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THESIS

MICHIGANS

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This is to certify that the
thesis entitled

Predictors of Physical Functioning in Elderly
Terminally Ill Cancer Patients

presented by

Susan Kay HOppough

has been accepted towards fulfillment
of the requirements for

Masters Nursing

degree in

 

 

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1M animus-nu

 

PREDICTORS OF PHYSICAL FUNCTIONING IN ELDERLY
TERMINALLY ILL CANCER PATIENTS

BY
Susan Kay Hoppough

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

MASTERS OF SCIENCE IN NURSING

College of Nursing

1998

ABSTRACT

PREDICTORS OF PHYSICAL FUNCTIONING IN ELDERLY
TERMINALLY ILL CANCER PATIENTS

BY
Susan Kay Hoppough

For persons with cancer the period prior to death is
often perceived as a time of distress and loss of physical
function with little evidence to either support or refute
this perception. For this study elderly patients during the
first 24 weeks of the descriptive longitudinal study were
assessed in the interview prior to death. Proposed
predictors of loss of physical function include: site and
stage of cancer, age, gender, comorbid conditions, and prior
level of function. Outcome variables include measurements
of physical function.

Significant predictors of physical function in the
period prior to death include site of cancer, gender, and
level of physical function at the time of diagnosis.
Knowledge of these factors can help the advanced practice
nurse develop appropriate interventions for the terminally
'ill elderly cancer patient in maintaining quality of life.
Research implications include the development of a risk
factor profile to provide the delivery of cost effective

care 0

Copyright by
Susan Kay Hoppough
1998

This study is lovingly dedicated to my husband,
John, and my daughters Sarah and Anne without

whose support this would have not been possible.

iv

ACKNOWLEDGMENTS

I want to thank my thesis committee who provided the
technical and expert support needed to complete this
research. To Dr. Barbara Given, my thesis chair, you are
truly inspirational. Thank you for the challenges, for
listening, guiding, sharing, and most of all, trusting in
me. Your high standards are to be commended and applauded.
You are a gifted nurse, researcher, and an outstanding
mentor.

To Dr. Charles Given, thank you for your patience, your
sense of humor, and your insights into the research process.
I am thankful to be part of the research team and to work
with you on a daily basis. I appreciate your demands for
excellence.

To Dr. Sharon King, thank you for being there from the
beginning. As faculty advisor and committee member you
provided me with wisdom, advice, and the support required to

discover the needs of the elderly.

TABLE OF CONTENTS

LIST OF TABLES . . . . . . . . . .
LI ST OF FIGWES O O O O O O O O O 0

INTRODUCTION . . . . . . . .
Background of the problem
Study purpose . . . . . .
Conceptual Definitions . .

STATEMENT OF PURPOSE AND PROBLEMS .
CONCEPTUAL FRAMEWORK . . . . . . .

REVIEW OF THE LITERATURE . . . . .
Patient Characteristics . . .
Age, gender, site and stage of
Comorbidity . . . . . . . . .
Prior Physical Function . . .

METHODS . . . . . . . . . . . .
Research Design . . . . .
Study Sample . . . . . . .
Data Collection Procedures
Validity and Reliability .
Operational Definitions .
Data Analysis . . . . . .
Protection of Human Subjects
Research Limitations . . . .

RESUIJTS O O O I O O O O O O 0
Description of the Sample . .
Answers to Research Questions

DISCUSSION . . . . . . . . . . . .
Sample . . . . . . . .
Functional Levels and Gender .
Functional Levels and Site . .
Functional Levels at Diagnosis

Interview Before Death . . .

Summary of Statistically Significant Predictors

vi

cancer

Compared to

Page
viii

htthH

20
21
21
26
31

36
36
36
38
39
39
46
46
48

64
64
64
65

66

TABLE OF CONTENTS (cont.)

Functional Levels and Age, Stage, Interval Before

Death, Comorbidities . . . . . . . . . . . . . . . 68
Functional Levels and Age . . . . . . . . . . . . . 69
Functional Levels and Stage . . . . . . . . . . . . 70
Functional Levels and Comorbidity . . . . . . . . . 71
Functional Levels and Interval Before Death . . . . 72

DISCUSSION OF RESULTS WITH CONCEPTUAL FRAMEWORK . . . . . 73
Implications for Advanced Practice Nursing . . . . . 74
Implications for Further Research . . . . . . . . . 82

smy O O O O O O O O O O O O O O O O O O O O O O O O O 8 5

LI ST OF REFERENCES 0 O O O O O O O O I O O O O O O O O O 8 9

APPENDICES
Appendix A. Instruments . . . . . . . . . . . . . . . . 94
Appendix B. MSU Family Home Care for Cancer Patient

Consent Form . . . . . . . . . . . . . . 123
Appendix C. UCRIHS Approval for Original amil Home
Care for Cancer--A Community-Based
Model . . . . . . . . . . . . . . . . . 124
UCRIHS Approval for Secondary Analysis . . 125

vii

Table

Table

Table

Table

Table

Table

Table

Table

Table

LIST OF TABLES

Frequencies and Percent of Sample
Sociodemographic Variables . . . . . . . .

ANOVA Model of Independent Variables
Predicting Loss of Physical Function
in Interview Prior to Death . . . . . . . .

SF—36 Physical Function Scores of PF 3M*
and Interview Prior to Death by Independent
variables 0 O O O O I O O O O O O O O O O 0

Numbers and Percent of Patients Reporting
Dependencies in IADL and ADL by Gender . .

Number and Percent of Patients Reporting
Dependencies in IADL and ADL by Age . . . .

Number and Percent of Patients Reporting
Dependencies in IADL and ADL by Site . . .

Number and Percent of Patients Reporting
Dependencies in IADL and ADL by Stage . . .

Number and Percent of Patients Reporting
Dependencies in IADL and ADL by
Comorbidity . . . . . . . . . . . . . . . .

Relationship of SF-36 Limitations with IADL
and ADL Dependencies Reported by Patients .

viii

Page

Figure 1:
Figure 2:
Figure 3:

LIST OF FIGURES

Page
Treatment and Care Processes Model . . . . . . 15
Predictors of Physical Function Model . . . . 17
Predictors of Physical Function Model
(revised) . . . . . . . . . . . . . . . . . . 75

ix

INTRODUCTION

By the year 2030, persons aged 65 and older will
comprise 21% of the population, placing increased demands on
health services (Murphy & Hepworth, 1996). In an attempt to
curtail soaring health care costs, early discharge of
patients to home care settings has shifted increased
responsibilities of care to patients and family members.
Elder cancer patients with complex needs are some of those
experiencing discharge to home care settings with the
responsibility of care often falling on the shoulders of
equally frail spouses. Within this group of elder cancer
patients are those in the terminal phase of their illness -
those patients with a physician-certified prognosis of six
months or less to live (Mor & Masterson-Allen, 1990)-who
have elected to remain at home to die. Services available
to assist terminally ill patients and families are provided
through hospice. Inherent in the hospice philosophy is the
desire to assist the hospice patient and their family
maintain quality of life in their dying days with care that
includes symptom management, teaching, medical, nursing, and
spiritual care (Laferriere, 1995).

