature will be incorporated

12

Symptom
Severity

 

Instrumental
Activities of Mobility
Daily Living

Activities of
Daily Living

 

Eign:e_1: The relationship between symptom count and symptom
severity on functional ability.
within this section of the review of literature, along with
recommendations for the needed direction of future study.
Colorectal cancer is a disease that targets the elderly
population. Research by Mor, Wilcox, Rakowski, and Hiris
(1994), examined the functional abilities and the changes in
these abilities that occur over time, and the changes that
occur after a severe disability in people 55 years of age
and older. Their study found that a return to independent
functioning following a severe disability did occur for some
of the elderly of all ages, however this was more rare among

people 80 years old and older. The researchers' study

13
showed that age influences the course of disability and the
likelihood of death, even for people with similar baseline
functioning (Mor et al., 1994). This finding supports
research results from the Framington Disability Study (Jette
& Branch, 1981), which found a consistent increase in
physical disability with advancing age. These researchers
pointed out, however, that the magnitude of disability is
not as great as society believes. The results of both of
these studies illustrates that age should be considered as a
covariable in any study involving the elderly. Further data
analysis by Mar and colleagues (1994) illustrates that an
emergence of a new disability in previously independent
elderly people leads to an increase in hospitalization.
This finding indicates that it is fiscally beneficial to
actively promote the recovery of a patient's functional
status to decrease hospitalization costs.

Current literature indicates that the presenting
symptoms of colorectal cancer vary depending on the tumor
site. The most common symptoms alerting the clinician to a
potential diagnosis of colorectal cancer include a change in
bowel habits, paradoxical diarrhea, and changes in the stool
(Steele, 1995). Other symptoms that patients experience may
alert the clinician to the location of the tumor along the
bowel or rectum. Weakness, secondary to anemia, is the
symptom most commonly associated with a tumor of the right
colon. Pain associated with a tumor in the right colon is

ill defined, a tumor in the left colon presents pain that is

l4
often described as colicky, and a steady gnawing pain is
indicative of a tumor in the rectum. Later stage tumors
that have infiltrated into an around the lymphatic region
present a feeling of an urgent need to defecate or urinate.
Straining occurs with this effort, but evacuation remains
unsuccessful.

Once a diagnosis of cancer has been confirmed, the
patient may then choose a treatment intervention for their
cancer which could include surgery, chemotherapy, radiation
therapy, or any combination of these. The symptoms present
which lead to the diagnosis of cancer may be exacerbated or
compounded by other symptoms that may result from the chosen
method of intervention.

Addressing symptoms experienced by patients undergoing
chemotherapy encompasses the systemic side effects that may
result from the treatment of the cancer, whereas symptoms
resulting from radiation therapy or surgery will be more
site specific depending on the anatomical area of cancer.
Love, Leventhal, Easterling and Nerenz (1989) examined the
effects of various forms of chemotherapy in the treatment of
breast cancer or malignant melanoma. These researchers
followed their participants through the first six cycles of
chemotherapy, finding the side effects most frequently
reported to be hair loss, nausea, and tiredness. These
symptoms were reported by 80% of the patients at some time
during their treatment intervention. In addition, vomiting,

sleep disturbance, weight gain, mouth sores, and numbness

15
and tingling were experienced by more than 40% of their
sample.

Research by Denaus, Van Knippenberg and Neijt (1990)
examined two groups of patients: 1) female cancer patients,
type of cancer unspecified, visiting an outpatient clinic
for chemotherapy or follow-up; and 2) patients participating
in a randomized trial comparing two chemotherapy regiments
for advanced ovarian cancer, finding pain, fatigue, and
gastrointestinal complaints to be significant complaints
among their population. DeHaus and colleagues (1990)
support the previous finding of Love and colleagues (1989),
revealing the systematic nature of the symptoms experienced
as a result of chemotherapy.

When surgery is used as a treatment option, the site
specific symptoms experienced are distinctive in terms of
nonstoma and stoma patients, and whether or not the
sphincter remains intact after surgery. Patients with and
without stomas were found to suffer from flatus, or gas in
varying degrees (Sprangers, Taal, Aaronson & Velde, 1995).
Stoma patients without intact sphincters report more
problems with gas and urinary function, whereas patients
with intact sphincters report more constipation.

Love and colleagues (1989) not only examined the
symptoms experienced among their sample of patients with
breast cancer or malignant melanoma, but also the frequency
of symptom occurrence over a six month period of time. They

found that the patient's symptoms would fluctuate in

16
occurrence over the six month time frame of their study.
The symptoms reported by patients in the study may occur,
resolve, and reoccur within the course of their treatment,
causing the patients to fluctuate between periods of acute
distress and symptom quiescence.

The previous research work alerts all health
professionals to the need for continual assessment of the
patient's cancer experience and the uniqueness of treatment
for each individual. These studies by Love and colleagues
(1989), Denaus and colleagues (1990), and Sprangers and
colleagues (1995), explored the variety of symptoms that may
occur resulting from the various treatment options in
adjunctive therapies for cancer. Their work has provided
valuable information directed toward increasing knowledge
regarding the patient's personal experience of cancer and
the need for professional attention to the development and
utilization of preventative treatments or timely
interventions in regard to symptom management.

The phenomenon of fluctuating symptoms which is
described in the study by Love and colleagues (1989) can
also be mirrored in the fluctuations seen in the limitation
of physical functioning during treatment of cancer.
Vinokur, Threatt, Vinokur-Kaplan and Satariano (1990)
examined women with breast cancer and tracked their physical
functioning over a ten month period of time. Their study
showed that limitations in functioning do exist after

treatment initiation, however these limitations improved

17
over the course of the study. Results of their study also
found that more extensive surgery is related to a more
serious risk factor for reduced physical functioning and
health among older patients, as compared to younger
patients. Despite the good prognosis for marked improvement
in physical functioning within the first year of diagnosis,
these researchers found that full recovery in terms of
mental health and well-being is a much more prolonged
process. Vinokur and colleagues (1990) also identified that
women over sixty years of age require greater assistance in
overcoming difficulties in physical functioning, as compared
to younger patients. Assuming generalizability to elderly
patients with colorectal cancer, this research has
identified the greater incidence of this population, aged 65
years and older, acquiring limitation in physical
functioning as a result of cancer treatment, especially if
extensive surgery is required.

The symptoms that patients experience do not occur as
an isolated phenomenon. It can be hypothesized that the
symptoms that patients experience will affect other areas of
a patient's health. Analysis of the correlation between
pain and limited functional ability was conducted by
Portenoy, Miransky, Thaler, Hornung, Blanchi, Cigas-Kong,
Feldhamer, Lewis, Matamoros, Sugar, Olivieri, Kemeny, and
Foley (1992), looking specifically at patients with lung or
colon cancer. Although there was no significant difference

between these two populations with cancer, they found that

18
over half of their patients perceived pain to interfere with
general activities or work related activities to a moderate
or great degree. Specifically, more than half of their
patients reported a moderate or greater interference in
sleep, mood, and enjoyment in life, and a smaller proportion
stated that walking and social relations were at least
moderately affected by pain.

Although this is the first study that identified
colorectal patients as a large part of their sample, and
isolated chemotherapy and its effects on patients'
functional abilities, the time frame of the inquiry was a
mere two weeks prior to the interview. However, generated
information has been vital to this author's line of inquiry.
It provides the stepping stone to an increased knowledge
base of colorectal cancer specifically and has first
addressed the relationship between symptoms and how they
affect a patient's activities. This research also directs
the need for future research to continue examining the
influences of the symptoms of pain on functional abilities
over a longer period of time.

The need to explore the correlation between the
symptoms experienced and how they impact a patient's
functional ability was first addressed by Daut and Cleeland
(1982). These researchers interviewed patients with breast,
colon, prostate, and various gynecological sites of cancer
and found that the patient's perceived cause of pain,

whether from the cancer, it's treatment, or from other

19
unrelated factors, did influence the patient's perceived
interference with activity and interference in their
enjoyment in life. They also concluded that the perception
of interference with activity and enjoyment of life was
greatest when the patient's perceived their pain to be
related to their cancer disease, as opposed to treatments or
other factors. It is noted that pain is the only symptom
analyzed, and evaluation of how it affects functioning is
limited to the time at diagnosis and the month prior to the
interview. This limits the ability to add to the knowledge
of the long term effects of symptoms from cancer on the
patients, however it did provide the beginning framework to
examine this focus of study to a greater extent.

The need for continuing this line of inquiry to include
more symptoms and examine the effects of these symptoms over
a longer period of time was addressed in a longitudinal
research study conducted by Kurtz, Given, Kurtz, and Given
(1993). In this study, these researchers followed patients,
20 years of age and older, diagnosed with a solid tumor, for
6 months to determine the most commonly experienced symptoms
they were experiencing and if the presence of symptoms could
predict a loss in physical functioning. These researchers
found the most frequently occurring symptoms in this
population to be fatigue, pain, insomnia, nausea, and poor
appetite, occurring throughout the six month study. Kurtz
and colleagues found that the symptoms that patients

experience was the most effective predictor of loss of

20
physical functioning. Further analysis reveals which
symptoms in particular were predictors for loss of physical
functioning in each of their cancer groups: weight loss and
pain were significant predictors for breast cancer, poor
appetite was a significant predictor for lung and
colorectal[gastrointestinal cancer, weight loss and insomnia
were significant predictors for lymphoma, and pain was a
significant predictor for other cancers (Kurtz et al.,
1993). This research work was the first to explore multiple
symptoms and their impact on functional ability, leading to
an increased understanding of the sequela of cancer
treatment.

Kurtz and colleagues (1994) reported on the same
population after one year of participation in their study
examining the symptomatology of cancer and its relationship
to the effects of altering patients' functional abilities.
These researchers found that most frequently occurring
symptoms reported throughout their cancer treatment were
pain, nausea poor appetite, and constipation. However,
fatigue was the most prevalent symptom for all ages during
the treatment of their cancer. 'Through this analysis, a
positive correlation was found between a patient's symptoms
and the patient's functional status, revealing that symptoms
proved to be the only significant predictor of dependencies
in activities of daily living (ADL). This study also
illustrated that a patient's age is positively correlated

with patient immobility. Results from the study showing the

21
impact of age alone on a patient's health continued their
previous work (Kurtz et al., 1993) examining the impact of
age on physical ability throughout an entire year of cancer
survival. 'The information generated from this study will
assist health care providers to direct care to proactively
prevent and/or treat the most frequently occurring symptoms
experienced. This study further underlines the importance
of managing the symptoms experienced during cancer
treatment, as symptoms were shown to be a strong predictor
of dependencies in ADLs.

Mor, Masterson-Allen, Houts and Siegel (1992) examined
previous research work regarding symptoms and their effect
on limitation of functioning, and included in their research
design an evaluation of the patient's need for assistance
and if those needs were being met. Mor and colleagues
interviewed patients at baseline and once between three to
six months after the initial contact for a follow-up
interview. They found that a need for assistance with
personal care and/or home health tasks rose from 7% at
baseline to 16% at follow-up. Cumulatively, 60% of patients
needed assistance with instrumental tasks, at baseline
and/or follow-up. These researchers also found that
selected medical and treatment variables were related to
developing new needs. Those patients older than 65 years
were 1.3 times more likely to have needs in personal
assistance and patients with metastatic disease were

significantly more likely to have acquired a new need in all

22
areas. Having pain and nausea at the follow-up interview or
reporting spending one or more days in bed in the two weeks
before the follow-up interview indicated that a patient was
at a higher risk for acquiring new assistance needs. The
prevalence of unmet needs in instrumental tasks declined
over the course of the study, with the cumulative
probability of the unmet need at 18%. The prevalence of
unmet needs in personal care was low at baseline (2%),
however it did double over the course of the study and
represents over one-third (37%) of those who reported
needing help (Mor et al., 1992).

Research by Houts, Yasko, Harvey, Kahn, Hartz, Hermann,
Schelzel and Bartholomew (1988), also examined the unmet
needs of persons with cancer, focusing on the period of time
during terminal care. These researchers found that needs
related to activities of daily living were almost three
times as frequent in the terminal period as in the period
just after diagnosis, estimating that 42% of the sample
needed additional help in this area. Physical unmet needs,
such as symptom management, were estimated at 22% of the
patients in their sample. Results from their study showed
significantly higher rates of unmet needs during the
terminal period for activities of daily living, health care,
problems with medical staff, and transportation.

The data generated from these two research studies by
Mor and colleagues (1992) and Houts and colleagues (1988)

indicate the necessity for investigating the many unmet

23
needs of their cancer populations. Reported unmet needs are
not only apparent for symptom management and functional
maintenance, but the unmet needs in regards to interacting
with health professionals and the apparent lack of advocacy
occurring for these patients. These two studies have shown
that any knowledge gained regarding the symptoms of cancer,
their affects on functioning, and the needs of the elderly
for assistance to carry out their functioning, is useless if
it is not utilized in every day clinical practice. These
researchers have identified that there are many needs of
patients that are not being met and should alert the
profession of nursing to the necessity of not only gaining.
the knowledge through empirical research, but also to
utilize this information to proactively assist patients
through their cancer experience.

As stated previously, research including patients with
colorectal cancer is limited to a few studies (Kurtz et al.,
1993; Kurtz et al., 1994, Love et al., 1989; Portenoy,
1992). Strengths of previous research on symptoms of cancer
and functional abilities were evaluated including using
standardized tests with known validity and reliability or
the research involved a synthesis of previous works of the
same focus of study. The use of standardized tests bring a
greater validity and replicability to this line of inquiry.
The natural progression of research inquiry was seen as
Kurtz et al. (1993), Kurtz et al. (1994), and Love et al.

(1989) addressed the multiple symptoms experienced by

24
patients, as compared to Portenoy's (1992)focused analysis
of pain. The need for longitudinal data was identified and
accomplished in research conducted by Love et a1. (1989) and
Kurtz et al. (1994), with their studies following patients
for a period of six months and one year respectively.
Methodologically, these previous research designs are strong
and have provided direction for the need for future studies
to follow patients for a period of time of at least one year
to assess the long term effects of symptoms and functioning,
whether these variables continue, resolve, and/or have
periods of exacerbation that continue for greater than six
months.

This researcher's line of inquiry will examine the
symptoms, in number and severity, experienced by patients
with colorectal cancer and how these symptoms affect their
functional ability. This analysis will be focused on the
time after diagnosis, within six weeks after surgery or
within ten days of beginning treatment. The reasons for
this are three-fold: 1) As mentioned earlier, research
specifically targeting colorectal cancer is limited. This
author's research will replicate what has been done using
only colorectal cancer patients; 2) Symptoms and their
influence on physical functioning with colorectal cancer
patients are greatest at the beginning of their diagnosis
and treatment phase and during the terminal phase as well.
Identification of symptoms is an essential piece of

knowledge that will guide the nursing profession regarding

25
the patient.education that is needed and professional
nursing interventions required for symptom management at
home or in the hospital; and 3) Past research shows that
symptoms of cancer are predictors of loss of functional
abilities. Results from this study will increase the health
care profession's knowledge regarding the symptoms
experienced among colorectal cancer patients and assist in
the guidance of preventive treatment needed for the most
frequently occurring symptoms, and identify the patients who
may require referrals to assistive agencies if a functional
disability occurs as a result of overwhelming symptoms
experienced.
Methods

To accomplish the goal of obtaining a greater
understanding of the experience of colorectal cancer, it is
necessary to utilize previous research works in the field
which use colorectal_cancer patients in their populations
and continue to develop new research that examines the
colorectal population specifically. The purpose of this
study is to determine the symptoms, in type, number, and
severity, experienced among patients with colorectal cancer
and analyze how the number and severity of symptoms affect
these patients' functional ability.

The participants for this study will be obtained from
the original study's data base, consisting of 117 patients
diagnosed with a new incidence of colorectal cancer.

Eligibility criteria for this study include: 1) Participants

26
were 65 years of age or older; 2) Participants must have an
intervention for their cancer, either surgical,
chemotherapy, radiation therapy, or any combination of
these; 3) Participants must be English speaking; and 4)
Participants had access to a phone. Patients with comorbid
conditions were not excluded from the study. The particular
state of the cancer or presence of metastases was not a
criteria for eligibility or participation in the study.