It has been estimated that by the year 2030 over 6

million individuals over the age of 65 will have cancer,

1

2
with more than 60% of all cancer deaths occurring in this
age group (Schonwetter, 1996). In 1990 it was estimated
that approximately 17% of deaths occurred_at home with the
group most likely to die at home being those individuals
with malignancies (Schonwetter, 1996). The American
Geriatric Society (AGS), 1997, has suggested the
responsibility for quality of care issues for the terminally
ill patient lie within the health care system. Of the ten
areas designated by the AGS as requiring accountability by
the health care system, one specifically addresses the need
to improve the preservation of physical functioning and
ensuring autonomy, so that individuals might maintain
personal dignity and self-respect (Marwick, 1997). One goal
of advanced practice nursing is to assist the patient attain
to the maximum level of function within their current health
state (Fawcett, Tulman, & Samarel, 1995), therefore,
individualized care of the terminally ill patient must
include strategies that address physical function to improve
quality of life. Determining and predicting levels of
physical function in the terminally ill elder cancer patient
will assist the advanced practice nurse to develop
interventions specifically directed at maximizing and
maintaining the physical function of the patient for as long
as possible, thereby addressing one quality of life issue at

this final phase of life.

Basksznnnd_nf_the_zroblem

While many authors have addressed care of the
terminally ill geriatric cancer patient and quality of life
issues (Schonwetter, 1996; Herbst, Lynn, Mermann, & Rhymes,
1995; Hirsch, 1995; Morrison & Morris, 1995; McMillan, 1996;
Mar 8 Masterson-Allen, 1987; Greisinger, Lorimor, Aday,
Winn, 5 Baile, 1997), others have addressed topics related
to physical function in the geriatric cohort (Gompertz,
Pound, & Ebrahim, 1994; Berkman, Shearer, Simmons, White,
Robinson, Sampson, Holmes, Allison, & Thomson, 1996; Finch,
Kane, 8 Philip, 1995; Van Hook, Berkman, & Dunkle, 1996;
Rueben, Valle, Hays, & Siu, 1995). The relationship between
and of life care and quality of life issues as they relate
to physical function for the geriatric cancer patient in the
period preceding death has received little attention.
W

This study specifically addresses predictors of the
loss of physical function including the site of cancer,
stage of cancer, age, gender interval of time between the
interview and the time of death, comorbid conditions, and
prior physical function of the patient at the time of
diagnosis. The construction of four categories of physical
function in the intermediate period prior to death will be
developed.

Quality of life issues are most important during the
terminal phases of the cancer trajectory. The concept of

quality of life is multidimensional including, physical,

4

social, emotional, and family well-being issues, with cancer
patients reporting being least satisfied with the physical
functional aspects of the concept in the end of_life
(McMillan, 1996). Therefore, it is imperative to predict
components of physical function amenable to interventions in
order to improve the quality of life for the texminall¥_ill
cancer patient. This information can then be used by
advanced practice nurses and other health professions to
predict patient needs and develop interventions specifically
directed at physical function to help quality of life.
W

The following concepts will be studied in relationship
to their impact on physical function prior to death
including: site and stage of cancer; treatment modalities;
comorbid conditions; and prior physical function levels.

Si;e_and_§tage_gf_£ancez. It has been estimated that
as the population ages there will be an increasing need to
provide optimal care for the elderly terminally_111 cancer
patient. Currently, cancers discovered in the elderly are
more likely to be in advanced stages of the disease and more
than 60% of cancer deaths occur in the 12% of the population
over 65 (Schonwetter, 1996).

Patients participating in this study were older adults,
newly diagnosed with cancer as apposed to receiving a
diagnosis of recurrent disease. The diagnosis of cancer,

regardless of site, places the patient within a course of

5
treatment modalities marked by periods of symptom
exacerbation and disability, with increasing dependency
needs in the advanced stages of the disease (Given 8 Given,
1994). With the progression of cancer in the advanced
stages, worsening symptoms influence the social and physical
function of a patient (Kurtz, Given, Kurtz, & Given, 1994).
Terminally ill cancer patients experience less of physical
function from both organ failure and/or symptoms. Organ
failure can cause symptoms leading to loss of control of
bodily functions and with independence and physical
strength.

While cancer patients in the advanced stage of the
disease may have common symptoms, evidence exists that at
earlier stages the symptom profile is site and pattern of
organ involvement dependent (Vainio & Auvinen, 1996). In a
study of the prevalence of symptoms among patients with
advanced cancer (Vainio & Auvinen, 1996), lung and breast
cancer patients experienced at least moderate pain, patients
with gynecological or head and neck cancers experienced
moderate to severe pain, and those with the prevalence of
severe pain highest in prostatic cancers. Gastrointestinal
symptoms were most predominant in colorectal cancers, and
shortness of breath most common in lung cancer. Poor
functional status was most common in gynecological cancers
and the primary sites reporting the highest levels of pain
were also associated with poor functional status (Vainio &

Auvinen, 1996). The symptoms experienced relate to the

6
primary tumor, whiCh must be taken into account when
evaluating the type of services that are most beneficial to
optimizing functional status of a patient. The cancer sites
included in this study are prostate, lung, colon, and breast
cancer. Site and stage of cancer compared to physical
function in the terminally ill cancer patient will be
explored in this research to determine any significant
relationships.

Treatment_ugdalinies. Rather than concentrating on
futile efforts to cure cancer in its final stages, it is the
responsibility of health care providers to deliver
palliative care to the terminally ill in a compassionate
manner (Schonwetter, 1996). Palliative care may include
surgical treatment, chemotherapy, or radiatiOn therapy in an
attempt to alleviate symptoms which may interfere with
physical functioning by virtue of the inherent side effects
of those treatments. While the prevalence of symptoms
treated may vary with tumor site, pain is the most commonly
feared symptom of advanced cancer. Other commonly reported
treated symptoms include dyspnea, nausea and vomiting, and
delirium when death is impending (Vainio 8 Auvinen, 1996).
Therefore, physical function in the terminally ill patient
may be impacted by the treatments given to alleviate
symptoms with poor physical function associated with short
survival rates than better physical function associated with
longer survival rates (Vainio 8 Auvinen, 1996). In the

study by Vainio and Auvinen (1996) the relationship between

7
physical function and short survival rates is unclear,
however, the need for improved comfort measures, symptom
management and skilled home care assistance to the patient
and family is apparent as a integral part of treatment
modalities. While treatment modalities are significantly
related to physical function, they will not be addressed in
this study because of the complexities involved.
Cgmgzh1d_9gnditigns. Chronic diseases such as
hypertension, cardiac disease, diabetes, and arthritis are
examples of comorbid conditions that may contribute to
limitations in physical function in older adults and those
conditions exist even with treatment (Blaum, Liang, 8 Liu,
1994; Yancik, Havlik, Wesley, Ries, Long, Rossi, 8 Edwards,
1996). The existence of comorbid conditions and the life
expectancy of the patient relative to those comorbid-
conditions may influence the type of treatment selected for
the cancer patient. The life expectancy of an individual
can be estimated from life tables and the presence,
severity, or absence of comorbid conditions that may alter
longevity (Fowler, Terrell, 8 Renfore, 1996). The
significance of comorbid conditions in relationship to the
cancer diagnosis is that other compromised organs and
systems may influence the response to treatment modalities.
Results of a study by Satariano and Ragland (1994) suggest
that comorbidity in patients with breast cancer is related
to the risk for death from causes other than breast cancer.

However it is unclear if the comorbid conditions are the

8
cause of death from breast cancer or if the breast cancer
and treatment may accelerate the course of the comorbid
conditions making the risk for death from those conditions
greater (Satariano 8 Ragland, 1994).

The mechanisms affecting the survival rates for women
with breast cancer require further study with evidence
suggesting that comorbidity has an independent effect on the
prognosis for women diagnosed with breast cancer (Satariano,
1993). Clearly, the presence of internal factors, comorbid
conditions, and the medications needed to treat those
conditions place the elder at higher risk for complications
from cancer treatments and may be detrimental to the
overall, quality of life for the individual (Yanick et al.,
1996).

Comorbidity within the larger study is measured through
the extraction of information from medical records and
interview questions. This medical record information was
used to determine if the patient had a current diagnosis of
osteoarthritis or other musculoskeletal disease; peripheral
vascular disease; infectious disease; cardiovascular disease
of any type; and any gastrointestinal disease in a manner
similar to the comorbidity measurements done by Katz, Chang,
Shangha, Fossel, and Bates, (1996). The comorbidity
information was used in the Family Home Care for Cancer-A
Community-Based Model, Grant # R01-NR01915 to determine the

risk for survival within the population studied.

WW. It is the loss of Physical

function and need for personal and physical assistance which
forces caregivers to opt for hospitalization ofdying loved
ones, away from the comforts of home. Function includes the
ability to perform biological, psychological, and social
activities normally expected of an individual at certain
age, and the actual performance of those biological,
psychological and social_activities‘(Fawcett et al., 1995).
Ehxsisal_functign encompasses the ability to, and actual
performance of, activities. An inability to perform an
activity in the manner considered normal is a limitation in
physical function. Function is influenced by internal
factors (symptoms associated with normal life transitions or
chronic disease), external factors (family members or health
care providers ), and cultural factors (beliefs, norms, and
values of a particular group) (Fawcett, Tulman, 8 Samarel,
1995) . W is the “score” by which a patients
physical function abilities can be measured and compared.
Measurements include the SF-36, IADLs, and ADLs.

It is important to differentiate between fungiinnsi
mm and W1 disability when discussing
physical function because it is the disability which leads
to dependence on others in meeting physical and personal
needs. Functional limitation, defined as restrictions in
performing physical activities differs from functional
disability, defined as difficulty in carrying out activities

in any domain of life (Lawrence 8 Jette, 1996; Verbrugge 8

10
Jette, 1994). The_pathway to disability includes pathology
(a cancer diagnosis) which leads to impairment (anatomic or
structural) that in turn leads to functional limitation
(physical or mental), which leads to disability (difficulty
in doing activities of daily living) (Lawrence 8 Jette,
1996). Functional limitations are a driving force in the
disablement process and must be considered in the
development of appropriate interventions. For example, the
lung cancer patient may experience difficulty shopping for
personal items because of shortness of breath (physical
limitation), but may be able to do so with the use of oxygen
and a motorized cart. As the shortness of breath progresses
further limitations may lead to the person shopping less
frequently or not shopping at all (disability).

Knowledge of the patients prior level of physical
function is an essential element in determining the degree
of loss of physical function in the terminal phase of the
elder cancer patient. A greater feeling of loss may be
experienced by those individuals whose prior level of
function had been independent compared to those with already
compromised levels of physical function. Individuals
dependent in levels of physical function prior to the
terminal phase of their illness may already have in place
mechanism to deal with the dependence and therefore not feel

the same degree of loss.

11

The pathway toward disablement and dependency for this
study is measured through the use of the SF-36, IADLs, and
ADLs. The proposed measurement of the progression of steps
leading to disability includes: patients view of the effect
of cancer on their physical function and quality of life
(SF-36); the impact of the cancer on the patients ability to
perform instrumental activities of daily living (IADLs); and
finally, the impact of the cancer on basic activities of
daily living (ADLs). The rationale for measuring all three
levels of functions are to determine if assumptions can be
made about the disability of an individual based on
limitations in physical function.

The SF-36 assesses eight domains of function and well-
being. For the purposes of this study those questions which
assess specifically physical function as a result of
physical health problems (cut down on the amount of time
spent, accomplished less, limited in the kind of work or
other activities done) will be used. Response options for
the questions include a 3-point scale: limited a little,
limited a lot, or not limited at all (Reuben, Valle, Rays, 8
Siu, 1995). The items selected from the SF-36 test
perceived limitations in function that are viewed as
determining quality of life related to physical function
(VanHook et al., 1996), compared to levels of dependencies
determined by the IADLs and ADLs.

The Instrumental Activities of Daily Living (IADL),

measures the ability of a patient to maintain an independent

12
life style by accomplishing a set of complex tasks such as
driving about the community, cooking, doing housework,
shopping, and laundry. The measures include: independent
(requires no assistance); need supervision only (requires
another person present without regular assistance); need.
some physical (the care recipient participates); need total
physical help (care recipient does not participate); and,
others have always done the activity (Allen, Mor, Raveis, 8
Bouts, 1993).

The Activities of Daily Living (ADL) measures basic
activities required to sustain independent living such as
bathing, dressing, eating, and toileting. Again, the
measurement choices include: independent; need supervision
only; need some physical help; or need total physical help.