The parent study utilized a nonprobability convenience
sample. The selection of the 117 participants for this
study occurred through convenience sampling from the parent
study's data base of patients who fit the above criteria.
Recruitment of cancer patients occurred during the patient's
hospital stay or in the physician's offices during
adjunctive therapy through six community-based cancer
treatment centers located in lower Michigan.

The parent study utilizes a structured interview
conducted by trained data collectors at the time of the
participants' uptake into the study, followed by interviews
at 6, 12, and 52 weeks. Each interview occurred over the
phone, taking 45-60 minutes to complete. Information
gathered for this researcher's study were only the portions
of the interviews that are specific to this stated line of
inquiry, which included interview items containing Likert
scale questions addressing symptoms, activities of daily
living, instrumental activities of daily living, and
mobility. I

27
i l' J E E' 'l'

Definitions for the variables addressed in this study
will follow: '

Age was defined as the number of chronological years
that a person has lived.

Stage§_gf_gangez was defined as the classification of
the tumor of the colon based on the size and extent of the
primary tumor (T), nodal involvement (N), and distant
metastasis (M). Staging of tumors ranged from 0 to IV. The
TNM classification was defined as follows (Steele, 1995):
Stage 0: carcinoma in situ (Tis, N0, M0); Stage I: tumor
invades submucosa (T1, N0, M0) and tumor invading muscularis
propria (T2, N0, M0); Stage II: tumor invades through
muscularis propria into the subserosa, or into
nonoperationalized pericolic or perirectal tissues (T3, N0,
M0) and tumors that directly invade other organs or
structures and/or perforates the visceral peritoneum (T4,
N0, M0); Stage III: any degree of bowel wall invasion with
regional node metastasis but without distant metastasis (any
T, N1, M0); Stage IV: any degree of bowel wall invasion with
or without regional lymph node metastasis but with evidence
of distant metastasis (any T, any N, M1).

I;gatm§nt_gf_ganggr was defined as the method of
intervention chosen for curative and/or palliative reasons.
Treatments included any or all of the following: surgery,

chemotherapy, or radiation therapy.

28

symptom was defined as the somatic physical
manifestations occurring at the time of cancer diagnosis and
at any time after treatment initiation.

Symptgm_ggnnt was defined as the total number of
symptoms that each patient experienced at the time of the
interview.

symptgm_seygzity was defined as the subjective rating
of the quality of each symptom complaint.

Enngtignal_ahilities was defined as the patient's
physical ability to carry out every day tasks. A patient's
functional ability was divided into three categories: 1)
activities of daily living (ADL) which included dressing,
eating, bathing, walking, toileting and transferring in and
out of bed; 2) instrumental activities of daily living
(IADL) which included a patient's ability to do laundry,
shopping, housework, cooking and preparing meals, and
independently drive him/herself; and 3) mobility which
included a patient's ability to perform moderate to vigorous
activities, lifting and carrying groceries, climbing one to
several flights of stairs, bending/kneeling/stooping,
walking one block to over a mile and bathing/dressing
him/herself.

Instrumentation

Symptoms were defined as the subjective manifestations
of cancer and its treatment as measured by the Given and
Given Symptom Distress Scale (Given & Given, 1991). This

symptom distress scale is comprised of a list of 37 symptoms

29

such as nausea, poor appetite, fatigue, insomnia, and
diarrhea. Each patient was presented with a symptom (such
as nausea) and asked if he/she had experienced this symptom
within the previous two weeks. If the patient answered
‘yes"bo any symptom, they were then asked the severity of
the symptom on a three-point scale ranging from mild to
severe (1-3). The most severe rating was scored as three
and the least severe scored as one. These questions
explored the participant's symptoms that they had
experienced in recent weeks and the quality of the symptoms
complaints. The item-total correlations are high and the
coefficient alphas are all above .90 (Given & Given, 1991).

£nngtigna1_abilities measurement was accomplished
through the use of the Medical Outcomes Studies (MOS)
Physical Functioning Scale (Ware & Sherbourne, 1992). This
tool measured how the patient's cancer, or the side effects
of its treatment, may have interfered with any of the
following: 1) activities of daily living: tasks such as
eating, bathing, dressing, toileting, walking inside the
house, and transferring in and out of bed; 2) instrumental
activities of daily living: tasks such as laundry, cooking,
housework, shopping and transportation; and 3) mobility:
ability to lift or carry groceries, participate in moderate
to vigorous activities, climb one to several flights of
stairs, and walk one block to more than a mile.

Assessing activities of daily living and instrumental

activities of daily living, using the MOS, was done using a

30

five-point scale (1-5). The patient, or their caregiver,
was asked about each ADL and IADL task and whether the
patient is independent or needed assistance, such as .
supervision only, partial assistance, or total assistance.
The items were then further evaluated as to if the
assistance needed was due to cancer, other health problems,
or if someone else has always performed this activity for
them, which indicated that assistance needed may be related
to health problems present before the diagnosis of cancer or
related to established roles within the household. Further
evaluation as to the potential etiology for the needed
assistance helped to clarify the difference between ADL and
IADL dependence ability and capability by capturing roles
within the household as part of the measure. Mobility was
assessed using a three-point scale, determining if patients
felt that their health currently limited them in
participating in any mobility tasks, with Likert scale
answers ranging from “not limited at all” to “limits me a
lot" (1-3). These questions determine the patient's
perception regarding any limitations in mobility. These
subscales of the MOS-36 have corrected item-total
correlations above .60 to .62 respectively, and coefficient
alpha of .85 and .84 respectively (Given & Given, 1991).

T:eatment_gfi_gancer was defined as one or any
combination of the following interventions for either
curative or palliative measures: 1) surgery; 2)

chemotherapy; 3) radiation therapy; and 4) any combination

31

of these therapies. This information is gathered from
hospital records and verified by patients at the time of
their signing consent to participate in the study.

Stagg§_gfi_ganggz was defined as the cancer
developmental state, such as a tumor confined to its place
of origin or any stage extending to, and including, an
advanced stage of tumor which has metastasized to various
parts of the body. The stages of cancer were classified as
I, II, III, or IV utilizing the TNM classification system
(Steele, 1995).

Research Design

The original study collected data using a longitudinal
descriptive-comparative research design. The Principal
Investigators examined how age, comorbid conditions, the
site and extent of prostate, breast, colorectal, or lung
cancer, and the aggressiveness of treatment for the cancer,
their impact on patient's functional and mental states, and
the requirement of formal and informal care and its impact
upon family caregivers. Data continues to be collected for
the parent study. Each participant is being followed over a
period of One year, the first interview occurring after the
initial intervention for the patient's cancer, with follow-
up interviews occurring at 6, 12 and 52 weeks (waves I, II,
III, and IV, respectively). Drs. Barbara and C.W. Given are
the Principal Investigators of the parent research study
entitled the Family Home Care Study for Cancer--A Community-

Based Model, grant #R01-NR01915, funded by the National

32
Institute for Nursing Research and the National Cancer
Institute. .

This researcher is doing a secondary analysis of the
original data that was collected in the field, with the
scope of inquiry limited to colorectal cancer patients only.
Information collected at the participants' uptake into the
study was the focus of interest for this researcher. This
secondary analysis was a Level II nonexperimental cross
sectional descriptive study design examining Wave I data,
which is the first interview that occurred after the initial
treatment intervention for the participant's cancer.“

Data Analysis

The inquiry specified in Question #1 was analyzed using
descriptive statistics. This accomplished the objective of
reporting the symptoms, the type, number, and severity,
experienced among patients with colorectal cancer. Further
analysis of the data explored the total number of symptoms
each patient experienced and the patient's perception of the
severity of each of their symptoms. -

Regression analysis is utilized for Question #2 to
examine the causal relationship between the patient's number
and severity of symptoms and the affect of these symptoms on
a patient's functional ability after the initiation of
treatment. This level of analysis was utilized to determine
if there is a direct cause and effect relationship between
the number and severity of symptoms and their impact on

functional ability. The patient's age and current mobility

33

were controlled for in the regression analysis of ADL and
IADL due to literature stating that both age and mobility
individually contribute to impact functioning (Mor et al.,
1994; Vonkur et al., 1990) and to specifically isolate the
impact of symptom count and severity on ADLs and IADLs. The
patient's age was controlled in the regression analysis for
mobility for the reason stated previously. Current mobility
will not be controlled for in the analysis due to the
perfect correlation between mobility and current mobility.

The total possible score for self-care and instrumental
activities is forty-four, scoring for responses as to
whether the patient is independent, needs some physical
help, needs total physical help, or has never done the
activity before (one, two, three, and four respectively).
The total score is calculated as the sum of the scores for
the questions in these two categories. The maximum score
for self-care is 24, while the maximum score for IADLS is
20. Mobility has a total possible score of 27, which is the
sum of the scores for the nine questions in this category.
The possible scores are one, coded for'tnot limited at all",
two for “limited a little',land three for “limited a lot".

Protection of Human Subjects

Research participants for this secondary analysis have
already been recruited and interviewed for the parent study.
When being approached for participation in the parent study,
the patient/caregiver dyads were informed of the purpose and

procedures of the study, such as the interview format and

34
the number of interviews that were required for completion
of one year of participation. If the dyads chose to
participate, they signed an Institutional Review Board
approved consent form.

There are no identified risks to the patient/caregiver
dyads in the original study, which also remains true for
this secondary analysis. Confidentiality was ensured by the
use of participants' name on the pre-enrollment and paradox
form only. These forms provide the names and addresses of
participants so the trained interviewers were able to call
and arrange appointments to conduct the interviews for the
data collection. All other documentation utilized for data
analysis was restricted to the use of case numbers only,
which were assigned to each dyad on their pre-enrollment
form. Trained interviewers have access only to the files
containing the pre-enrollment form, paradox form and field
notes indicating previous interviews that had been
completed.

For the purpose of this secondary analysis, this author
has obtained approval for this study from the University
Committee on Research Involving Human Subjects at Michigan
State University.

Limitation of the Study Design

The sample size is small for the number of variables
related to symptoms and functioning which prevents
generalizability to all patients with colorectal cancer. A

second limitation of this study was the requirement for

35
participants to be English speaking and have access to a
phone. This hinders an unbiased racial and ethnic mix
within the study and potential socioeconomic considerations
of the data from the population obtained. The absence of a
mental cognition component in the questions may leave a
reader to question the mental competence of this elderly
population undergoing acute health changes. Cancer staging
information from chart audits for each patient participating
in this study was not available. This lack of information
prevents further analysis corresponding symptom and
functioning to any particular stage of cancer.

Another limitation of the study is the time required
(45-60 minutes) for the interview to take place. The known
health implications of undergoing chemotherapy and/or
radiation therapy interventions for cancer permit only the
healthiest of all cancer patients to participate in the
study, as fatigue and symptoms addressed within the study
might have prevented a patient's consent for participation.
Instrumentation limitations included the overlapping of the
evaluation of walking within both of the ADL and mobility
scales. Measuring walking with two scales reduces the
purity of the results.

RESULTS
WWW

Analysis of the data generated examined the type,

number, and severity of symptoms experienced among

colorectal cancer patients, and how the number and severity

36
of these symptoms affected the patients' functional ability.
The sample consistedof 117 patients with a new diagnosis of
colorectal Cancer who had recently begun treatment for their
cancer. The sample was split almost evenly by gender, 56
males (47.9%) and 61 females (52.1%), with a mean age of
72.4 years (SD-6.1). The distribution of the staging of the
cancer for these patients ranged from I-IV, showing 12.8%
(n-15) diagnosed with Stage I, 19.7% (n=20) with Stage II,
17.1% (n=20) with Stage III, and 8.5% (n=10) with Stage IV
(information was missing on 41.9%, n=52). Almost eighty-
fiver percent (n=99) of the patients had undergone surgery
for treatment of their cancer. Sixty-three percent (n-74)
of the patients had begun adjunctive therapy (chemotherapy
or radiation therapy), and twenty-seven percent (n=32) were
scheduled to begin adjunctive therapy in the near future.
According to Steele (1995), almost all patients will require
surgery for their primary disease, at least to prevent
obstruction or bleeding, staging of colorectal cancer guides
the need for adjunctive treatment. Therefore, staging of
the cancer was examined in an attempt to predict the sequela
that occurs from each type of treatment option.

Ethnic distribution of the 117 patients included 101
Caucasians (86.3%), six African-American (5.1%), 1 Hispanic
(.9%), and two identified as having other ethnic
backgrounds. Fifty-two patients (44.4%) were married, five
(4.3%) were single or have never been married, six (5.1%)

were divorced or Separated, and twenty-four (20.5%) were

37
widowed. The level of education of the patients in this
study was widely dispersed and included completion of grade
school (6.8%, n=8), completion of some high school (12.8%,
n=15), completion of high school (26.5%, n=31), completion
of some college (26.5%, n=31), completion of college (12.8%,
n=15), and completion of a graduate degree (6%, n=7). Two-
thirds of the patients were retired (n=77) due to other
reasons than their cancer, and 13.7% (n=16) identified
themselves as homemakers. Eleven percent (n=12) of the
patients continued to work either on a full-time or part-
time basis. The combined household income for 14% (n=16) of
the population was $19,000 or less. Close to nine percent.
(n-10) had a household income between $10,000 and $15,000,
with nine percent of the population having a combined
household income greater than $50,000. Seventeen percent of
the sample did not wish to disclose this information.

The caregivers in this study consisted of 17 males
(14.5%) and 47 females (40.2%), with missing information
regarding gender on-45.3% (n=53) of the population at this
time.. The average age of a caregiver was 59.8 years
(SD812.9), with ages ranging from 31 to 70 years. Spouses
consisted of 26.5% (n=31) of the caregivers in this sample,
the patient's children and sons/daughters-in-law accounted
for 7.7% (n-9) and .9% (n=1) of the caregivers,
respectively. Other caregiver relationships included
brother/sister of the patient (1.7%, n=2), grandson/daughter

(.9%, n=1), niece/nephew (2.6%, n=3), or a friend/companion

38

(1.7%, n=2). The primary caregiver lived with the patient
in almost 40% of the sample (n=46) and lived apart from the
patient in 15% of the sample (n=17). The caregiver moved
closer to, or in with the patient to assist with their
cancer care in 2.6% of the population (n=3). Table 1 will
visually display the sociodemographic distributions of this
sample.
Wine

The first research question sought to determine the
symptoms in type, number, and severity, experienced among
colorectal cancer patients during the period of time after
the initiation of treatment. Out of the 37 symptom
complaints introduced to patients, only one was not
responded to affirmatively by any of the patient population
(the symptom of breast tenderness). The list of symptoms
are presented in Table 2 to illustrate the most commonly
occurring problems and what percent of the population
experienced them. The ten most commonly experienced
problems experienced by this sample of colorectal cancer
patients in descending order of occurrence included waking
up at night to urinate (66.7%), n=78), fatigue (66.7%,
n-78), pain (42.7%, n=50), diarrhea (41.9%, n=49), weight
loss (41.9%, n=49, dry mouth (40.2%, n=47), poor appetite
(38.5%, n-45), weakness (38.6%, n=43), trouble sleeping
(35.9%, n-42), and frequent urination (29.1%, n-34).

The total number of symptoms each patient experienced

was summed and then analyzed to determine the frequency of

39

Table 1.
S i i l' Eyll E l' l E J l' lfl=llll

 

Sociodemographic Information N %

 

Patient Gender

Male 56 47.9
Female . 61 52.1
National Origin

Caucasian 101. 86.3
African-American 6 5.1
Hispanic 1 0.9
Other 2 1.7
Missing 7 6.0

Stage of Cancer

I 1
II

III

IV

V

\INHGU'I

Treatment for Cancer
Surgery . 99 84.6
Chemotherapy or Radiation (begun treatment) 74 63.2
Chemotherapy or Radiation (scheduled to begin) 32 27.4

Caregiver Gender

Male ' 17 14.5
Female. 47 40.2
Missing Information 53 45.3
Caregiver Relationship to Patient

Spouse 31 26.5
Daughter/Son 9 7.7
Daughter/Son-in-law 1 0.9
Sister/Brother 2 p 1.7
Granddaughter/Son 1 0.9
Niece/Nephew 3 2.6
Friend/Companion 2 1.7
Missing Information 68 58.1
Caregiver Lives with Patient

Yes _ 46 39.3
NO ~ 17 14.5

Missing Information 54 46.1

 

 

 

 

40
Table 1 (cont.)
Sociodemographic Information N %
Combined Household Income
$5,000-$9,999 16 13.7
$10,000-$14,999 10 8.5
$15,000-$24,999 27 23.1
$25,000-S34,999 26 22.2
$35,ooo->=$9o,ooo 18 15.6
Missing Information 20 17.1

 

Table 2.