While physical function may be used as a predictor of
subsequent adverse effects for an individual, a “gold
standard” for measurement of physical function does not
exist. For this reason, the measurement of the complicated
variable of physical function can best be served through the
use of multiple tools (SF-36, ADLs, and IADLs) to avoid the
under- or over- reporting of dependencies for a specific
population (Rueben et al., 1995).

In summary, factors useful as predictors of
disabilities of physical function in the end of life for

cancer patients include the site of the primary tumor,

13
treatment modalities, comorbid conditions, and physical
function measurements. It is important to determine these
factors to develop interventions most beneficial in the
assistance of cancer patients and their families in the
terminal course of cancer. For the purposes of this study

the specific patient characteristics which will be addressed

as Win will include W
ll E l E l'i'l i l

13131—91 m. A limitation of this study will
be that although treatment modalities may be regarded as
significant in the physical function of these patients, the
treatment modalities will not be addressed as predictors.

. Statement of Purpose and Problems

The purpose of this study is to identify factors within
a profile which will predict levels of physical function in
elderly terminally ill patients newly diagnosed with solid
tumors of either breast, colon, lung, or prostate cancer.
Construction of four categories of physical function prior
to death will enable the advanced practice nurse to
correctly identify those elderly terminally ill cancer
patients at risk for dependence, anticipate the needs and
determine appropriate interventions directed at maintaining
physical function for as long as possible. The four
categories of physical function prior to death will include:
1) Independent, 2) Dependent in high level of physical
function- the SF-36 physical function subscale- only, 3)

Dependent in high level physical function (SF-36) and IADL's

l4

and 4) Dependent in high level function (SF-36), IADL's and

ADL's.

Specifically, the research questions to be addressed
for this thesis are:

1. What factors (interval of time between the date of the
interview prior to death and the date of death; age;
gender; prior level of function; site of cancer; stage
of cancer; and comorbidities) predict variations in the
levels of physical function among cancer patients in
the three months prior to their death? A

2. Are there differences in the level of physical function
experienced by males and femaleswith lung or colon
cancer in the months prior to their death?

Conceptual Framework
For the purpose of this study, it will be assumed that
the physical function of cancer patients decreases with
impending death and is influenced by other factors
including: age; gender; site of cancer; stage of cancer;
comorbidity; and functional status prior to diagnosis. This
study is guided conceptually by the Treatment and Care

Processes Model, part of the Family Home Care for Cancer--A

Community-Based Model, supported by grant #ROl-NR01915

(Given 8 Given, 1995).

The Treatment and Care Processes Model identifies
treatment and care processes affecting outcomes of care for
the patients involved (See Figure 1). Significantly, this

model uses a flexible problem-solving approach to deliver

15

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

CAREGIVER CAREGIVER
CHARACTERISTICS PROCESSES OF CARE
-Age -Preparation for Care
-Gender -Caregiver involvement in:
-Marital Status _, -Symptom management including
-Living Arrangements depression & anxiety
-Socioeconomic Status ~Complex medical tasks & procedures
Education -Planning and implementing cancer
treatment tasks
3 \.
CANCER CARE INTERVENTION C AREgISTEggzif'IS'ES
TREATMENT CAREGIVER AND PATIENT -Less Role Overload '
MOD ALITIES PROBLEM SOLVINGREGARDING -Less Caregiver Burden
Chemotherapy only -Symptom management and control -Impmved Mental Health
Chemotherapy plus 9 Education and Information Disease
and "lament PATIENT STATES:
Radiation and/or Counseling and Support #5 4"“)me Performance in:
Hormonal, Biological Coordination of SerVices & Resources -SF 36 Physical Function
-Preparation for Care ' Role Function
\ -IADUADL
‘ -Less Bodily Pain
i -Less Symptom Severity
-Improved Mental Health
USE OF HEALTH CARE SYSTEMS:
i’ (Visits & Phone calls)
-Fewer Re-hospitalizations & lengths of stay
PATIENT PROCESSES -Fewer Problems Reported to:
OF CARE -Oncologist
-Symptoms Management -Primary Care Physician
-Return to Function Emergency Services
-Serv1ce Utilization

 

 

 

 

 

 

 

 

PATIENT STATES:
-Improved Performance in:
PATIENT -SF 36 Physical Function
CHARACTERISTICS Role Function
-Age -IADUADL
(Tender -Less Bodily Pain
-Sltc Of Cancer -Less Symptom Severity
-Stage ofCancer -lmproved Mental Health
Comorbidity
-Prior Physical Function

 

 

Eignrs_1i Treatment and Care Processes Model from grant
#1R01-NR01915, “Family Home Care for Cancer--A Community-
Based Model", funded by the National Center for Nursing
Research, 1989.

16
care. Patient and caregiver characteristics are viewed as
influencing the processes of care with specific needs of the
dyad for assistance from a cancer care intervention (CCI)
identified. Other factors influencing the CCI include the
types of modality used to treat the cancer diagnosis. These
factors (patient and caregiver characteristics, processes of
care, treatment modalities and CCI) influence the outcomes
of care for both the patient and caregiver and determine the
use of the health care system by the individuals involved.
Within this model, patients and caregivers of patients with
cancer require assistance to produce desired outcomes (Given
8 Given, 1995).

Because the focus of this study is on the patient and
not the caregiver only those areas of the conceptual model
which pertain to the patient will be addressed (See Figure
2). Patient characteristics (age, gender, site and stage of
cancer, comorbid conditions, and prior level of function)
may directly influence the patient processes of care (the
symptoms they report, the services they use and their return
to prior function and rehabilitation use). Treatment
modalities impact the patient processes of care. That is,
the reporting of needs related to the treatment or disease
and the way the needs are addressed, affect the quality of
life experienced by the individual. The manner in which the
patients needs are addressed may directly impact their
ability to return to prior levels of physical function (SF-

36, ADLs, and IADLs) or to maintain levels of physical

 

 

PATIENT
CHARACTERISTICS

Age

Gender

Site of cancer

Stage of cancer
Comorbid conditions
Prior level of function

53‘3"?pr

 

 

 

 

 

 

 

l— _________ "I

| Patient Care Processes |
I (Symptom Management) I

17

 

 

PHYSICAL

 

 

Independent

FUNCTION

 

 

 

 

 

 

 
   
  
 

SF-36

 

____\

 

 

 

\
___§

 

 

\,

IADLs

 

 

 

\X
Independenf Repair!“

 

ADLs \

 

___N

 

Independeni
Dependent

 

 

 

 

 

 

 

£ignzs_zc Predictors of Physical Function Model

18

function in the terminal phase of the disease, thus
improving quality of life for the individual (See Figure 2).

The focus of this study will be the patient
characteristics and outcomes of care recognizing that other
factors (processes of care, including treatment) may
influence physical function, but are not included in the
risk factor profile (See Figure 2). The patient
characteristics include: age, gender, site of cancer, stage
of cancer, comorbidity and prior function. Patient
characteristics are important as predictors of physical
function. All participants in the study are older than 65
and the prior functional limitations based on the aging
process alone may influence physical function prior to
death. Both males and females are included in the study and
the differences in physical function experienced between the
groups will be explored. The site of cancer may influence
the physical function specifically related to the cancer or
the treatment modality chosen. Comorbid conditions place
patients at higher risk for decreased physical function and
may be an essential predictor of physical function in the
terminal phase of the cancer patient. Levels of physical
function at the time of diagnosis are significant when
discussing levels of physical function prior to death.
Those individuals dependent at diagnosis, with established
means to deal with the dependencies, may experience
dependencies prior to death in a different manner than those

who had previously been independent. Inclusion of the prior

19
level of function within a risk factor profile will help to
determine the impact of prior levels of function on an
individual during the terminal phase of cancer.

Physical function outcomes include patient statements
in three categories: 1) performance in SF-36 Physical
Function, specifically limitations in moderate activities,
vigorous activities, lifting groceries, climbing stairs,
bending, kneeling, or stooping, and walking distances; 2)
dependence or independence in Instrumental Activities of
Daily Living (IADL) including transportation, laundry,
shopping, housework, and, cooking and preparing meals; and
3) dependence or independence in the Activities of Daily
Living (ADL) of dressing, eating, bathing, walking inside
the house, toileting, and transferring in and out of bed,

Using the SF-36, IADLs, and ADLs, four patient outcome
categories will be developed to be used as predictors of
physical function including: 1) Independent, 2) Dependent in
high level of physical function -the SF-36 physical function
subscale- only, 3) Dependent in high level physical function
and IADLs, and 4) Dependent in high level function, IADLs,
and ADLs. Within the proposed Predictor of Physical
Function model (See Figure 2), physical function is
represented on a trajectory from independence to dependence.
Boxes representing the three measurements scales used are
placed between the independent and dependent boxes, arranged
in such a way as to illustrate higher levels of function to

basic function. Arrows are placed to depict the flow from

20
independence to dependence between the three measures and
within the individual measures themselves. It is proposed
that as SF-36 scores decrease, patients will begin to report
limitations in IADLs first, and will report limitations in
ADLs last until the reported limitations lead to disability
and dependence. The Predictor of Physical Function Model,
can then be used to predict the level of function in other
terminally ill elderly cancer patients with the intent to
then develop appropriate care interventions (See Figure 2).
Review of the Literature
While it is expected that physical function will
decrease with impending death, the identification of patient
characteristics in the terminal course of the disease
specifically related to physical function will assist the
health care provider to determine appropriate interventions
aimed at improving the quality of life for the patient.
Researchers frequently use ADLs and IADLs as criteria to
determine a patients ability to function in activities of
daily living and instrumental activities of daily living
(Lynn, Teno, Phillips, Wu, Desbiens, Harrold, Claessens,
Wenger, Kreling, 8 Connors, 1997; Given et al., 1994; Bouts
et al., 1988; Kurtz et al., 1994; Berkman, Shearer, Simmons,
White, Robinson, Sampson, Holmes, Allison, 8 Thomson, 1996;
Mickus, Stommel, 8 Given, 1997; Mann, Ottenbacher, Hurren, 8
Tomita, 1995; Lindsey, Larson, Dodd, Brecht, 8 Packer, 1994;
Atwood, Holm, 8 James, 1994; Gompertz, Pound, 8 Ebrahim,

1994; Mui 8 Burnette, 1994) and have been referred to in the

21
hospice literatures as indicators of quality of life
(Hirsch, 1995; Mar 8 Masterson-Allen, 1987).

A review of the literature regarding care of the
terminally ill cancer patient, comorbidity, and physical
function in a variety of combinations is extensive. Even
though the loss of physical function has been identified as
a key element related to quality of life, there exists a gap
in the literature as to what factors predict physical
function in the elderly terminally ill cancer patient. The
importance of knowing predictors of physical function in
this population and the relationship of physical function to
quality of life and costs to systems of care must be
examined.

Wins

The characteristics of age, gender, site, stage,
comorbidity and prior levels of function are immutable.
Placed within a risk profile these characteristics may help
to predict levels of physical function prior to death.
Patient characteristics are described within the
demographics of most studies and have been linked to general
unmet needs, frequently including ADLs.
W

The relationship of age, gender, site of cancer and
stage of cancer to physical function particularly in the
elderly has received mixed attention. Many authors have
addressed the relationship of symptom management

(particularly, pain) to quality of life issues in patients

22

receiving hospice (McMillan, 1996; Mar 8 Masterson-Allen,_
1990; Mar 8 Masterson-Allen, 1987; Schonwetter, 1996)
without attention to physical function, while others have
highlighted the importance of maintaining physical function
(Houts, Yasko, Harvey, Kahn, Hartz, Hermann, Schelzel, 8
Bartholomew, 1988; Dudgeon, Raubertas, Doerner, O'Connor,
Tobin, 8 Rosenthal, 1995; Given_et al., 1994; Kurtz et al.,
1994). To address the needs of patients with advanced
cancer, Abraham, Callahan, Rossetti, 8 Pierre (1996), guided
the development of teams of clinicians in Veterans' Affairs
hospitals whose focus was to deliver expert palliative care.
Some of the patient characteristics included in this study
were age, gender, race and diagnosis. In this prospective
study conducted in Philadelphia between 1993 and 1994 the
team received 80 consultations, with complete data aVailable
on 75 patients. The heterogenous group consisted of
African-Americans (60%), non-Hispanic white (37%), and
Hispanic (3%), with 98% of the participants male. The
primary diagnosis for 40% of the patients was lung cancer,
followed by prostate cancer (22%), and gastrointestinal
cancer (21%). Although age was listed as demographic
information included in this study details were not reported
specific to the patient population (Abraham et al., 1996).