The_Txns1_Nunber1_2srcent1_and_Sn_of_S¥mntnms_Exnerienced
WWI ' I

JNEIIZL

 

 

Symptoms Severity

Symptoms Experienced (N=117) ti % SD Mean* SD

Waking up at night to urinate 78 66.7 .45 1.3 .57
Fatigue 78 66.7 .45 1.6 .69
Pain 50 42.7 .50 2.0 .73
Diarrhea 49 41.9 .50 1.98 .83
Weight Loss 49 41.9 .50 1.6 .71
Dry Mouth , 47 40.2 .50 1.5 .69
Poor Appetite 45 38.5. .50 1.8 .76
Weakness 43 36.8 .49 1.7 .73
Trouble Sleeping 42 35.9 .49 1.7 .77
Frequent Urination 34 29.1 .47 1.8 .74
Altered Taste 33 28.2 .46 1.5 .71
Itching 32 27.4 .46 1.4 .67
Urgent need to urinate 26 22.2 .43 1.4 .57
Lack of sexual interest 23 19.7 .41 2.0 .83
Nausea 22 18.8 .41' 1.6 .73
Mood Changes ’ 22 18.8 .40 1.4 .58
Sweats and night sweats 16 13.7 .36 1.7 .79
Cough 15 12.8 .35 1.4 .60
Difficulty concentrating 14 12.0 .34 1.3 .50
Mouth sores 14 12.0 .34 2.0 .88
Bleeding or bruising 13 11.1 .33 1.4 .65
Dizziness . 13 11.1 .33 1.3 .48
Constipation 12 10.3 .31 1.8 .84
Difficulty breathing 10 8.5 .29 1.4 .52

41

Table 2 (cont.)

 

 

Symptoms .Severity

Symptoms Experienced (N=117) ti % SD Mean* SD
Coordination problems 10 8.5 .29 1.4 .70
Leg swelling 10 8.5 .34 1.3 .68
Vomiting 9 7.7 .28 1.8 .83
Hot flashes 9 7.7 .28 1.7 .71
Numbness/tingling/loss of

feeling 8 6.8 .26 1.4 .52
Leaking urine 8 6.8 .26 1.6 .74
Fever 6 5.1 .23 1.5 .55
Dehydration 5 4.3 .21 2.4 .89
Difficulty swallowing 5 4.3, .21 1.8 .84
Limitation in arm movement 5 4.3 .25 1.6 .90
Vaginal dryness 3 2.6 .23 ‘1.3 .58
Arm swelling 2 1.7 .16 1.5 .71

 

*Scale 1-3

how many patients within the sample experienced that same
total symptom count. Through this analysis, it was found
that the number of symptoms a patient experienced ranged
from one (3.4% occurrence), to as many as 19 (1.7%
occurrence) symptoms, with the sample population averaging
7.6 symptoms at the time after the initiation of treatment.
Fifty-two percent of the patients (n=6) experienced seven
symptoms or less. The number of symptoms occurring at the
greatest frequency was six (12.8%), followed by nine and
four symptoms (each occurring in 10.3% of the population).
No one claimed fewer than one symptom (n=0).

The average severity of each symptom was tabulated to
determine the extent of difficulty these patients were

having with the symptoms they had experienced. The results

42
showed that colorectal patients in this sample rated the
severity of each symptom an average of 1.5 (on a scale of 1-
3). Almost nineteen percent (n=22) of the average symptom
severity scores were rated at 1, forty percent of the scores
(n-47) were between 1.01 and 1.60, and thirty-six percent
(n=42) were between 1.61 and 2.65 (see Table 3).

The second research question sought to determine how
the number and severity of symptoms impacted a patient's
functional ability. Table 4 illustrates the means and
alphas of the ADL, IADL, and mobility scales of the items
which comprise functional ability. The analysis of ADLs
measured a patient's ability to dress, eat, bathe, walk,
perform toileting, and transfer in and out of bed
independently or if assistance was required for these tasks
(1-5 point scale). The scale consisting of ADL activities
(Alpha=.72) carried an item means of .08. The range of
scores for ADLs included a minimum of 0.01 and maximum of
0.23. There was little variance of the means of all the
tasks making up ADLs (dressing, eating, bathing, walking,
toileting, and transferring in and out of bed). A maximum
score of .23 indicates that all participants in this study
remained independent in this functional activity.

The analysis of IADLs measured a patient's ability to
provide self-transportation, do laundry, shop, housework,
and cook and prepare meals (1-5 point scale). The scale
consisting of IADL activities (Alpha .89) carried item means

of .91.. Item means of .91 indicated that some assistance

 

43

Table 3.

D ' 00 0 M9 on o I .

0.. Iii. 0"

 

 

 

 

 

Count Severity*
(N=111) (N=111)

Overall Patient Average Symptom
Symptom Count N % Severity N %

1 4 3.4 1 22 18.8
2 6 5.1 1.01-1.14 4 3.4
3 5 4.3 1.15-1.20 5 4.3
4 12 10.3 1.21-1.27 6 5.1
5 11 9.4 1.28-1.33 9 7.7
6 15 12.8 1.34-1.40 5 4.3
7 8 6.8 1.41-1.50 10 8.5
8 6 5.1 1.51-1.60 8 6.8
9 12 10.3 1.61-1.71 8 6.8
10 7 6.0 1.72-1.77 5 4.3
11 8 6.8 1.78-1.83 3 2.6
12 6 5.1 1.84-1.89 5 4.3
13 3 2.9 1.90-1.95 2 1.7
14 1 0.9 1.96-2.00 6 5.1
16 3 2.6 2.01-2.09 2 1.7
17 l 0.9 2.10-2.14 3 2.6
18 1 0.9 2.15-2.29 4 3.4
19 2 1.7 2.30-2.63 4 3.4
Missing 6 5.1 Missing 6 5.1
Table 4.

H 5: I E] l E E l' J El'J'l 5 1

Mean SD

Activities of Daily Living*

Dressing 0.13 0.49
Eating 0.03 0.30
Bathing 0.23 0.67
Walking 0.01 0.10
Toileting 0.02 0.20
Transferring in and out of bed 0.03 0.30

ADL Reliability Alpha: .72
Item Mean Range: .01-.23

44

Table 4 (cont.)

 

 

Mean SD

Instrumental activities of daily

living*

Transportation 1.27 1.38
Laundry 0.86 1.24
Shopping 0.95 1.27
Housework 0.75 1.16
Cooking and preparing meals 0.70 1.14
Mobility**

Moderate activities 1.14 0.87
Vigorous activities 1.54 0.72
Lifting and carrying groceries 0.91 0.90
Climbing several flights of stairs 0.82 0.85
Climbing one flight of stairs 0.52 0.79
Bending/kneeling]stooping 0.60 0.71
Walking one block 0.43 0.74
Walking several blocks 0.78 0.84
Walking more than a mile 1.02 0.88
Bathing/dressing yourself 0.31 0.53

Mobility Reliability: .89
Item Mean Range: .31-1.5

 

*Scale 1-5 (1=Independent, 2=Requires Supervision, 3=Some

Physical Assistance Needed, 4=Total Physical Assistance
Needed, 5=Never Performed Activity Before)

**Scale 1-3 (1=Independent/Not Limited at all, 2=Limited a

Little, 3=Limited a Lot)

(minimum and maximum scores respectively).

The item mean of

cooking and preparing meals carries the scale's minimum mean

of 0.70, while transportation provides the scale's maximum

mean of 1.27, indicating that transportation was the area

that patients required the most assistance.

The analysis of mobility measured a patient's ability

to carry out moderate and vigorous activities, lift and

carry groceries, climb one to several flights of stairs,

45
bend/kneel/stoop, walk one to several blocks, walk more than
a mile, and bathe and dress independently (scale of 1-3).
The scale consisting of activities of mobility (Alpha .89)
carried item means of .81. The range of scores for mobility
were .31 (bathing and dressing independently) and 1.54
(performing vigorous activities), which carried the minimum
and maximum scores respectively. Table 4 illustrates the
means, standard deviations, and alphas of the reliability
for the scales for ADLs, IADLs, and current mobility, which
comprise a patient's'functional ability.

Examination of the correlation between symptom count
and symptom severity had revealed the inability to use these
two variables within the same analysis due to their high
correlation value of .92 (Sig. T of .000). Incorporating
these variables that are so closely correlated would cloud
any individual impact they may have on functional ability.
It is for this reason that the variable of symptom count had
been utilized and the average symptom severity variable had
been utilized to encompass the extent of difficulty patients
were having with their symptoms.

Through analysis of the scale comprising ADL
activities, it was reVealed that over two thirds of the
sample were completely independent, with only 6 out of the
117 people requiring assistance in_this area. Therefore
logistic regression was utilized to analyze the impact
symptom count and average symptom severity would have on the

patient performing ADLs. In order to specifically target

46

the impact of symptom count and average symptom severity on
ADLs, covariables in the logistic regression that were
controlled included age and the patient's current mbbility,
due to their individual impact on physical functioning (Mor
et al., 1994; Vinokur et al., 1990). A patient may have
limitations in mobility before their diagnosis of cancer
which may be a result of a patient's decreased strength and
cardiovascular endurance, sedentary lifestyle, or other
comorbid conditions. Therefore, the patient's current
mobility status has been controlled in this analysis to
clearly isolate the impact of symptom count and symptom
severity on the patient's ability to perform ADLs. The
results of this analysis showed that the combined effects of
the patient's age, current mobility status, symptom count,
and average symptom severity had a significant impact on a
patient's ability to perform ADLs (Sig F .0000). Evaluation
of each of the variables revealed that the patient's age,
symptom count, and average symptom severity (Sig T of .08,
.72, and .64 respectively) did not have an independent
impact on a patient's ability to perform ADLs, however the
patient's current mobility was the greatest indicator in
determining their need for assistance (Sig T .0003) after
the initiation of treatment for their cancer.‘

To determine if symptom count and the average severity
of symptoms impact a patient's ability to perform
instrumental activities of daily living, a multiple

regression analysis was utilized due to the greater

 

47
variability within the IADL scale. The patient's age and
current mobility have been controlled for in this analysis
also to clearly isolate the impact of symptom count and
severity on the patient's ability to perform IADLs.
Moderate correlations between the independent variables
(age, symptom count, average symptom severity, and current
mobility) did not show colinearity in this analysis.
Multiple regression data showed that the combined effects of
age, symptom count, average symptom severity, and current
mobility level did impact a patient's IADL activities (Sig F
.0000). Determination of individual impact on IADLs was
seen by examination of the Sig T of symptom count (.58),
average symptom severity (.21), the patient's age (.31), and
current mobility (.00). The results showed that again, a
patient's mobility status was the greatest indicator in
determining the need for assistance with instrument
activities of daily living.
. The examination of the effects of symptom count and
average symptom severity on a patient's mobility was also
done utilizing regression analysis. The patient's mobility
was not controlled in this analysis due to the perfect
correlation with the dependent variable, however age
continued to be controlled. Results of the regression
analysis showed that the combined effect of the patient's
age, symptom count, and average symptom severity did impact
the patient's mobility with a significant F of .0000.

Determination of the individual impact of each of these

 

48

variables was seen by examination of the Sig T of the
patient's age (.0040),.symptom count (.0569), and average
symptom severity (.0072). The results showed that a
patient's age and their average symptom severity
individually impact a patient's ability to maintain their
mobility status. Table 5 illustrates the regression
analysis results of the impact of symptom number and average
symptom severity on a patient's functional ability, which is
comprised of ADLs, IADLs, and mobility.
9.: :co. 0 0‘ :- ‘ ' g g- o. ‘o . .u‘.o

The results of this study supported Dorothea Orem's
Self-Care Deficit conceptual model (Orem, 1991). The
combined effects of a patient's age, current mobility,
symptom count and average symptom severity have a
significant impact on a patient's functional ability. The
patient's age and the average symptom severity have a direct
impact on a patient's mobility. A patient's mobility, in
turn, directly impacts a patient's ability to perform ADLs
and IADLs. Therefore, it can be concluded that the combined
effects of a patient's age, their current mobility, and the
number and severity of symptoms they are experiencing at the
time after the initiation of treatment may result in a self-
care deficit for the patient. Additionally, the nurse
should be aware of the patient's age, mobility status, and
the severity of their symptoms, as each will directly
contribute the patient's functional ability. Prevention of

developing a self-care deficit, or restoration to

 

 

49
Table 5.

(‘9 ’ .0 $0- - '0’. °. 0 Ill? .II 0 I '0. 6 ‘ '9’

 

Significant T

 

Activities of Daily Living

Patient Age 0.0847 Combined Effects
Symptom Count 0.7248 Sig F

Average Symptom Severity 0.6423 0.0000*

Current Mobility 0.0003*

Instrumental Activities of Daily Living

Patient Age 0.3134 Combined Effects
Symptom Count 0.5758 Sig F

Average Symptom Severity 0.2127‘ 0.0000*

Current Mobility 0.0000*
Mobility

Patient Age 0.004* Combined Effects
Symptom Count 0.0569 Sig F

Average Symptom Severity 0.0072* 0.0000*

 

*Statistically Significant

independent self-care, will be dependent on the variables
that can be modified, such as the severity of symptoms and
the maintenance or improvement of the patient's current
mobility status; Results from this study infer that
minimizing or resolving the severity of symptoms will
improve a patient's mobility, which will then improve a
patient's ability to perform ADLs and IADLs, therefore
returning to their self-care status (see Figure 4).
Discussion

Sample

In this retrospective descriptive study, a total of 117

patients diagnosed with colorectal cancer were surveyed to

50

   

 

Nursing Intervention:

 

 

 

 

 

 

 

 

Partial/W holly Compensatory
Nursing Intervention:
Preventive Maintenance Self-Care
Deficit
ADL/
IADL

/\ \

Patient ymp om Patient ympto
Age Count Age Severity

W: Results of the Study Within Orem's Conceptual
Framework

   

51
determine the type, number, and severity of symptoms they
were experiencing after the initiation of treatment and how
these symptom affected their ADLs, IADLs, and mobility. Out
of 117 patients interviewed, 48% were men and 52% were
women, with the average age of participants being 72.4 years
(SDs6.1 years). Literature by the American Cancer Society
(1996) states that colorectal cancer affects men and women
in equal numbers and targets the elderly, with 62% of the
cases diagnosed between the ages of 60 and 70 years, which
is consistent with the demographics of this population
except that diagnosis in this sample occurred at a slightly
greater age (72.4 years). Eighty-six percent of the sample
were Caucasian, 5% African-American, and 9% were other
nationalities or had missing information. This is also
consistent with the previous research studies identified in
this paper, which contain largely Caucasian dominated
samples, with little minority representation.

Eighty-five percent of the patients in the sample had
undergone surgery for their cancer. This demographic
characteristic is supported by Steele (1995) which states
that surgery is the primary therapy for colorectal cancer
with almost all patients undergoing surgery, at least to
prevent obstruction or bleeding.

The_caregivers in this study consisted of 40% females
(n=47) and 15% males (n=17), averaging 59.8 years in age.
Literature by Given and.Given (1995) and Olson (1989)

support this information with their findings that caregivers

 

52

for patients with cancer are often women over 55 years of
age. Further evaluation revealed that 27% of the caregivers
in this sample were spouses (n=31), the gender of the
spouses being split almost equally (20% male and 21%
female). This also supports literature of the American
Cancer Society (1996), referring back to the statement that
colorectal cancer affects men and women equally, which then
leaves their counterpart spouse in the caregiving role.

Almost 40% of the caregivers lived with the patients in
this study. If a spouse was not present or unable to act as
caregiver, older cancer patients were more likely to be
cared for by their adult children. This is supported by the
demographics in this study which showed that a daughter or
son acting as caregiver accounted for the second largest
percentage (7.7%) of caregivers of the data available.. In
these situations, the adult children may have changed their
living arrangements temporarily (by moving closer to our in
with the patient) or visited the patent in their home more
frequently to assist in their cancer care, however living
together was not usually a permanent arrangement. This
trend was seen in 2.6% of the sample, who moved from their
previous living arrangements to assist with the care of
their loved one.