The patient characteristics and unmet needs of the
terminally ill cancer patient in the last month of life were
addressed in a study by Houts, Yasko, Harvey, Kahn, Hartz,

Hermann, Schelzel, and Bartholomew (1988). A stratified

23
random sampling of patients with a cancer diagnosis
registered as dead in the state of Pennsylvania was
conducted in a six month period of time in 1985.
Stratification by age with groups from 20-39, 40-64, and >64
occurred to insure inclusion of the needs of young people.
Of the 433 participants, 33% were over the age of 64, with
no further information available about the demographic
breakdown of this age group. Focus groups were conducted
separately with the surviving family members to attempt to
determine the unmet needs immediately after diagnbsis and
with perSOns terminally ill with cancer to identify unmet
needs in the last month of life. Findings were similar
between the groups. Within the group of persons with a
cancer diagnosis, weighting of the sample results was done
to match age, sex, and diagnostic characteristics. The most
frequently reported unmet needs were ADLs (42%). Using
logistic analysis to determine what patient characteristics
were associated with unmet needs, independent variables
included the deceased's age, sex, income before diagnosis,
education, race, marital status, the geographic location of
the death, number of days home in the last month, rural or
urban home, and the site of the primary tumor (breast, lung,
and colon). Physical unmet needs, described after
weighting, were most frequently reported if the cancer
patient was nonwhite, younger, had been diagnosed with
breast cancer, and had spent more days at home in the last

month of life (Houts et al., 1988).

24

The relationship between the patient characteristics
of age, symptoms and survival status on the physical health
of patients with cancer was examined by Kurtz, Given, Kurtz,
and Given (1994) in a sample of 208 patient-caregiver dyads
recruited in six community-based cancer treatment centers in
Michigan. Adult patients included in the study were older
than 20 years of age, newly diagnosed with a solid tumor or
lymphoma or a recurrence of a previous diagnosis, and
receiving treatment. The patients were divided into
survivor groups and age groups to facilitate comparison of
experiences at different stages of illness and age.
Analysis of variance techniques were used to test for
differences in means according to patient age and survivor
groups. Results of the study included that higher-order
function (immobility) is affected by both the nearness to
death and the patients symptom experience but that
limitations in ADLs (basic function) were affected sclely by
symptoms and not nearness to death (Kurtz et al., 1994).

The manner in which age, treatment, site of cancer and
symptom experience affect physical function and mental
health were examined by Given, Given, and Stommel (1994) in
a longitudinal study of cancer patients aged 50 years and
older (average age 63 plus or minus 7.3 years) over a 6
month period of time. The participants completed an intake
survey and'another questionnaire at 6 months to determine
physical health using ADL measures as well as measures of

symptoms and mental health. A terminal diagnosis was not a

25
variable studied in this research, and, for this group, age,
gender and treatment protocols did not impact physical
function. Instead, the symptom experience and changes in
symptoms appeared to impact physical function over time.
Stage of disease was not discussed in this study, but
primary site of cancer did not impact physical function.
However, the authors stress that if more lung patients had
survived to 6 months other conclusions about physical
function may have been drawn (Given et al., 1994).

Dudgeon, Raubertas, Doerner, O'Connor, Tobin, and
Rosenthal (1995) looked at the needs of cancer patients with
recurrence, identifying their physical needs in palliative
rather curative terms. The median age of the group was 63
years (range 23-85) with 69-71% of the participants female.
Seventy-five patients were recruited and placed in two
groups: those with recurrent disease following curative
surgery or radiation with or without adjuvant treatment; and
a progressive group with disease progression following
noncurative treatment. The responses to questions regarding
severity of physical symptoms, emotional, psychological,
social problems, and difficulties were evaluated. Greater
physical needs and more severe symptoms were associated with
more advanced disease and in terms of physical function the
groups expressed difficulty with housework, leisure
activities, and ambulation (Dudgeon et al., 1995). 'Specific
links between physical function and symptom experience were

not addressed. However, the authors suggest that patients

26
with advancing cancer require a continuum of care to meet
changing needs throughout the disease trajectory as opposed
to addressing physical, psychological, functional, and
spiritual needs only at diagnosis or prior to death.

In summary, while age, gender, site and stage are
mentioned as demographic factors related to physical
function, specific details for each are under-reported
(Greisinger et al., 1997; Abraham et al., 1996) making it
difficult to draw comparative conclusions.i Although some
studies (Given et al., 1994; Dudgeon et al., 1995; Kurtz et
al., 1994) have focused specifically the needs of elderly
cancer patients, none have addressed age, gender, site and
stage as risk factors related to physical function in the
elderly terminally ill cancer patient. While most studies
have used the cancer diagnoses of breast, colon, lung and
prostate cancer, no studies looked at the differences in
physical function experienced by elderly males compared to
elderly females with the same diagnoses (lung or colon
cancer). Determining the relationship of age, gender, site
and stage of cancer to.physical function as potential risk
factors is essential.
morbidity

The relationship of comorbidity and physical function
is of primary concern especially if the comorbid condition
already impacts the physical function of an individual. 'The

impact of cancer in the terminal phase of the disease and

27
the physical function of an individual can have profound
effects and be greatly impacted by comorbid conditions.

Blaum, Liang, and Liu (1994), reported the relationship
of comorbid conditions to service utilization in a study of
11,497 people aged 65 and over. Predictor variables
included the chronic diseases of hypertension, arthritis,
diabetes, cancer and atherosclerotic heart disease; self--
rated health status; and disabilities. Control variables
included gender, race, education, and social integration,
with physician visits and hospital stays measuring outcome
variables. Results of the study indicate that diseases may
impact physical health status and the utilization of
services differently. The authors identified problems
associated with measuring and conceptualizing disabilities
in physical function (IADLs) related to the lack of models
measuring disability in all settings. Measurement issues
arising from the use of self-reported chronic diseases
related to the variables of interest was also identified as
a limitation of the study (Blaum et al., 1994).

Other authors have attempted to describe the
relationship of cancer and comorbidity in older patients in
greater detail. Patients aged 65 and older experience age-
related comorbid conditions that once acquired, generally
remain and are in themselves, disabling. Conditions such as
arthritis, heart disease, diabetes, hypertension and COPD
effect the complexity of treatment of cancer patients

placing them at higher risk for adverse effects (Yancik,

28
Havlik, Wesley, Ries, Long, Rossi, 8 Edwards, 1996).
Beginning in 1992, the National Institute of Aging (NIA),
and the National Cancer Institute (NCI), began a study to
determine what the nature of the comorbidity burden at the
diagnosis of a malignancy is; and how do the concomitant
conditions affect the diagnosis, treatment, and survival of
cancer patients aged 65 and older. Populations of cancer
patients were taken from those participating in the NCI
Surveillance, Epidemiology, and End Results (SEER) Program
who were diagnosed in 1992 with equal numbers of patients
selected within the age groups of 55-64, 65-74 and z 75.
Tumor site selection was based on three criteria: the
predominant malignancies found in older patients (colon,
breast, and prostate cancer); the prominence of the cancer
with substantial incident differences related to gender
(stomach, and urinary bladder cancer); and finally,
age/stage differences at the initial diagnosis between the
younger and older age groups and treatment variations
related to age (ovarian and cervical cancer). Demographic
information collected from medical records included age,
gender, extent of disease, tumor history, first treatment
course, and survival outcome. Comorbidity information was
gleaned from physician notes, anesthesia notes, nursing
records, discharge summaries, and a variety of laboratory
reports. Preliminary results suggest that for most tumor
sites, the proportions of comorbidities increase with

advancing age.

29

Comorbidity and breast cancer issues have been
addressed in a number of studies and a variety of
perspectives including costs of care (Taplin, Barlow, Urban,
Mandelson, Timlim, Ichikawa, 8 Nefcy, 1995) treatment
(Newschaffer, Penberthy, Desch, Retchin, 8 Whittemore,
1996), survival (Satariano, 1993; Satariano 8 Ragland,
1994), and risk (Graves 8 Bland, 1995). None of the studies
addressed the relationship between comorbidities and
physical function in the breast cancer patient. A basic
understanding of the relationship of these factors for women
is essential because breast cancer is the leading form of
cancer for women (Satariano, 1993).

Epidemiologic studies suggest the age adjusted
incidence of breast cancer for women in the United States
between 1986 and 1987 was 108.9 per 100,000 with the
incidence increasing with age from 34.4 (<50 years of age)
to 351.1 (> 50 years of age) per 100,000 (Satariano, 1993).
After reviewing 463 breast cancer cases identified through
the Metropolitan Detroit Cancer Surveillance System,
Satariano (1993) concluded that women with two or more
concurrent health conditions were 2.2 times more likely than
those without comorbidity to die from their breast cancer,
with heart disease being most problematic. The possibility
exists that comorbid conditions have little effect on the
course of the breast cancer, but that the breast cancer or

treatment modalities may accelerate the course of the other

30
conditions thus increasing the risk of death from those
diseases (Satariano 8 Ragland, 1994).

The impact of comorbidity on the life expectancy for
men with localized cancer was addressed by Albertsen,
Fryback, Storer, Kolon, and Fine (1996). Through.the use of
three previously validated systems (comorbidity indexes
developed by Greenfield et al., Charlson et al., Kaplan 8
Feinstein), comorbidities were assessed to determine the
predictability of mortality among men with clinically
localized prostate cancer. A retrospective cohort of men
aged 65 to 75 years who were identified by the Connecticut
Tumor Registry and who were diagnosed with prostate cancer
between 1971 and 1976 were studied. Using identifying
information, the hospital of diagnosis, and treatment and
the case disposition, as well as patient records chronicling
comorbidities, the indexes were tested. A variety of
analysis techniques were used to determine that Gleason
scores and comorbidity indexes were highly significant
predictors of mortality (p<0.0001) (Albertsen et al., 1996).

In summary, the impact of comorbidity on physical
function in the terminally ill cancer patient should not be
ignored. However, no studies addressed the relationship
between comorbid conditions and the physical function of a
terminally ill cancer patient. The impact on mortality must
be considered whether the comorbid condition affects the
type or tolerance of a treatment modality or whether the

cancer and treatment impacts the course of the chronic

31

illness, or remains unaffected by the treatment. Either the
cancer or the comorbid.condition can lead to increased
mortality and should be considered when determining
appropriate interventions for the terminally ill elderly
cancer patient.
W
. No studies reviewed addressed the level of physical
function in the cancer patient at the time of diagnosis.
One study discussed function serving as the basis to
determine dependency and the need for long-term care
services (Finch, Kane, 8 Philip, 1995) including measures of
ADLs and IADLs. 'In this study, measures of function using
the Katz ADL scale (alpha coefficient 0.85) assume equal
weighting among six items: dressing, eating, bathing,
walking inside the house, toileting, and transferring in and
out of bed. Responses determine the level of independence
and include: independent (doesn't require the help of
another to complete the task), need supervision only
(requires the assist of another occasionally in case of
problems), need some physical help (requires physical help
during all or part of the activity), or needs total physical
help (need another person to carry out the activity) (Finch
et al., 1995).

IADLs include: transportation, laundry, shopping,
housework, and cooking and preparing meals. Levels of
responses to determine dependency are the same as used in

the ADL scale. In a descriptive correlational study by

32
Whittle and Goldenberg (1996) conducted to determine the
relationship between functional health status and IADLs in a
group elderly people, a convenience sample of 47 subjects
(>70 years of age) completed three questionnaires including
the Multidimensional Functional Assessment IADL subscale.
Results suggest that declines in social function, health
perception and physical function are important indicators of
overall health status, and that each could contribute to
increased IADL dependency. The small sample size is
recognized as a limitation by the authors with the
suggestion that further studies be done to replicate the
results (Whittle 8 Goldenberg, 1996).

ADL measurement as an indicator of the use of assistive
devices by the elderly living in community settings was
studied by Mann, Ottenbacher, Hurren, and Tomita, (1995).
The purpose of the study was to determine the relationship
of the use of assistive devices, pain, and functional status
to the severity of physical illness the elderly disabled
reported. One hundred and ninety-four elderly (mean age of
75.4) disabled persons (67.5% female; 89.7% white; 54.6%
widowed; 75.3% had children; and 47.9% lived alone)
recruited in the western New York region, were placed into
one of seven groupings based on level of disability.
Interviews conducted in the subjects home determined levels
of function using a battery of assessment tools, one being
the Functional Independence Measure (FIM) of ADLs. Results

of the functional independence score indicate that as ADLs

33

decline physical disability increases. The authors note a
limitation of the study because of the comparison of groups
based on their physical disability rather than following the
individuals over a period of time (Mann et al., 1995).

Elderly cancer patients experience varied levels of
dependence during the disease and treatment course.
Lindsey, Larson, Dodd, Brecht, and Parker (1994) conducted a
longitudinal prospective study of 45 elderly (mean age 69.8
years) patients receiving radiation for either breast (42%)
or lung (58%) to determine outcomes in a variety of
variables including multidimensional functional status.
Data collection points included the beginning, middle, and
conclusion of therapy as well as three months post radiation
with the goal of determining if there existed a significant
difference between the subjects with comorbidity and those
without for moderator (gender, caloric intake, adequacy of
caloric intake, radiation dose, side effects, and social
support) or outcome variables (weight, BMI, and functional
status) during and after radiotherapy. Also, the authors
were interested if there was a significant change in any of
the outcome variables (weight and functional status)
throughout the course of radiotherapy (Lindsey et al.,
1994). Results of this study indicate that for patients
receiving radiation consuming less than adequate nutritional
intake, functional status was not disrupted.