The combined household income for almost 14% (n=16) of
the patients was $9,999 or less, putting them at or near the
poverty level, which has been determined to be $9,930 by the

United States Census (1997). The combined household income

 

53

for close to nine percent (n=10) of this population was
between $10,000 and $15,000, with nine patients making more
than $50,000. 'This illustrates that many patients were
living on a moderate to low income and can still expect to
receive medical bills to pay for the patient's cancer care.
Many of the patients were retired and therefore living on a
fixed income that had been eStablished years prior to their
diagnosis of cancer. The financial status of a patient
becomes important if a patient lacks health insurance, if
health care costs exceed the financial resources of the
patient, or if assistance is required in the home. Fiscal
limitations may force a patient to discontinue needed
medical treatments or may limit their ability to continue
with needed follow-up appointments. Financial assistance
may be available to the very low income patients. However,
those patients who make too much money to be considered very
low income, yet are still struggling to make ends meet, are
left to find assistance from other resources, such as from
their family or church. The percentage of patients on
Medicaid, Medicare, or Medigap has not been examined within
this study.and should be included in future research work.

The demdgraphic characteristics of the sample were
largely consistent with the literature. The patents were
split almost equally in percentage of males and females, as
were their counterpart spouse caregivers. The age at time
of diagnosis is slightly higher than the literature reports,

however the.difference is small enough to be considered a

54

normal standard deviation. The female caregiver, aged 55
years and older, follows typical demographic characteristics
established by the literature, with adult children likely to
take over the caregiving role if a spouse is not present or
able to participate in this Capacity.
WW

Among this sample, patients identified a total of 36
different symptom complaints. No one experienced fewer than
one symptom. The ten most frequently occurring problems at
the period of time following the initiation of treatment for
their cancer were waking up at night to urinate, fatigue,
pain, diarrhea, weight loss, dry mouth, poor appetite,
weakness, trouble sleeping, and frequent urination. The
large majority (85%) of these patients had undergone surgery
as treatment for their cancer, which may account for the
high incidence of fatigue, pain, diarrhea, urinary problems,
and trouble sleeping, which were symptoms typically found in
patients recovering from surgery. Two thirds of the
population experienced waking up at night to urinate and/or
fatigue. Forty percent experienced pain, diarrhea, weight
loss, and dry mouth. Poor appetite, weakness, and trouble
sleeping were experienced by 36-39% of the sample, and
frequent urination was experienced by almost thirty percent
of the sample. These findings are supported by research in
the field, when patient samples included colorectal
patients, examining cancer and its symptoms (Steele, 1995;

Kurtz et al., 1993; Kurtz et al., 1994; Mor et al., 1994).

55

The presence of urinary problems was the most common
complaint and may result from various etiologies. Urinary
problems may have been present before the diagnosis of
cancer, and may have continued or gotten worse. Prescribed
medications may cause or worsen urinary problems, or these
problems may have occurred as a result of the proximity of
the bladder to the colon for patients who have undergone
colon surgery and/or radiation treatment. Previous
literature also supports the findings that fatigue, pain,
nausea, poor appetite, and constipation were among the
leading symptoms found in patients diagnosed with a solid
tumor or lymphoma (Kurtz et al., 1994). In this study,
fatigue and pain were the second and third symptoms
experienced among this sample, with 67% and 43% of the
patients complaining of these difficulties respectively.
Within this sample, 42% of the patients had experienced
diarrhea. The symptom of diarrhea has been identified as
one of the clinical_signs that may alert a clinician to the
potential diagnosis of colorectal cancer (Steele, 1995),
therefore, due to the diagnostic nature of diarrhea and the
interview occurring so close to cancer diagnosis, this
symptom can be expected to be present in a large percentage
of the population.

The wide variety of symptom complaints (36 in number)
voiced by this sample may be attributed to a patient's
chosen method of treatment, the closeness of the interview

following surgery, or may be related to a patient's pre-

56
existing medical condition. Research by Sprangers et al.
(1995) found that diarrhea, urinary problems (with increased
incidence in patients receiving stomas), and disturbed sleep
were among the most frequently occurring symptoms in
patients undergoing surgery for the treatment of their
colorectal cancer. The results of that study are consistent
with the findings of this inquiry, showing that at least 29%
to as many as 67% of the population experienced at least one
of these symptoms (diarrhea, urinary problems, and/or
disturbed sleep) at the time after the initiation of
treatment. This finding is not surprising due to the large
percentage of patients undergoing surgery as treatment for
their primary cancer and the proximity of the interview to
the surgery date. It has been found that at least 29% to as
many as 67% of the population experienced at least one of
these symptoms at the time after the initiation of
treatment.

Symptom complaints that may be related to the method of
intervention of chemotherapy included nausea, vomiting,
altered taste, dizziness,_and fatigue. The nature of this
type of treatment causes systemic symptomatology, which
might have accounted for the wide variety of symptom
complaints. These systemic symptoms may have occurred in
addition to, or may exacerbate, the more site specific
symptoms mentioned earlier related to surgery (diarrhea,
urinary problems or disturbed sleep). Previous research

supports these findings of the systemic nature of

57

chemotherapy, with its accompanying diverse symptomatology,
in their examination of various forms of this type of
treatment. The symptoms most frequently reported in these
studies included hair loss, nausea, tiredness, and
gastrointestinal complaints (Love at al., 1989; DeHaus et
al., 1990). Research by Love et a1. (1989) followed symptom
complaints throughout the patient's first six cycles of
chemotherapy, which accounted for the complaint of hair
loss, which occurs in the later stages of treatment and not
at treatment initiation. Of the symptoms most frequently
reported in previous research work involving chemotherapy,
in this study fatigue is by far the symptom that affected
the largest percentage of patients (67%). However this may
have been a result of the commonality of this symptom
complaint fOr all of the cancer interventions examined in
this study (surgery, chemotherapy and radiation treatments).
The dispersion of other symptoms found by Love and
colleagues (1989) within this sample of colorectal cancer
patients, included altered taste, experienced by 28% of the
patients, followed by nausea (19%), dizziness (11%), and
vomiting (8%). Inclusion of all treatment interventions
(surgery, chemotherapy, and radiation therapy) may have
accounted for the dispersion of the symptoms in this sample,
as compared to the work by Love and colleagues (1989).

It should be noted that in addition to the systemic
nature of the symptoms that may result from chemotherapy,

this type of treatment can also diminish a patient's immune

58
system. This effect of chemotherapy leaves a patient more
susceptible to opportunistic organisms, which may result in
the patient experiencing frequent upper respiratory tract
infections or influenza. Therefore, symptom complaints such
as fever, cough, or difficulty breathing may be a result of
the treatment for colorectal cancer as opposed to the cancer
itself.

Symptoms such as difficulty swallowing, arm swelling,
coordination problems, or limitations in a patient's arm
movement each occurred in less than 10% of the sample.

These are vague complaints that appear to have little to no
correlations with a patient's cancer diagnosis or with any
kind of treatment. It is with this in mind that a patient's
health status prior to the diagnosis of cancer and the
possibility that the treatment for cancer may exacerbate
pre-existing conditions. Previous surgeries may render a
patient with chronic limitation in movement._ Comorbid
conditions such as diabetes or hypertension may result in
numbness or tingling in the extremities or occasional
dizziness. Seasonal changes in the weather may cause dry
mouth or sweats. 'Patients may have lived with the above
conditions for a number of years before their diagnosis of
cancer, however they reported these previous conditions have
been exacerbated by their chose method of treatment.

Despite the interview questions asking the patients to
attribute symptom complaints to their cancer, some

complaints may cause confusion for the patients as to the

59'
etiology of specific symptoms (i.e., sweats or nausea may be
related to the flu, however, it is up to the patient to
diagnose if these symptoms are a result of a compromised
immune system secondary to cancer treatment or just an
isolated occurrence of gastroenteritis). Therefore all
symptoms may not be directly related to a diagnosis of
colorectal cancer or its treatment, but may be compounded by
diagnosis and/or cancer treatment.

Previous research by Love at al. (1989) described the
fluctuations that occur in symptom experience over the
course of time as a result of chemotherapy treatments. This
is beyond the scope of this study due to the interview
occurring at only one time during the patient's cancer
treatment regimen. It can be hypothesized, however, that
since this analysis occurs after treatment intervention,
symptom occurrence will deCrease over time for patients who
have undergone only a surgical intervention. A gradual
return to baseline health and diminishing symptoms is
normally seen in patients as they recuperate in the weeks
following surgery. Utilizing the findings of Love et a1.
(1989), and assuming generalizability to the patients in
this sample who utilize chemotherapy or radiation therapy,
it can be hypothesized that the number and severity of
symptoms will fluctuate over the course of the patient's
treatment. This will be keenly evident in patients
undergoing chemotherapy and radiation therapy, with the

number and severity of symptoms peaking and diminishing, the

 

60
symptom exacerbation coinciding with their adjunctive
treatment and resolving during the period of time between
their treatment cycles.

This study has shown that a patient experienced an
average of seven symptoms after the initiation of treatment.
No one reported fewer than one symptom. Although the
research works mentioned.previously explored the most
frequently occurring symptoms in their populations, the
average number of symptoms experienced has not been
reported. Therefore, comparatively, it is not possible to
determine if this is a larger number of symptoms for this
particular cancer population. However, it can be postulated
that the reported seven symptoms is possibly an
underestimation, as research by Hickey (1988) has found that
the elderly tend to underreport their symptoms. Therefore,
the age of this population indicates that the average number
of symptoms experienced may be higher than the results of
this study have indicated.

Whether a patient's symptoms were a result of the
cancer itself, from pre-existing conditions that had been
exacerbated, or the treatment of cancer, the difficulty that
a patient experienced was reflected in the severity score
for each symptom.v The average severity of symptom
complaints was 1.52, with a minimum severity complaint of
1.0 and a maximum Complaint ranked at 2.63 on a 1-3 point
scale. Therefore, for each symptom complaint, a patient

perceived as being the most severe (scored at 2.4), followed

61
by pain, diarrhea, lack of sexual interest, and mouth sores,
which were scored at 2.0 (on a scale of 1-3). The ten most
frequently occurring symptoms and their corresponding
severity scores, on a scale of 1-3, included waking up at
night to urinate (1.3), fatigue (1.6), pain (2.0), diarrhea
(1.98), weight loss (1.6), dry mouth (1.5), poor appetite
(1.8), weakness (1.7), trouble sleeping (1.7), and frequent
urination (1.5). It can be assumed that having seven
symptoms rated at a mild to moderate degree of severity will
have a significant impact on a patient's life.
‘uo on o I 1". on a - . .go . o... ;o

The determination of the impact of symptom count and
symptom severity on functional ability was accomplished by
examining ADLs, IADLs, and mobility separately. To isolate
the specific impact of symptom count and average symptom
severity on ADLs and IADLs, age and patient's current
mobility were controlled. Previous research (Mor et al.,
1994; Kurtz et al., 1994) indicated the need to control for
age, as this variable does independently influence the
course of disability. Including age as a covariable
eliminated the bias that may occur with this elderly
population and assisted in presenting clear findings
regarding the specific impact of symptom count and average
symptom severity on functional ability. A patient's current
mobility status would also affect their ability to perform
ADLs and IADLs. An impaired ability to climb stairs (a

mobility task) may limit a patient's independence in washing

62

if the bathroom is upstairs, or doing laundry, if these
facilities are in the basement. Therefore, mobility was
controlled to avoid any bias in this analysis regarding if
assistance in ADLs and IADLs was due to the patient's
present mobility status as opposed to the impact of symptom
count and severity. Again, this was done to specifically
isolate the impact of only symptom count and average symptom
severity on ADLs and IADLs, controlling for all other
factors that may have also affected functional ability.

Results were similar for both ADLs and IADLs, showing
that the combined effects of symptom count, average symptom
severity, the patient's age and the patient's current
mobility did collectively impact a patient's ability to
perform their activities of daily living and their
instrumental activities of daily living, all with Sig F
.0000. However, independently, neither symptom count nor
average symptom severity directly impacted ADLs or IADLs.
The variable that did independently influence the patient's
need for assistance in ADLs and IADLs was the patient's
mobility status. This result is interesting in that
previous research (Portenoy et al., 1992; Daut & Cleeland,
1982) has clearly correlated symptoms with a loss of
physical functioning. This may be explained by methodology,
in that these prior studies interviewed patients at
different times than this study, including the period of

time well into their treatments.

63

The results from this study differ from previous work
possibly as a result of different measures and analysis
techniques. ADLs (dressing, eating, bathing, walking,
toileting, and transferring in and out of bed) and IADLs
(transportation, laundry, shopping, housework, and cooking
and preparing meals) are comprised of concrete tasks that
make up these two functional abilities. This list of
specific tasks directed the patient to identify specific
areas of needed assistance within each category of ADLs and
IADLs. Portenoy and colleagues (1992) examined only one
symptom (pain) and utilized categorical scales to explore
the interference of pain with general activity, walking,
mood, sleep, social relations, work, and enjoyment of life.
These categories of various activities were broad for
patient interpretation, having the patient assess an overall
interference in life. The difference between identifying
specific tasks within the ADL and IADL categories and
inquiring as to whether assistance has been needed to
accomplish these tasks, provides a greater clarity as to the
extent of impairment in these areas. Therefore, the results
of the analysis of the impact of symptom count and average
symptom severity on ADLs and IADLs was more specific to the
tasks involved in a patient's functional ability.

Another area of difference of this study from previous
work was the decision to control for the patient's current
mobility. The physical functioning of a patient may be

impaired before the diagnosis of cancer as a result of

64
comorbid conditions such as arthritis, heart disease, or
Parkinson's disease. The average age of the patients within
this study (72.4 years) lends to the assumption that the
large majority of participants will have at least one
comorbid condition that will have an impact on their cancer
experience and convalescence. Although these conditions may
have been present before the diagnosis of cancer and the
patients were asked during the interview if the tasks of
mobility were limited as a result of their cancer diagnosis
or treatment, controlling for current mobility will
eliminate any bias that may occur from the patient
misunderstanding the specificity of the question related to
the affects of cancer on mobility. For purity of results,
controlling for a patient's current mobility has been done
to pull out the specific impact the number of symptoms and
their average severity has on a patient's functional
abilities.

A limitation of these analyses is that the surgical
impact on mobility has not been examined. The recovery
process of surgical patients in itself involves limiting a
patient's mobility. Immediately after surgery, the patent
is restricted to short walks in their room and/or hall. The
mobility of these patients will gradually increase as their
strength returns following surgery and as prescribed
limitations (such as lifting heavy objects) are removed
during follow-up visits. The results of this analysis

showed that mobility is the greatest indicator of the need

‘65
for assistance with ADLs and IADLs, however, the specific
cause of lack of mobility have not been addressed. .
Considering that eighty-five percent of the patients had
undergone surgery for their cancer, the patient's previous
functioning ability (prior to the diagnosis of cancer)
should be controlled in future research, with the assumption
that the need for assistance with functional abilities
before the cancer diagnosis does not reflect the effects of
cancer. .Therefore, controlling for previous functional
abilities should capture limitation in functioning that may
result from surgical interventions. Future research should
examine the etiologies of mobility through statistical
analysis to assist in further predicting the patients who
will require assistance with their ADLs and IADLs.

Mobility, as a component of functional ability, had
been analyzed to determine the impact that has been exerted
by the number of symptoms and average severity of symptoms a
patient might have. 'The results showed that both the
patient's age and the severity of symptoms did impact a
patient's mobility status. Research by Kurtz et a1. (1994)
supported these reSults with their findings that loss of
physical functioning was associated primarily with symptoms.
This study separated the number of symptoms from their
severity to determine which would have the greatest impact.
Results from this study leads the reader to assume that a
patient may have as many as 13 symptoms, but if he/she

perceives them to be limited in severity, their mobility

66
will not likely be disrupted. However, a patient may have
only one symptom (fatigue or diarrhea, for example), but if
it is considered to be severe in nature, their mobility
becomes impaired. Fatigue may result in limitation in a
patient's mobility due to the lack of energy to participate
in their previous regimen of walking or golfing. Severe
diarrhea may hinder mobility by leaving the patient with a
feeling of their inability to leave the house for fear of
not being able to find a rest room when needed. Immediately
post-op, a patient's mobility is restricted to short walks
to the bathroom, however that continues for only 24-36
hours. Recovery from that time on may limit mobility due to
related symptoms such as pain.

Through these analyses, it was determined that the
combined effects of a patient's age, current mobility,
symptom count, and their average symptom severity had an
impact in a patient's ADLs and IADLs. Symptom severity and
age directly impacted a patient's mobility, and a patient's
mobility directly impacted the need for assistance with ADLs
and IADLs. Therefore, the severity of a symptom, such as
pain, directly impacted the patient's mobility, which then
would be a predictor of potential needed assistance with
activities of daily living and instrumental activities of
daily living.

This study showed that this sample of colorectal cancer
patients experienced an average of seven symptoms at the

time after the initiation of treatment, with a perceived

67
average severity of 1.52 (on a scale of 1-3). In all
analyses, the combined effects of the patient's age, current
mobility, symptom count, and average symptom severity had a
significant effect on the patient's functional ability,
which included ADLs, IADLs, and mobility. The number and
severity of symptoms a patient experienced did not directly
impact a patient's ability to perform activities of daily
living or instrumental activities of daily living when the
patients' age and current mobility was controlled for.
Results did show that the patient's age and severity of
symptoms did directly impact the patient's mobility, and the
patient's current mobility did have a direct cause-and-
effect relationship on a patient's ability to perform ADLs
and IADLs.
I ll Ii E ”El 1 E l' H .

Colorectal cancer is the third most common cancer and
the second leading cause of cancer mortality, occurring in
men and women equally and targeting the elderly. With our
elderly population increasing, the prevalence of this cancer
will continue to rise. The movement of cancer treatments
from in-hospital to outpatient settings leaves the patient
and caregiver to manage the day-to-day symptoms and
treatment goals of their cancer, such as transportation to
appointments, following treatment plans, and administering
of medications. The need to utilize advanced practice
nurses as resources in this population is increasingly

evident due to the needed assessment skills for both

68
physical and psychosocial needs, case managing and
collaborative expertise with all involved health care
professionals, and the capacity for APNs to advocate for
patients and their family during their cancer experience.

A comprehensive assessment of the patient and
caregiver's knowledge, expectations, and needs is an
essential first step in assisting the family during their
cancer experience. Assessment of the patient/caregiver's
knowledge and expectations should inelude an evaluation of
the information given to the family at the time of diagnosis
of colorectal cancer and their understanding of the
information. Any deficits noted in these areas should be
addressed by the advanced practice nurse (APN).

The advanced practice nurse must use her clinical
skills to thoroughly assess the patient and/or caregiver's
needs. This assessment will be essential in developing the
plan of care with the patient and caregiver, and should
include physical and psychosocial needs. This assessment
should be based on past medical history, cancer stage and
chosen treatment, consideration of resources in the home,
and any other verbalized needs.

This study has identified that a patient experiences an
average of seven symptoms at the time of treatment
initiation, rating them at a mild to moderate degree of
severity. It is imperative that a thorough history should
be taken of all the symptoms the patient has been

experiencing. This should include information regarding

69
when the symptom started, how long it lasts, aggravating or
alleviating factors, the current home management treatment
for that symptom, and if the symptom was present before the
diagnosis of cancer. The identification of symptoms can be
aided by considering the site of the tumor, stage of cancer,
and method of treatment. Swift and thorough determination
of the patient's symptom complaints may be achieved through
the use of an assessment tool that could consist of
presenting numerous symptoms in list-life fashion, and
asking the patient to mark each symptom helshe has been
experiencing. This assessment tool could also contain a
rating scale to determine the patient's perception of the
severity of each symptom complaint.

After the patient's symptom assessment is completed,
the APN can then assist the patient in symptom control
through timely interventions and instruction on home
management to diminish the severity of these symptoms and
therefore improve clinical outcomes. Improvement of
clinical outcomes can be measured by a reduction in the
severity or number of symptom complaints as reported on the
symptom assessment tool with each visit. Reduction of the
symptoms, in severity, will diminish the potential of a
patient developing a functional disability in ADLs, IADLs,
and/or mobility, therefore also improving clinical outcomes.

Through the results of this study it can be assumed
that a large majority of patients with colorectal cancer

will experience nocturia or fatigue or both. The APN can

70

educate the family on restricting fluids or eliminating
fluids two hours before bedtime to decrease the frequency a
patient has to get up during the night to urinate.
Examining the medication schedule of the patient might
reveal the necessity to educate the patient on the timing of
their medication and suggest taking their prescribed
diuretic at 5:00 pim. instead of 7:00 p.m., which would have
the peak action of this medication kick in during wakeful
hours, thus decreasing or eliminating getting up at night.

Fatigue can be managed at home with the help of the APN
by initially providing the family with information that this
symptom is commonly experienced by patients with colorectal
cancer and can be possibly diminished with the help of
family and friends. Providing the patient and family with
methods of assisting the patient with their fatigue may
include incorporating rest periods during the day and
scheduling physician visits or treatments during the time of
day that the patient has the most energy. Encouraging
family and friends to assist with activities such as
housework, shopping, and cooking/preparing meals frees the
patient from daily activities and will promote rest time.
It will also be important for the APN to discuss with the
patient and caregiver the importance of accepting help from
family and friends. Accepting the offered help will not
only assist the patient and caregiver in coping with fatigue
and the multiple appointments involved in cancer treatments,

it is also a way for family members and friends to

71
participate in the patient's cancer care and have a sense of
helping their loved ones during this difficult time.

Treatment of other symptoms experienced by patients
should include a thorough assessment by the APN and
collaboratiOn with the family and other health disciplines
as necessary. The APN can manage nausea through education
on the preparation of bland diets, encouraging small
frequent meals, and/or prescribing antiemetics and educating
the family on timely administration of the medication,
before the nausea becomes too severe or before their
adjunctive therapy to prevent the nausea from occurring.
Most symptoms experienced can be managed by the APN through
education of the patient and family, anticipatory guidance
to prevent exacerbation of symptoms, timely interventions to
diminish the severity of symptoms, and collaboration with
the family to determine effectiveness of any intervention
and the family's ability to carry out treatment plans at
home.

The advanced nurse practitioner must not only be alert
to the many symptoms that patients are experiencing, the APN
must also be alert to the implications of the severity of
these symptoms. The most important study finding is that
symptom severity directly impacts a patient's mobility.
Therefore, it is imperative for APNs to address timely
interventions to minimize symptom severity to prevent
mobility impairment. Limitations in mobility may prevent or

hinder the patient from moving about the community, walking,

72
and climbing stairs. Reduction in mobility, as shown
through this study, then impacts a patient's ability to
perform ADL and IADL tasks, compromising the patient's self-
care agency and the patient's ability to achieve self-care.
It is for this reason that the symptoms experienced by
patients should be addressed swiftly to either eliminate the
symptom occurrence or at the very least, diminish its
severity. The results from this study have shown that as
the severity of symptoms increase, the patients mobility
decreases. Therefore, the APN's inquiry of symptom severity
should also include questions as to whether the patient
and/or caregiver feels that the severity of these symptoms
impedes the patient's mobility about the house and
community. For clarity of limitation, the APN should list
specific tasks such as their ability to lift or carry
groceries, participate in moderate to vigorous activities,
climb one to several flights of stairs, walk one block to
over a mile, and their ability to bend, kneel, and stoop.
Explicit information as to the current limitation
experienced and previous level of functioning are necessary
to determine the patient's baseline mobility level and the
degree of the new impairment.

The advanced practice nurse's ability to reveal
limitations in a patient's mobility will also provide
insight into potential limitations in other areas of a
patient's functional ability. This study showed that a

patient's current mobility is the greatest indicator for the

73

need for assistance with activities of daily living and
instrumental activities of daily living. This finding
indicates that as a patient's mobility decreases, the
likelihood of the patient requiring assistance with ADLs or
IADLs will increase. Therefore, once limitations in
mobility are ascertained, the APN must evaluate the
patient's ability to perform ADLs and IADLs. Again for
clarity, a specific task list should be presented (i.e.,
bathing, eating, dressing, toileting, walking inside the
home, transferring in and out of bed, laundry, cooking,
housework, shopping, and transportation) to the patient and
caregiver to determine which activities are limited.
Results of this study showed that the APN should keep in
mind that if limitations in mobility have been found, the
patient is likely to have deficits in his/her ability to
perform ADLs and IADLs. To assist in the assessment of need
with functional ability, the APN must use their clinical
expertise in determining that as the age of the patient
increases, the likelihood of the need for functional
assistance increases. The medical hiStory of the patient
should also be incorporated into the assessment of mobility,
with the APN addressing the increased risk for functional
decline in patients with comorbid diseases due to
exacerbation of previous conditions related to the patient's
current treatment regime.

Interventions for limitations in mobility, ADLs, and

IADLs begin immediately after surgery during the patient's

74
in-patient stay, when the nurse must physically assist the
patient with his/her functional activities. Assistive tasks
for patients with decreased mobility immediately post-op may
include transferring the patent in and out of bed, grooming
tasks such as bathing and/or dressing, and walking inside
and outside of the room. The advanced practice nurse must
continue to assess the patient's mobility in preparation to
be discharged from the hospital. The assessment should
include the patient's need for further rehabilitation
(either on an in-patient or outpatient basis) and/or the
need for assistive devices for mobility to be used in the
home, such as the need for a cane or walker. Collaboration
with physical therapy should be utilized to provide
education and demonstration on the use of this equipment.
Prior to discharge, the APN should assess the home
environment through interviews with the patient and
caregiver to determine if there are needs in the home, such
as if a bar is needed in the shower to assist with
transferring, or how many stairs the patient needs to manage
at home.

The APN should collaborate with the patient and
caregiver in determining a plan of action from this
assessment regarding planned activity at home which
coincides with the patient's mobility status. If the
patient's bedroom is upstairs, plans may be made for the
patient to sleep downstairs until he/she increases their

strength. The necessity for education and training of

75
family members in skill acquisition such as transferring the
patient in and out of bed, assisting with colostomy care,
applying depends on an incontinent patient, or preparation
of meals that may decrease nausea and provide optimal
calories for the maintenance of the patient's nutritional
status, is an important part for the APN in the
interventions necessary for a patient who is limited in any
or all components of functional ability. Re-evaluation and
reassessment are an integral part of the APN's role in the
recovery of these patients. Treatment plans must be revised
and updated to reflect the needs of the patent and their
families until a full recovery and return to mobility has
been achieved.

The assessment of resources available to the patient
and caregiver, such as family, friends, church groups, or
other support networks should be determined by the APN for
an evaluation of their ability to continue with their cancer
treatment regimen. “The APN must assess the need for outside
resources such as home care, meals on wheels, transportation
services, or visiting nurses to assist the patient and
family with limited support for these activities.

Evaluation of the financial resources of the patient,
including insurance coverage, will assist the APN in
determining their fiscal risk of no continuing with the
prescribed treatment for their cancer due to limited
resources. Once fiscal need has been identified, the APN

can connect the patient and caregiver with resources in the

76
community that may provide the needed assistance. Through
examination of all resources available to the patient and
addressing any areas of deficit, the APN can increase the
patient's ability to carry through with the prescribed
cancer treatment.

The advanced nurse practitioner's role of case manager
is much needed in assisting patients and their families in
coordinating their treatment regimens. The treatment phase
of cancer often involves weekly to daily treatments, lab
visits, and follow-up appointments. APNs can work with the
patient and the caregiver to set up appointments at the time
of day when the patient feels his/her best, such as in the
morning or in the afternoon after a nap. APNs can also
assist the family in coordinating other services, such as
home care or meals on wheels. The advanced practice nurse
can also serve as a resource for the patient, family, and
other supportive services to assure continuity of care and
communication between all involved providers of care.
Continual assessment and evaluation of the health care
regimen is required of the APN to determine if expected
outcomes are being achieved and if the plan of care needs to
be adjusted.

It is important for the APN to encourage the patient
and caregiver in expressing their feelings and concerns
regarding the diagnosis of care and the effects of the
disease. The patient should be encouraged to express

feelings related to the diagnosis of cancer itself,

77
contending with multiple symptoms, coping with an alteration
in physical functioning, and potential feelings of
helplessness during this time of acute illness. Caregivers
should be encouraged to express their feelings related to
being placed in the caregiving role and any frustrations
with attempting to help the patient manage symptoms at home.
Providing emotional support for both the patent and
caregiver is an essential element of the APN's role.
Exploring past coping mechanisms and current strategies
allows a unique opportunity to provide the patient and
caregiver with lifelong coping strategies which might
include relaxation techniques, journal writings, or music
therapy that will aid in their ability to cope with their
current situation.

The APN must continually advocate for both the patients
and caregivers during this time of cancer treatment. If the
APN's first contact with the patient and caregiver is after
the initiation of treatment for their cancer, the APN may
assess the need to initially take a more directive role in
the care of the patient. This may be necessary if the
patient and caregiver are temporarily overwhelmed by the
diagnosis of cancer and the implications of treatment
intervention on the patient's health. The APN can then
assist the patient and caregiver in maneuvering within the
health care system and obtaining any needed services.
Serving as advocate includes eventually transferring the

responsibility of the patient's care back to the patient and

78

caregiver. The APN will continue to collaborate with the
family and other health care disciplines, provide education
for the patient and other members of the family, provide
support and counseling and assist in problem-solving as
needed, however, the APN's ultimate goal is to transfer'
responsibility of health care to the patient and caregiver
to promote the patient's self-care abilities.
WWW

Currently, there is little research that examines the
impact of the number and severity of symptoms on the
functional ability of patients diagnosed with colorectal
cancer. Therefore, there is a great need to continue this
author's line of research. To establish greater validity
and generalizability for this line of inquiry, future
studies should involve a larger sample size, which should
include a larger minority representation and recruitment of
patients through physician offices to include equal
representation of surgery only, and surgery with adjunctive
treatments, inclusion of comorbid conditions, and an
examination of the number of patients on Medicare and
Medicaid. Inclusion of comorbid conditions would address
compounding factors of symptom complaints, functioning
ability, and cancer convalescence. Examining the insurance
of the participants may help to identify barriers to cancer
treatment or assistive resources. Instrumentation
limitation can be addressed by removing the evaluation of

walking from either the ADL or mobility scale, running the

79
reliability analysis from the scale which walking was
removed, and then run statistical analyses from the new
scale. Following these recommendations would increase
validity and generalizability of the research and also
address limitations of this current study. I

The suggested course of future research would examine
the type, number, and severity of symptoms over a larger
period of time, such as one year or more. Longitudinal
research would provide information regarding the fluctuation
of the type, number, and severity of symptoms over the
course of treatment. This would further examine the work by
Love at al. (1989) and assist in predicting the course of
the cancer experience and assist in developing a plan of
care. Further analysis, by grouping the type, number, and
severity of symptom complaints according to the treatment
modalities the patients are undergoing (surgery,
chemotherapy or radiation therapy), will add further
knowledge regarding which symptoms are more likely to occur
with each treatment and if fluctuations occur as each
treatment continues.over the year.

Future studies should also examine the effect of
symptom count and severity on functional ability over a
longer period of time, such as a year or more. This would
be helpful in determining if the number and severity of
symptoms will eventually have a direct impact on ADLs,
IADLs, and/or mobility as the course of cancer treatment

continues. Examination of the impact of surgery on mobility

80
as the course of cancer treatment continues. Examination of
the impact of surgery on mobility should also be included in
this future work. Results from longitudinal research of
this line of inquiry will assist health care professionals
in the development of treatment plans that will be better
tailored to patients throughout the course of treatment,
instead of patchwork information from multiple studies
gathered at various times of cancer treatment.

Future studies could also examine symptom treatments
and interventions., Research along this line of inquiry
would provide information about the current treatment
regimens and interventions aimed at relieving or lessening a
patient's symptoms, and examining if relief of symptoms
occur, and what percent success rate is involved with the
interventions. The interventions examined could be
pharmacological or adjunctive therapies, such as therapeutic
touch. Benefits for this line of inquiry would be to
statistically determine if our current practices are
clinically based, continued out of proven efficacy, or if
the interventions are continued out of habit. Proven and
improved interventions for symptom treatment and prevention
would be the ideal outcome for this line of research.

Future research should also extend to examine patients
with a functional disability and the services they are
receiving for assistance throughout the course of their
cancer treatment. Evaluation can include if supportive

services are being utilized, what barriers are preventing

81
the utilization of supportive services, and if these
services are formal or informal. Information generated from
this study would determine if patients requiring assistance
with functional abilities are receiving help, and if not,
what barriers are preventing these services. A study of
this nature will help to determine if a patient is receiving
assistance if needed and who provides the assistance, and
then it would use the results to improve the ability of APNs
to connect patients with the needed agencies.
Summary

This study illustrated the wide variety of symptom ,
complaints experienced by colorectal cancer patients at the
time of treatment initiation. This study also described the
ten most frequently occurring symptoms of these cancer
patients, and their perceived average severity. The
findings were consistent in identifying the most frequently
occurring symptoms of patients with a solid tumor or
lymphoma as fatigue, pain, poor appetite, and constipation.
Included in the list of symptoms and consistent with
literature are symptoms related to the chosen treatments for
colorectal cancer. Symptoms such as nausea, diarrhea,
urinary frequency, and vomiting may result from radiation or
chemotherapy treatments.

A patient's mobility was found to be the greatest
indicator of the need for assistance with activities of
daily living and instrumental activities of daily living.

Symptom severity and the patient's age were found to

82
directly impact a patient's mobility. Therefore, it was
found that the severity of the symptoms experienced and a
patient's age impacts mobility, which then impacts ADLs and
IADLs.

As cancer treatment regimens shift from in-hospital
settings to outpatient clinics, responsibility for the day
to day management of patient falls on the family. In order
to assist the patients and families in providing care in
their homes, it is necessary to understand the physical
experience of cancer. This study has described many of the
most frequently occurring symptoms, which have known
etiologies and a manageable level of severity for most
patients. It is with this knowledge that advanced nurse
practitioners can provide anticipatory guidance in the
prevention or early treatment intervention for these
symptoms. Prompt intervention and home management of
symptoms, such as rest periods or scheduled toileting, will
help to diminish the severity of the symptoms and prevent
physical activity impairment..

Advanced practice nurses can provide the needed
comprehensive assessment knowledge, case management skills,
and holistic approaches to health care to respond to the
variety of needs of this cancer population. APNs, as
clinicians, collaborators, advocates, and educators must
position themselves to proactively respond to these needs
and lead other health care professionals in providing

comprehensive care.

LIST OF REFERENCES

LIST OF REFERENCES

American Cancer Society (1996). The_Mg:e_Xgn_Kngw
Ahgnt_gancer [Brochure]. American Cancer Society: Author.

Daut, R.L., 8 Cleeland, C.S. (1982). The prevalence
and severity of pain in cancer. Cancez*_5g, 1913-1918.

Given, B.A., 8 Given, C.W. (1991, September). Family
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proposal submitted to the National Institute for Nursing
Research. Grant #1-R01-NR01915.

Given, B.A., 8 Given, C.W. (1994). Family home care
for individuals with cancer. Qngglggy+_§(5), 77-93.

Hickey, T. (1988). Self-care behavior of older adults.
' (3), 23-32.

Houts, P.S., Yasko, J.M., Harvey, H.A., Kahn, S.B.,
Hartz, A.J., Hermann, J.F., Scheizel, G.W., 8 Bartholomew,
M.J. (1988). Unmet needs of persons with cancer in
Pennsylvania during the period of terminal care. Canggz+
52(3). 627-634.

Jette, A. M., 8 Branc, L. G. (1981). The Framington
disability study. Physical disability among the aging.

American_I9urnal_of_£rexentixe_flealth1_11(11). 1211- 1215-

Kurtz, M.E., Given, V., Kurtz, J.C., 8 Given, C.W.
(1994). The interaction of age, symptoms, and survival
status on physical and mental health of patients with cancer
and their families. Qannszl_li(7), 2071-2078.

Kurtz, M.E., Kurtz, J.C., Given, C.W., 8 Given, B.A.
(1993). Loss of physical functioning among patients with

cancer. A longitudinal view. cancez_2ragtice+_1(4), 275-
281.

Love, R.R., Leventhal, H., Easterling, D.V., 8 Nerenz,

D.R. (1989). Side effects of emotional distress during
cancer chemotherapy. gangez+_§1, 604-612.

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Mor, V., Masterson-Allen, S. I., Houts, P., 8 Siegel, D.
(1992). The changing needs of patients with cancer at home.

CBDQ£Z+_§2(3), 839- -848.

Mor, V., Murphy, J., Masterson-Allen, S., Willey, C.,
Razmpour, A., Jackson, E., Greer, D., 8 Katz, S. (1989).
Risk of functional decline among well elders. Journal_gf
Clinical_Enideniolegxi_12(9). 895- 904-

Orem. D-E- (1991). Nursin91.99nceuts_of_£ractice (4th
ed.). St. Louis, MS: Mosby-Year Book, Inc.

Portenoy, R.R., Miransky, J., Thaler, H.T., Hornung,
J., Blanchi, C., Cibs-Kong, I., Fledhamer, E., Lewis, P.,
Matamoros, I., Sugar, M. A., Olivieri, A. P., Kemeny, N. E., 8
Foley, K.M. (1992). Pain in ambulatory patients with lung
or colon cancer. gangez*_lg(6), 1616- 1624.

Sigurdson, E.R. (1995). Surgical palliation of

colorectal cancer. Current_2roblems_in_£an9921.12(6)248-
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Sinicrope, F.A., 8 Sugarman, S.M. (1995). Role of
adjunctive therapy in surgically rejected colorectal

carcinoma. fiastzgentezglggy*_122(3), 984-993.

Slattery, M.L., Mori, M., Gao, R., Stat, M., 8 Kerber,
A. (1995L Impact of family history of colon cancer on
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cancer. Disease_of_the_Colon_and_Rectum1_38(19). 1053-1058-

Sprangers, M. A., Taal, B. G., Aaronson, N. R., 8 Velde,
A. (1995). Quality of life in colorectal cancer. Stoma vs.

Nonstoma Patients. Dieeases_of_the_Colon_and_Rectum1_38(4i.
361- 369. '

Steele, G. (1995). Colorectal Cancer. In G.P. Murphy,
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Atlanta, GA: American Cancer Society, Inc.

U. 8. Bureau of the Census, Current Population Reports.
(1984L

bx_Ase1_Sex1_and_8acel_1283:2989. (Series p-25. NO- 952)-
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Vinokur, A.D., Threatt, B.A., Vinokur-Kaplan, D., 8
Satariano, W.A. (1990). The process of recovery from breast
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APPENDIX A.

85

UTCSMS APPROVAL For:
18 E)“NR'ES:

JUN 0 5 1995

and MUS! be re .
MSU FAMILY HOME CARE CANCER STUDY :1 months tongovmlfim"

Midi-can Sue Univusay MS

mm CONSENT FOR RESEARCH
Introduction

You are being asked to participate in a research project to study the costs associated with cancer and
the effects of cancer on the lives of patients and their families. The purpose of this march study is
to determine how age. preexisting health conditions. the site and extent of the cancer. and the type of
treatment affects the patient's mental status and ability to perform usual daily activities. In addition.
information concerning the involvement of and effect on patient's families and/or caregivers will be

collected. -

This study is being conducted by Drs. Barbara and Charles Given who are professors in the College
of Nursing and the Department of Family Practice at Michigan State University. This study is being
sponsored by Michigan State University and also involves other hospitals or medical centers. This study
will involve 1235 patients 65 years of age and older who have breast. colon. lung or prostate cancer.

Description of Procedures

Should you decide to participate you will be contacted by telephone four times over the next 12 months;
at approximately 4. 12, 24 and 52 weeks following your diagnosis. The trained interviewer who will
call you will ask you a number of questions about your health and how you are feeling. the types of
activities you are able to perform for yourself and those with which you need help. and about your
current financial status. It will take about 45-60 minutes to complete each interview. In addition. a
written questionnaire will be sent to you with a stamped return envelope. This questionnaire will ask
questions regarding your physical functioning. use of services. and out of pocket and related costs for
cancer care. The questionnaire will take about 15-20 minutes to complete.

During the interview. you will be asked for the name and telephone number of the person who assists
most with your care. This person will be contacted by telephone and asked the same types of questions
as described above and to fill out and return a similar written questionnaire. This person will be
contacted at the same times as you; at approxirnateiy 4, 12, 24 and 52 weeks following your diagnosis.

In addition. a member of the research staff will review pan of your current medical record to obtain
a list of your medical diagnoses/problems. and treatment(s) you are receiving for your cancer or other
health problems. lnforrnation will also be obtained from the Health Care Financing Adminisrration and
other health insurers. This information will include admissions to hospitals. nursing homes and/or home
care agencies, how long you received care in each of these, and the amount of money paid by Medicare
for these services.

Up; \PT-MSU

86

Risks and Discomforts

It is not expected that you or your caregiver will be placed at any physical. financial or legal risk as
a result of participation in this study. Regardless of whether or not you choose to participate in this
study. you will continue to receive medical care under the direction of your personal physician(s). All
information collected for this study including that obtained from your caregiver. your medical record.
the Health Care Financing Administration. interviews and questionnaires will be kept strictly
confidential.

It is recognized thatthediagnosisand ueatmentofcancer issuessful. lnover400cancerpatients. the
investigators have found no patient to date who experienced additional stress as a result of responding
to similar interview questions or written questionnaires. All interviewers for this study will be trained
by the investigators. and will be able to assist you if you should find any aspect of this sntdy upsetting.
In addition. you are free to withdraw from this study at any time for any reason without penalty or
change in the quality of medical care which you receive. If you have any questions or wish to withdraw
from the sntdy you may call either the project coordinator or Charles W. Given. the CocPrincipal
Investigator. at the research office: (517) 353-3843 or toll free. 1-800-654-8219. -

Benefits

lt is n0t expected that you or your caregiver will experience any direct benefit from participation in this
study. Information from this study may provide useful information concerning the personal and
financial impact of the diagnosis and treaunent of four common cancers among the elderly. Neither you
nor your caregiver will be paid or receive any other form of compensation for participating in this
Study.

Alternatives

If you decide not to participate in this study you will continue to receive all medical care and other
forms of support. Neither you nor your caregiver will be contacted for telephone interviews or asked
to complete questionnaires. ln addition. information will not be collected from your medical record or
the Health Care Financing Administration.

Rights and Responsibilities

To take part in this study. you must choose to do so and sign this form on the line below. Only
volunteers will be used in this study. If you choose to be in the study now. you may withdraw later
on by calling Dr. Charles W. Given at (517) 353-3843 or toll free. 1-800-654-8219. If you choose not
to take part in this study. or if you withdraw after you have started. you will nOt be penalized in any
way. nor will the quality of care you receive be affected. The investigators will keep you informed of
any new developments that may affect your willingness to continue taking part in this study.

up \fl-HSU

87

A record of your progress while on the study will be kept in a confidential file at College of Nursing
at Michigan State University. Only a few people who work on the study will have access to records
that could directly or indirectly identify you. Information about your participation in this study will be
combined with that“ of all other patients who participate in the study and may be shared with others in
the research field. but no names will be used. There will be no names or Other patient identification
used in any study reports published later on.

In the unlikely event of any injury from the research. no reimbursement. compensation or free medical
treatment is offered by Michigan State University. Your hospital and/or medical care will continue
under the direction of your physician. in accordance with your own particular futancial arrangements.

Should you have any questions about your rights as a subject or should you sustain any injury related
to the research. you may contact Dr. David Wright. Chair. University Committee on Research
Involving Human Subjects. at (517) 355-2l80.

l have had an opportunity to ask questions about the sntdy and was given sufficient time to consider my
participation. 1 have received a copy of this form and agree to participate.

 

 

 

 

 

 

 

 

Patient’s Signature Date Time

Please print:

name

address

phone ( )

Investigator‘s Signature ' Date Time
Witness‘ Signature Date Time

 

 

up. \I’T-MSU

APPENDIX B

88

THIS Dracct EXPIRES

JUN 0 5 1995
“a“... Sun 0mm" 9’93 and Must be tent.

ll . Within
MSU FAMILY HOME CARE CANCER sruov "‘°""‘5 '0 comma

W CONSENT FOR RESEARCH

Introduction

You are being asked to participate in a research project to study the costs associated with cancer and
the effects of cancer on the lives of patients and their families or caregivers. The purpose of this
research study is to determine how age. preexisting health conditions. the site and extent of the cancer.
and the type of treatment affects the patient’s mental status and ability to perform usual daily activities.
In addition. information concerning the involvement of and effect on patient's families or caregivers will
be collected.

This study is being conducted by Drs. Barbara and Charles Given who are professors in the College
of Nursing and the Department of Family Practice at Michigan State University. This research sntdy
is being sponsored by Michigan State University and also involves other hospitals or medical center.
This study will involve 1.235 patients 65 years of age and older who have breast. colon. lung or
prostate cancer.

Description of Procedures

Should you decide to participate you will be contacted by telephone four times over the next 12 months;
at approximately 4. 12. 24 and 52 weeks following your friend or family member's diagnosis. The
trained interviewer who will call you will ask a number of questions about your health. how you are
feeling. the types of activities you help your friend or family member perform. and the amount of time
and money you spend in caring for this person. It will take about 45-60 minutes to complete each
interview. In addition. a written questionnaire will be sent to you with a stamped return envelope. This
questionnaire will ask questions regarding the assistance you provide to your friend or relative and will
take about 15 minutes to complete.

Risks and Discomforts

It is not expected that you or your friend or family member will be placed at any physical. financial or
legal risk as a result of participation in this study. Regardless of whether or not you choose to
participate in this study. you and your friend or family member will continue to receive medical care

. under the direction of his/her personal physi_cian(s). All information collected for this study including
that obtained from your friend or family member will be kept strictly confidential.

It is recognized that the diagnosis and treatment of cancer is stressful. In over 400 cancer patients. the

.1. \CG-MSU

APPENDIX C

 

munch!)
nxsnnnant

luuaqMSnunuw
unsnmumwanmw
Mam

IGUeMIMmheaun
adammwwnmwm

89
MICHIGAN STATE

UNIVERSITY

 

February 13. 1997

TO: Barbara A. Given
A230 Life Sciences

RE: IRE“: 97-032
TITLE: COLORECTAL CANCER: TEE SYMPTOMS EXPERIENCED AND
HOW THEY AFFECT THE PATIENT‘S FUNCTIONING
ABILITY
REVISION REQUESTED: N/A
CATEGORY: l-E
APPROVAL DATE: 02/11/97

The University Cot-aittee on Research Involving Human Subjects' (UCRIBS)
review of this project is complete.. I am pleased to advise that the
rights and welfare of the human subjects appear to be adequately

rotected and methods to obtain informed consent are appropriate.
Therefore. the UCRIBS approved this project and any revasions listed
above.

IIIIIIL: ucnrns approval is valid for one calendar year. beginning with

the approval date shown . Investigators planning to

continue a project be one year must use the green renewal

form (enclosed with e original a roval letter or when a

progect is renewed) to seek u te certification. There is a
maximum of four such expedite renewals ssible. Investigators
wishi to continue a project beyond tha time need to submit it

again or complete review.

RIVIBIOIB: OCRIHS must review an as in rocedures involv

chang ing human
subjgcts. rior to inItiation of e change. If this is gone at
the o

ime o renewal, please use the een renewal form.

in r t a descri tion of the an revised
mate's“ P Y

Should.either of the following arise during the course of the
York, ingestigatorgfuugt noti ' t ) . 1
unexpec e si e e ec a comp ain s, c. invo ving uman
subjects or (2) changes in 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, please do not hesitate to contact us
at (517)355-2180 or FAX I517I4 2-

171.
Sincerely.
2219):: . Ph . D.
U 135 Chair
DEN: d

 
  
 

c: Pamela J. Chuey

revise an approved protocol at an 0 er time during the year
send your written request to the_ CRIBS Chair, requesting rev
approval and referencang the project's IRE fl and title. Include

e
ts. consent forms or advertisements that are applicable.

UCRInSepromptly: (1) roblems

APPENDIX D

90

 

 

 

 

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APPENDIX E

N2. ..

94

-1 Raw: I PA‘IIUT w/o m mum

‘rho noxt sot of quostions asks about your ability to pox-tom activitios. I will stato an
activity and than road tho dotinition hototo I as): you quostions rogarding tho activity.

1)

Actifitiesofbailyljving

DRESSING: This catogory includos tho ontiro procoss of drossing or hoing clothod,
including chango gm bod clothing into tho sot of clothing worn during tho day.
and change SQ hod clothing at night. this catogozy 00:3 1301' includo managomont
of clothing during toil-tins W
m. ' Soloct tho catogoty that host doscrihos you: lovol ot functioning

for 02338100.
la. 00-00 months age. with rogard to drossing. would you say you ... (chock 000)

m: mnmm -— (did not nood holp of anothor poi-son in any part of
this activity) (1)

mm 8014! PSYSICM. mp - (roguirod physical holp and tho prosonco of anothor
during all or part of this activity) can: “CIPIm PARTICIPATE)! (2)

mm mm MIC”. m2 -— (noodod anothor porson to carry out this activity)
C133 “C121!!! DID no: 9112161211! (3)

mom“): (4)
_In/nmstn (9)

lb. Currantly. with rogard to drossing. would you say you ... (chock ono)

m 1103mm (Go to quostion 2) (l)
m son 3828101. mp (60 to 1:) (2)
TOTAL PHYSICAL ms (00 to lc) (3)
m am 0288829 (60 to 1) (4)
Ill/RINSE!) (9)

~||l||
I

10. tho toason to: this holp rolatod to (chock ono)
Cancot or cancor troatmont (Go to 1d) (1)

__ Othor hoalth prohlomh) (Go to ld) (2)
__ ill/Rotusod (9)

1d. If. somoono holps you with drossing. who holps (chock all that apply)

primary carogivo: (1) (Go to lo) unpaid family (5) (Go to 12)

paid family (2) (Go to lg) unpaid {tionds/othots (6) (Go to If)
paid trionds/othors (3) (Go to lg) unpaid protossional (7) (Go to if)
paid protossional (4) (Go to lg) minotusod (9)

10. It tho primary carogivor holps with drossing . . .

(1) In tho past wook. how many timos did ho/sho holp with d:ossing?
(writs in)

Timos pot woo):

95

an...) .1: Han I Patna-r w/o Cancun rm: ID lnrr

(2) Approximatoly how long in minutos oach tins did h0/aho holp with
drssoing? (writs in)

Iinutss oach tins

 

(Intorviowor: It patisnt dossn't know, than ask than to sstimats as host thoy can.)

1:. It othor unpaid holpors (tuily. trisnds. or protsssionals) holp with drossing ...

(1) In tho past wosk. how nany timss did thsss unpaid othors holp with
drossing? (writs in)

rinss porwoak

 

(2) approainatsly how long in ninutos oach tins did thoss unpaid othors holp with
drossing? (writs in)

linutos oach tins

 

(Intorviswor: It patisnt doasn't bow. than ask than to sstinats as host thoy can.)

1g. It othor paid holpors (tanily. trionds. or protossionals) holp with drossing . ..

(1) In tho past wook. how many timss did thsss paid othors holp with
drsssing‘! (writs in)

Timosporwsok

 

(2) Lpproudnatoly how long in minutos oach tins did thoss paid othsrs holp with
drossing? (writs in)

Iinutss oach tins

 

(Intorviswor: It patisnt dossn't know thsn ask than to ostinats as host thoy can.)

2) um: This catogory includos all typos of lood and liquid taksn by mouth. this includos
all typos ot prosontation usod - tray, tingor toods. otc.: you do not nosd to uss
utonsils. This doss not includs solsction or prsparation of food.

2a. ‘rhrso months ago. with rsgard to sating. would you say you .... (chock ono)

In! IDIPIIDIII - (did not nood holp of anothsr psrson in any part of
this activity) (1)

mm 8m PHYSIQL BLP - (roquirsd physical holp and tho prsssncs of anothsr
during all or part of this activity) CARI “CIPIINI PARIICIPAIID (2)

)1sz TOTAL PHYSICAL EILP - (nosdsd anothsr psrson to carry out this
activity) cur “CIPIm DID NOT PARTICIPATE (3)

m APPLICABLE (noodod tuho foodings. IV's OIL!) (4)

“IN” (9)

96

WmnIme/omm ID_____/M_
Din _ _/__ _I_ _
2h. mrrsntly. with rogard to sating. would you say you . .. (chock one)

an: murmur (Go to guostion 3) (1)
am SO“! PHYSICAL mp (60 to 20) - (2)
TOTAL rmxcu. mp (60 to 20) (3)
m APPLICABLE (60 to 3) (0
WM!) (9)

20. Is tho rsason tor this holp rslatsd to ... (chock one)

Cancsr or canoor trsatnsnt (Go to 2d) (1)
Othor hoalth prohl-(s) (Go to 2d) (2)
mutusod (9)

"III
N

2d

sonsons holps you with oating. who holps ... (choc): all that apply)

prinary carsgivor (1) (Go to 20) unpaid tuily (5) (Go to 2t)

paid family (2) (Go to 2g) unpaid trionds/othors (6) (Go to 2t)
paid £rionds/othsrs (3) (Go to 2g) unpaid protossional (7) (Go to 22)
paid protossional (4) (Go to 2g) Wlstussd (9)

20. It tho prions-y carogivor holps with sating ...

(1) In tho past wook. how nsny timss did hs/sho holp with sating?
(writs in)

 

rimss psrwssk

(2) Lpproudnstoly how long in minutss oach tins did hs/sho holp with
looting? (writs in)

Iinutss oach tins

(Intorviowor: It pationt doosn't know. thsn ask than to ostimats as host thoy can.)

21. If othor unpaid holpors (tanily. trisnds. or protossionals) holp with oating . . .

(1) In tho past wsok. how any tinss did thoss mpaid othsrs holp with
oating? (writo in)

rimss . psr woo):

(2) Approximatoly how long in ninutos oach tins did thoss unpaid othors holp with
oating? (nits in)

Kinutos oach tins

(Intsrviowor: If pationt dossn't now. than as): than to ostimats as host thoy can.)

(60 TO NEXT PAGE)

9'7

NINE/RC1 Hm: I Pinon u/o Cancun Trim ID _ [new

3)

2g. If othor paid holpsrs (family. frisnds. or profossionals) holp with oating .. .

(1) In tho past wook. how any tinas did thoss paid othors holp with
sating? (writs in)

Timos par wook

(2) Approninatoly how long in ninutos oach tima did those paid othors holp with
oating? (writs in)

Iinutos oach tins

(Intsrviowsr: If pationt doosn't know than ask than to ostinato as'host thoy can.)

arm: This catsgory includos all activitiss of bathing. whsthor tub or shows: or had

hath. such as sntry into tub or showor. wotting. soaping. rinsing. oxiting.
drying body. This doos not includs washing of hood. drying hair. nor drossing
or undrsssing. Solsct tho rssponso that host doscrihos your lsvsl of functioning
for bathing.

3a. Thrso nonths ago. with rogard to bathing. would you say you (chock ons)

In! IIIDIPIIIDIIT - (did not mad holp of anothsr psrson in any part of this
activity) (1)

m SCI! PETSICAL BLP - (roguirsd physical holp and tho prsssncs of anothsr
during all or part of this activity) CAI! llCIPItlT PARTICIPATE (2)

m TOTAL PHYSICAL m — (nosdsd anothsr psrson to carry out this activity)
CAI! 23mm DID no: amount (3)

_ WW (9)

3h. Currantly. with rogard to hathing. would you say you ... (chock ons)

3c.

3d

All murmur (Go to gusstion 4) (1)
an son PETSICAL III-P (Go to 30) (2)
sun roux. mum ms (60 to 3C) (3)
almost): (9)

Is tho roason for this holp rolatod to ... (chock ons)

Cancor or cancor troatnont (Go to 3d) (1)
Othor hsalth prohlsn(s) (Go to 3d) (2)
Wnofusod (9)
If sonoons holps you with bathing. who holps ... (chock all that apply)

primary carogivor (1) (Go to 3s) unpaid family (5) (Go to 3f)

paid family (2) (Go to 3g) unpaid frisnds/othors (6) (Go to 32)
paid frionds/othors (3) (Go to 3g) unpaid profosaional (7) (Go to 3f)
paid profossional (4) (Go to 39) RA/Rofusod (9)

98

NIKE/mu wan I PAflm u/o Cancun m ID _ [m

30. If tho primary carogivor holps with bathing . . .

(1) In tho past wook. how my tinss did ho/sho holp with bathing?
(writs in)

Tinos por wssk

(2) Approxinatoly how long in ninutos oach tine did ho/ahs holp with
bathing? (writs in)

linutas oach tins

 

(Intarviawar: If pationt doosn't know. than ask than to ostinats as host thoy can.)

3f. If othor unpaid holpsrs (fanily. frisnds. or profsssionals) holp with bathing .. .

(1) In tho past wook. how nany timss did thoss unpaid othors holp with
bathing? (writs in)

__-__ Timss par wsok

(2) Approxinatoly how long in ninutos oach tins did thoss unpaid othors holp with
bathing? (writs in)

Iinutss oach tins

 

(Intorviowar: If pationt doosn't bow. than ask than to astimato as host thoy can.)

3g. If othor paid holpars (fanily. frisnds. or profossionals) holp with bathing .. .

(1) In tho past wook. how nany tinss did thoss paid othors holp with
bathing? (writs in)

Tinas par wssk

(2) Approxinatsly' how long in ninutos oach tins did thoss paid othors holp with'
bathing? (writs in)

Iinutos oach timo

(Intsr'viswor: If pationt doosn't know than ask than to ostinats as host thoy can.')

(GO TO NEXT PAGE)

99

81.0.... 0.1 an: I Paras: u/o Calm m ID [INT

05:17: _I_ _
4) WALKING IRSIDE m 8008:: This catsgory includos all upright novsnant on foot ovor tho

floor insido tho houso. HOST nova AT LEAST PM PEST. Kay usa
cans. walkor. crutchas. or handrail. Sslsct tho rosponso that

host doscribos your lsvsl of functioning for walking insido tho.
houso.

4a. Thrso nonths ago. with rogard to walking insido tho houso. would you say you ...
(chock ono)

_ In: IIIDIPIIDUT — (did not nood holp of anothsr psrson in any part
of this activity) (l)

m. SOI! PHYSICAL m2 - (roguirsd physical holp and tho prosancs of anothsr
during all or part of this activity) CAP! RICIPIINT PARTICIPATE (2)

mm mm PSTSICAL SILP - (nosdsd anothsr psrson to carry out this activity)
CA3! neuron-r DID m PARTICIPATE (3)

m man T0 “In! - (would not boar night) (4)

mm (9)

4b. cirrsntly. with rogard to walking insido tho houso. would you say you ... (chock ono)

All mun-m (Go to quostion S) (l)
8” 9878101. nu (Go to 40) (2)
TOTAL PETSICAL In: (Go to 4C) (3)
AR! mam T0 In: (Go to 5) (4)
film (9)

40. Is tho roason for this holp rolatod to ... (chock ono)

Cancor or cancor ~troausnt (Go to 4d) (3.)
_ Othor hoalth prohl-(s) (Go to 4d) (2)
_ WRofussd (9)

4d. If sonoono holps you with walking insido tho houso. who holps
(chock all that apply)

prinary carogivor (1) (Go to 4o) unpaid fanily (5) (Go to 4f)

paid fanily (2) (Co to 4g) unpaid frisnds/othors (6) (Go to 4f)
paid friands/othsrs (3) (Go to 4g) unpaid profsssional (7) (Go to 4f)
paid profsssional (4) (Go to 4g) RAIRsfussd (9)

4o. If tho prinary carogivor holps with walking insido tho house .. .

(1) In tho past wook. how nany timos did ho/shs holp with walking insido tho houso?
(writs in)

Tinos par was):

(2) Approximatoly how long in minutos oach tins did ho/sho holp with walking insido
tho housa? (writo in)

hinutos oach tine

(Intorviowor: If pationt doasn't know. than ask than to ostinato as host thoy can.)

100

stun/n0: law: I Pinon w/o Cancun Tm ID . [INT

4f. If othor unpaid holpors (fanily. friands. or profosaionals) holp with walking insido
tho houso ...

(1) In tho past wook. how many timas did thoss unpaid othors holp with walking
insido tho houso? (writs in)

Tinos par wook

 

(2) Approximatoly how long in minutoa oach timo did thoss unpaid othors holp with
walking insido tho houso? (writs in)

llinutss oach tins

(Intarviowor: If pationt doosn't know. than ask than to ostinato as host thoy can.)

4g. If othor paid holpors (family. frisnds. or profossionals) holp with walking insido
tho houso ...

(1) In tho past wook. how many tinss did thoss paid othors holp with walking
insido tho houso? (writs in)

Timss par wook

(2) Approninatoly how long in minutos oach tins did thoss paid othors holp with
walking insido tho houso? (writs in)

 

- linutos oach tins

(Intarviswor: If pationt doosn't know than ask th- to ostinats as host thoy can.)

5) mm: This catsgory includos: gotting to and fron tho toilst (or usa of toilsting
oguipmont such as hsdpan). ruoval and adjustmsnt of clothing. positioning on
toilst. clasning of body parts. and rsplaconont of clothing. This doas not
includs assistanco hocauso of incontinonco of bowol or hladdor. Soloct tho
rosponso that host dsscribos your lsvsl of functioning for toilsting.

Sa. Throo months ago. with rogard to toilsting. would you say you ... (chock ono)

In! non-nu- — (did not nood holp of anothsr psrson in any part
of this activity) (l)

BEE sour PHYSICAL EILP - (rsguirod physical holp and tho prosonco of anothsr
during all or part of this activity) CARS RSCIPIET PARTICIPATE (2)

HIDE TOTAL PHYSICAL EILP - (noodod anothsr psrson to carry out this activity)
CAR! “CIPIEIT DID NOT PARTICIPATE (3)

NOT APPLICADL! - (had catbotor. colostony) (4)

XA/RIWSID (9)

101

alum/3:01 win I Panza-r w/o Caarcrvra Trip-ow: ID _ _ _ _IINT
Dun:__,__/_____/__‘__
Sb. Currantly. with rogard to toilsting, would you say you ... (chock ono)

ARE INDEPENDENT (Go to gusstion 6) (l)
m sou: PHYSICAL m (00 to SC) (2)
m TOTAL PHYSICAL III-P (GO to SC) (3)
NOT APPLICAILI (GO to 6) (4)
IAIRIPDSED (9)

"lllll
C

50. tho roason for this holp rolatod to ... (chock ono)
Cancor or cancor traatmant (Go to 5d) (1)
Othor hoalth problom(s) (Go to 5d) (2)
lA/Rofusod (9)

5d. If somaono holps you with toilsting. who holps ... (chock all that apply)

primary carogivor (1) (Go to So) unpaid family (5) (Go to Sf)

paid family (2) (Go to 5g) unpaid friands/othsrs (6) (Go to Sf)
paid frisnds/othors (3) (Go to 5g) unpaid profsssional (7) (Go to Sf)
paid profsssional (4) (Go to 5g) RA/Rofussd (9)

So. If tho primary carogivor holps with toilsting ...

(1) In tho past wook. how'many timos did ha/sha holp with toilsting?
(writs in)

Timos par wook

 

(2) Approximatoly how long in nanutos oach tima did ha/sha holp with
toilsting? (writs in)

Iinutss oach tima

 

(Intorviowar: If pationt doosn't know; than ask than to sstimats as host thoy can.)

Sf. If othor unpaid halpors (family. frisnds. or profossionals) holp with toilsting ...

(l) In tho past wook. how many timos did thoss unpaid othors holp with
toilsting? (writs in)

Timos par wook

 

(2) Approaimatoly how long in minutos oach tima did thoss unpaid othors holp-with
toilsting? (writs in)

linutss oach tima

(Intsrviowor: If pationt doosn't know. than ask than to sstimats as host thoy can.)

(60 TO um PAGE)

102

NINA/m mm: I Parry: w/o Caancrvra Trusses: ID

6d. If somaono holps you with transforring in and out of bad. who holps ...
(chock all that apply)

print? “not”: (1) (co to 60) unpaid family (5) (00 to St)

paid family (2) (Go to 6g) unpaid frionds/othars (6) (Go to 6f)
paid trim/othors (3) (Go to 6g) unpaid profsssional (7) (Go to 6f)
paid Dmfossional (4) (Go to 6g) NA/Rofussd (9)

60. If tho primary carogivor holps with transforring in and out of bad ...

(1) In tho past wook. how many timss did hs/sho holp with transforring in and out
of bod? (writs in)

Timos par wook

 

(2) Appraimatoly how long in minutas oach tima did ho/oho holp with transforring
in and out of had? (writs in)

linutss oach tima

 

(Intsrviowor: If pationt doosn't know. than ask than to sstimats as host thoy can.)

6!. If othor unpaid halpors (fanily. frisnds. or profsssionals) holp with transforring
in and out of had ...

(1) In tho past wook. how many timss did thoss unpaid othors holp with transforring
in and out of bad? (writs in)

Timos porwook

 

(2) Approaimatoly how long in ninutsa oach tins did thoss unpaid othors holp with
transforring in and out of had? (writo in)

Iinutos oach tima

 

(Intsrviswor: If pationt doosn't know. than ask than to sstimats as host thoy can.)

69. If othor paid halpors (fanily. frisnds. or profsssionals) holp with transforring in
and out of had ...

(1) In tho past wook. how many timos did thoss paid othors holp with transforring
in and out of had? (writs in)

Timos par wook

 

(2) Approacimatoly how long in minutas oach tima did thoso paid othors holp with
transforring in and out of had? (writs in)

Kinutss oach tima

 

(Intorviswor: If pationt dossn't know than ask than to astinato as host thoy can.)

103

anal/N0: Haw: I Patna-r w/o Ciancxvaa Turnout: ID [INT

5g. If othor paid halpors (family. frionds. or profsssionals) holp with toilsting ...

(1) In 0'. past wook. how many timss did an.“ paid othors holp with
toilsting? (writs in)

Timosporwook

(2) Approximatoly how long in minutas oach tins did thoso paid othors holp with
toilsting? (writs in)

Iinntas oach tima

 

(Intorviswor: If pationt doosn't know than ask than to sstimats as host thoy can.)

6) TRARSPIRRIRG I)! AID OUT OP BED: This catsgory includos movomant to and from bad. to
chair or whoolchair. sticss. bars. and othor
mochanical aids may ho usod. Ssloct tho rosponso that
host doscribos your lsvsl of indopandoncs.

6a. Throo months ago. with rogard to transforring in and out of had. would you say you
(chock ono)

REE mm -— (did not nood holp of anothsr psrson in any part
of this activity) (1)

EEE sour PITSICAL EILP - (roquirod phylical holp and tho prosonco of anothsr
during all or part of this activity) CARE RECIPIET PARTICIPATE (2)

REEE 1on1. MICAL EELP - (nosdsd anothsr psrson to carry out this activity)
CARI RICIPIET DID DOT PAHICIPATI (3)

2mm sanras'r (4)

mm (9)

6h. Currantly. with rogard to transfarring in and out of bod. would you say you
(chock ono)

m murmur (Go to motion 7) (1)
sun sour moron. can: (to 00 6c) (2)
max. vmrcax. an: (00 to 60) (3)
m axons: (to to 7) (4)
almost): (9)

60. Is tho roason for this holp rolatod to (chock ons)

Cancor or cancor 'troatmant (Go to 6d) (1)
Othor hoalth problam(s) (Go to 6d) (2)
RA/Rofusod (9)

(GO TO NEXT PAGE)

28

104

arm/s01 win I Parrmn' w/o Cam Tm ID lnrr

Instrumental Activitia of Daily Living ——————
7) mason-anon

7a. Three months ago. with regard to getting to places outside of walking distance. i.e..
going to the doctor's or grocery shopping away from your neighborhood . .. (check one)

In! IlDEPEDEIT - (did not need help of another person) (1)

IEEE SDPERVISIOI - (required supervision and the presence of another
during all or part of this activity) (2)

IIEE SCI! PETSIQL EILP - (needed another person to help drive occasionally) (3)
m TOTAL PHYSICAL m - (needed others to drive) (4)
DOT APPLICADLE - (others have always done this) (9)

mm (9)
7b. Currently. with regard to getting places outside of walking distance. i.e.. going to
the doctor's or grocery shopping away from your neighborhood ...

an manna-r (co to question a) (1)
am mm: (00 :0 10) (2)

sun can pmxcu. m (00 00 10) (3)
mmmnam (000010) (0
no: APPLICAILR (00 to s) (5)
IA/Rofusod (9)

70. Is this due to your ... (chock one)

Cancer or cancer treatment (Go to 7d) (1)
Other hoalth prohlam(s) (Go to 7d) (2)
lA/Refusod (9)

7d. If someone helps you with transportation (check all that apply)

primary caregiver (1) (Go to 7s) unpaid family (5) (Go to 7f)

paid family (2) (Go to 7g) unpaid friends/others (6) (Go (:0 7f)
paid friends/othors (3) (Go to 7g) unpaid professional (7) (Go to 7f)
paid professional (4) (Go to 7g) RA/Rofused (9)

7e. If the primary caregiver helps with transportation . ..

(1) In the past wook. how many times did he/sho help with transportation?
(write in)

Times per week

 

(2) Approximately how long in minutes each time did ha/she help with
transportation? (write in)

Kinutes each time

 

(Interviewer: If pationt doesn't know. then ask them to estimate as best they can.)

lib.

 

 

105

m; c... Hm: I Danni-r u/o Cannons: mum ID

7!. If other unpaid helpers (family. friends. or professionals) help with
transportation . ..

(1) In the past week. how any tines did these unpaid others help with
transportation? (write in)

Times per week

 

(2) Approximately how long in minutes each time did these unpaid others help with
transportation? (write in) °

linutes each time

 

(Interviewer: It patient doesn't know. then ask then to estinate as best they can.)

79. If other paid helpers (ta-ily. friends. or professionals) help with
transportation . . .

(1) In the past week. how many times did these paid others help with
transportation? (write in)

Times per week

 

(2) Approxinately how long in ninutes each tine did these paid others help with
transportation? (write in)

Iinntes each tine

 

(Interviewer: It patient doesn't know then ask then to estimate as best they can.)

8) mm!!!

8a. Three months ago. with regard to laundry. would you say you ... (check one)

ms murmur - (did not need help of another person in any part
of this activity) (1)

mm son MIC”. nu - (required physical help and the presence of another
during all or part of this activity) can: RECIPIENT PARTICIPATE (2)

MID TOTAL PETSICM. mp - (needed another person to carry out this activity)
cans RBCIPIUT DID [OT DARTICIPAT! (3)

arms an ALWAYS DON! ms (4)

n/nmsrn (9)

8b. currently. with regard to laundry. would you say you . .. (check one)

All! murmur: (Go to question 9) (l)
NEED 3014! PHYSICAL mp (60 to CC) (2)
warn TOTAL PHYSICAL HELP (Go to 8c) (3)
arms HAVE ALWAYS DONE THIS (60 to BC) (4)
NAIREYUSED (9)

106

mine]: Hm: I Plum w/o Cancun m ‘ ID [m

8c. Is this due to your (check one)

Cancer or cancer treauent (Go to 8d) (1)
Other health probl-(s) (Go to 8d) (2)
Ill/Refused (9)

8d. If someone helps you with laundry (check all that apply)

primary caregiver (1) (Go to Ca) unpaid fanily (5) (Go to If)

paid family (2) (Go to 8g) unpaid friends/others (6) (Go to at)
paid friends/others (3) (Go to 8g) unpaid professional (7) (Go to at)
paid professional (4) (Go to lg) Ill/Refused (9)_

8e. If the primary caregiver helps with laundry ...
(I) In the past week. how many tines did he/she help with laundry? (write in)

Times per week

 

(2) Approximately how long in ninutes each tine did he/she help with laundry?
(write in)

linntes each tine

 

(Interviewer: If patient doesn't know. then ask then to estimate as best they can.)

at. If other unpaid helpers (family. friends. or professionals) help with laundry ...

(I) In the past week. how many times did these unpaid others help with
laundry? (write in)

Times per week

(2) ”proximately how long in ninutes each time did these unpaid others help with
laundry? (write in)

linutes each tine

 

(Interviewer: If patient doesn't how. then ask than to estinate as best they can.)
fig. If other paid helpers (fuily. friends. or professionals) help with laundry . . .

(1) In the past week. how many tines did these paid others help with
laundry? (write in)

 

Times per week

(2) Approximately how long in minutes each time did these paid others help with
laundry? (write in)

Iinutes each tine

(Interviewer: If patient doesn't know then ask then to estinate as best they can.)

107

mine: mm: I PATIII'T w/o Cancun Imam: ID Inn

9) SROPPING: Includes all types of purchases.

9a. Three months ago. with regard to shopping. would you say you (check one)

__ m3 murmur - (did not need help of another person in any part
of this activity) (1)

11mm sac PITSICAI. nu - (required physical help and the presence of another
during all or part of this activity) CAR! ”CIPIIIIT PARTICIPATE!) (2)

IITDID TOTAL PIISICAL mp - (needed another person to carry out this activity)
CAI! nonuni- DID NOT PARTICIPAT! (3)

arms n“ MTS DON! TRIS (i)

WWI!) (9)

9b. currently. with regard to shopping. would you say you ... (check one)

All IRDIPIIDIIT (Go to question 10) (I)
an sour PITSIQI. me (Go to 9:) (2)
am roux. MICAL mp (GO to SC) (3)
arms an arms non THIS (Go to 9C) (4)
WWII: (9)

Hlllll
I

So. this due to your ... (check one)
Cancer or cancer treatment (Go to 9d) (1)
Other health prohl-(s) (Go to 9d) (2)
IA/kefused (9)

“III
N

9d. someone helps you with shopping . . . (check all that apply)
primary caregiver (1) (Go to 9e) _ unpaid fanily (5) (Go to St)
paid family (2) (Go to 9g) __ unpaid friends/others (6) (Go to 9f)
paid friends/others (3) (Go to 9g) _ unpaid professional (7) (Go to 9f)
paid professional (4) (Go to 9g) _ nA/kefused (9)

9e. If the primary caregiver helps with shopping
(1) In the past week. how many times did he/she help with this shopping? (write in)
Times per week

(2) Approximately how long in minutes each time did he/she help with
shopping? (write in)

llinutes each time

 

(Interviewer: If patient doesn't know. then ask _them to estimate as best they can.)

(GO TO NEXT PAGE)

108

RIM/NC]: row: I PATIDIT w/o Cancrvra Turnout: ID In)?

9!. If other unpaid helpers (family. friends. or professionals) help with 81101713139

(1) In the past week. how many times did these unpaid others help with
shopping? (write in)

Times per week

(2) Approximately how long in minutes each tine did these unpaid others help with
shopping? (write in)

linutes each time

 

(Interviewer: If patient doesn't know. then ask then to estimate as best they can.)

99. If other paid helpers (family. friends. or professionals) help with shopping . . .

(1) In the past week. how many times did these paid others help with
shopping? (write in)

Times per week

 

(2) Approximately how long in minutes each time did these paid others help with
shopping? (write in)

linutes each time
(Interviewer: If patient doesn't how then ask them to estimate as best they can.)

10) newsman: This includes picking up. dusting. light cleaning. vacuuming. or doing
dishes.

10a. Three months ago. with regard to housework. 'would you say you ... (check one)

In! INDIPINDRIT — (did not need help of another person in any part
of this activity) (I)

m SOB PETSICAL IILP - (required physical help and the presence of another
during all or part of this activity) CARI RICIPIm PARTICIPATE (2)

.80 TOTAL PHYSICAL BLP - (needed another person to carry out this activity)
CARS RECIPIIIIT DID ROT PARTICIPAT! (3)

arms HAVE Abms DO“ ms (i)

Ill/RHINO (9)

10b. Currently. with regard to housework. would you say you ... (check one)

AR! INDIPIKDUT (Go to question ll) (1)
“ID 80!!! PETSICAL at: (Go to 10¢) (2)
sun TOTAL PETSICAL m2 (Go to 10¢) (3)
arms HAVE ALWAYS DONE TRIS (Go to 10:) (i)
NA/RIPOSED (9)

109
him/m1 Win I Parrot: s/o Cam m ID _ [INT

10c. Is this due to your ... (check one)

Cancer or cancer treauent (Go to 10d) (1)
Other health probl-(s) (Go to 10d) (2)
NAIRefused (9)

10d. If someone helps you with housework . .. (check all that apply)

primary caregiver (1) (Go to Ice) unpaid family (5) (Go to 10f)

paid family (2) (Go to 10g) unpaid friends/others (6) (Go to 10f)
paid friends/others (3) (Go to 10g) unpaid professional (7) (Go to 10f)
paid professional (4) (Go to 10g) flA/Refused (9)

Ice. If the primary caregiver helps with housework .. .
(1) In the past week. how many times did he/she help with housework? (write in)

Times per week

 

A

2) Approximately how long in minutes each time did he/she help with
housework? (nits in)

Iinntes each time

 

(Interviewer: If patient doesn't bow. then ask them to estimate as best they can.)

10f. If other unpaid helpers (family. friends. or professionals) help with housework . ..

(I) In the past week. how many times did these unpaid others help with
housework? (write in) -

Times per week

 

(2) Approximately how long in minutes each time did these unpaid others help with
housework? (write in)

Iinntes each time

 

(Interviewer: If patient doesn't know. then ask them to estimate as best they can.)
10g. If other paid helpers (family. friends. or professionals) help with housework .. .

(I) In the past week. how many times did these paid others help with
housework? (write in)

Times per week

(2) Approximately how long in minutes each time did these paid others help with
housework? (write in)

Minutes each time

 

(Interviewer: If patient doesn't know then ask them to estimate as best they can.)

110

mun/no: um: I Panam- w/o Cassava True-cur ID

11)

COOKING AND 2mm urns

lla. Three months ago. with regard to cooking and preparing meals. would you say you . . .
(check one)
It!!! mum-m - (did not need help of another person in any part
of this activity) (1)
m sour PETSICAL IILP - (required physical help and the presence of another
during all or part of this activity) CARS RECIPIENT PARTICIPATE (2)
m ram. PETSICAL m2 - (needed another person to carry out this activity)
CARE AlCIPIIIT DID IOT PARTICIPATE (3)
OTHERS IA“ ALIATS our an (i)
mm (9)
11b. currently. with regard to cooking and preparing meals. would you say you .. . (check one)
All! man (do to next section) (l)
m sac "TSICAL no (Go to 11:) (2)
m TOTAL PETSICAL m (60 to 11C) (3)
OTHERS IA?! ALIATS noun THIS (Go to 11C) (4)
mm (9)
11¢. Is this due to your ... (check one)
Cancer or cancer treatment (Go to lld) (1)
Other health prohl-(s) (Go to lld) (2)
lA/Refused (9)
lld. If someone helps you with cooking and preparingmeals (check all that apply)
_ primary caregiver (1) (Go to lle) _ unpaid family (5) (Go to llf)
_ paid family (2) (Go to llg) __ unpaid friends/others (6) (Go to llf)
__ paid friends/others (3) (Co to llg) __ unpaid professional (7) (Go to llf)
__ paid professional (4) (Go to llg) _ Ill/Refused (9)
lle. If the primary caregiver helps with cooking and preparing meals . ..
(1) In the past week. how many times did he/she help with cooking and
preparing meals? (write in)
Times per week
(2) Approximately how long in minutes each time did he/she help with
cooking and preparing meals? (write in)
liinutes each time
(Interviewer :

If patient doesn't know. then ask them to estimate as best they can.)

111

urn/we: Ian I Para-r w/o Csarorvn Tucson: ID [INT

11f. If other unpaid helpers (family. friends. or professionals) help with cooking and
preparing meals . . .

(1) In the past week. how many times did these unpaid others help with
cooking and preparing meals? (write in)

Times per week

(2) Approximately how long in minutes each time did these unpaid others help with
cooking and preparing meals? (write in)

Iinutes each time

 

(Interviewer: If patient doesn't know. then ask then to estimate as best they can.)
llg. If other paid helpers (family. friends. or professionals) help with cooking and
preparing meals ...

(I) In the past week. how many times did these paid others help with
cooking and preparing meals? (write in)

Times perweek

(2) Approximately how long in minutes each time did these paid others help with
cooking and preparing meals? (write in)

Iinntes each time

(Interviewer: If patient doesn't know then ask them to estimate as best they can.)

(60 TO m: SECTION)

APPENDIX F

112

2.352. 9:38.. to 9.2.3

 

— N n p N n
. N n _ N n .3333 9.3.; ._
. N n . N a 533.3... 9.222, ...
. N n . N N ...uqaao 95.25 ...
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