The interaction effect of age, symptoms and survival

status on the physical health of patients with cancer was

34
examined by Kurtz et al. (1994). One focus of the study was
to determine how age and survival status influenced
dependencies in physical function (as measured by the SF--
36). Cancer patients (n-208) involved in treatment were
interviewed over the course of one year with measures of
their physical function recorded. After applying analysis
of variance techniques it was determined that survival
status had a direct effect on immobility. Recommendations
were made to encourage the development of strategies
directed at assisting patients deal with immobility issues
(Kurtz et al., 1994). In a longitudinal study of 111
elderly cancer patients involved in treatment it was
determined that primary site may impact limitations in.
function, that age and gender had no impact on function, but
that symptoms experienced at intake and changes in those
symptoms over time predicted physical function. No gender
differences in physical function were found in this study
(Given et al., 1994).

The SF-36 measure used in both of these studies was
designed to determine how patients view physical function
and its effect on their quality of life (VanHook, Berkman, 8
Dunkle, 1996). The studies by Kurtz et al. (1994) and Given
et al. (1994) demonstrate that a variety of patient
characteristics impact physical function as measured by the
SF-36. Because the SF-36 measure addresses dimensions of
quality of life related to physical function it is important

to include the SF-36 when assessing patient needs.

35

In summary, the need to measure physical function using
the SF-36, IADLs and ADLs and develop appropriate
interventions to meet the identified needs has received
attention from a variety of researchers (Finch et al., 1995;
Whittle 8 Goldenberg, 1996; Mann et al., 1995; Mickus et
al., 1997; Lindsey et al., 1994) for a variety of reasons.
Berkman et al. (1996) have suggested that with the
increasing numbers of elderly people and escalating health
care costs, screening of the specific needs of individuals
is essential and the use of IADL and ADL measurements are
more likely to be predictive of interventions than other
factors. Therefore, the need to measure physical function
at the time of diagnosis and throughout the cancer care
trajectory is essential. Using the SF-36, IADL and ADL
measurements as predictors of physical function in the
elderly cancer patient is one method of developing
appropriate strategies to meet the needs of this patient
group. '

This study will identify the patient characteristics of
terminally ill elderly cancer patients, and outcomes in
physical function that could be used in the future to
develop a risk profile to provide more information about the
care requirements of the terminally ill cancer patient. By
focusing on male and female patients with breast, lung,
colon, and prostate cancer, differences can be identified

which relate to their specific disease.

36
Methods

W

The original study was a cohort of cancer patients and
their caregivers recruited from a variety of sites through
Michigan and Indiana. The Family Home Care for Cancer--A
Community Based Model, Grant # R01 NR01915, is funded by the
National Center of Nursing Research and the National Cancer
Institute (NCI), Barbara A. Given, PhD, RN, FAAN, and
Charles W. Given, PhD are the Principal Investigators.
Collaboration between Michigan State University (MSU)
College of Nursing,_College of Human Medicine, Departments
of Family Practice, Medicine and Surgery, the Cancer Center
at MSU, and the MSU Cancer Treatment Consortium provided
support. Data collected from structured telephone
interviews and self-administered booklets with patients
across a variety of waves will be secondarily analyzed to
answer the research questions.
StndY_Samnle

Participants in the original study were recruited from
a variety of community cancer treatment sites in Michigan
and Indiana. Criteria for inclusion were: elderly patients
(> 65 years); newly diagnosed with solid tumor cancer either
breast, lung, colon, or prostate; and currently receiving
treatment (surgery, Chemotherapy, or radiation therapy).
Patients were asked to identify caregivers, but that will

not be analyzed for this part of the study.

37

Those patients who died after completing Wave I and/or
Wave II interviews and who died before completing a Wave III
interview were included in the analysis. The interval of
time to death wascounted in number of days, determined by
subtracting the date of death from the date of the last
interview completed prior to death.

Staging data determined during audits of the patients
records were used as a variable in this study, but was not
used as a criteria of eligibility. While it is expected
that all participants were late stage prior to their deaths,
it cannot be assumed. Therefore, available staging
information on the participants may range from early to late
stage. Breast cancer is staged using the TNM staging system
including tumor classification of Tis through T4, node
classification N0, through N3 and the presence or absence of
metastasis, M0 and M1, with the stage grouped then as Stage
0 through stage IV (Groenwald, Frogge, Goodman, 8 Yarbro,
1997). A

Lung cancer is staged using the Veterans Administration
classification of Limited or Extensive (small cell
carcinoma) as well as TNM staging for non-small cell
carcinomas including tumor classification of TX through T4,
node classification of N0 through N3 and the presence or
absence or metastasis, M0 through M1. Stage grouping '
includes Stage 0 through Stage IV (Groenwald et al., 1997).

Colon cancer is staged using the TNM staging including

tumor classification of Tis through T4, node classification

38
of N0 through N3, and the presence or absence of metastasis
M0 M1. Stage grouping includes Stage 0 through Stage IV
(Groenwald et al., 1997).

Prostate cancer is staged using the TNM staging
including tumor classification of TX through T4b, node
classification of N0 through N3, the presence or absence of
metastasis as M0 or M1, stage grouping including Stage 0 '
through Stage IV, and the Jewett staging system of Stage A
through Stage D (Groenwald et al., 1997). 1
W

-In the original study, patients aged 65 and older were
systematically identified by personnel of acute care
agencies or oncology centers and practices, who had been
hired by the grant to identify patients who fit the study
criteria. Nurses recruited those patients who met the
criteria, explained the nature of the study to the patients
and obtained signed consent. This consent provided
authorization to review medical records, obtain address and
telephone numbers as well as other clinical information
needed for the purposes of the study. Those individuals
giving written consent were observed for a one year period
of time at specific intervals. During this time frame
patients were contacted within six weeks of their original
diagnosis and again at 12, 24, and 52 weeks. Telephone
interviews were conducted using structured, closed ended
questions. After completion of interviews patients

completed mailed self-administered interviews.

39

Interviewers included graduate students who were nurses
or medical students who received specific training to insure
consistency of techniques and adherence to the protocol.
Training for interviewers included: manuals which contained
the study protocols, the CI3 computer program to facilitate
following the protocols, mock interviews and taped mock
interviews; taped actual interviews and; quality assurance
review of 10% of the patient records for each interviewer
monthly, with feedback provided by the P13.

For this study, only the patient interviews served as a
data source using information collected at the wave prior to
death and at entry into the study. The questions used will
focus on the patients perception of physical function within
the categories described. Sociodemographic used included
that collected at study entry.

W

All methods used in this research have been previously
tested by Given and Given in their work with elderly cancer
patients. SF-36 (physical functioning subscale) has a
reported alpha coefficient of .92, IADL of .91, and ADL of
.85. SF-36 validity scores for individuals with chronic
conditions have been reported at .87 (Ware, Kosinski, 8
Keller, 1994). ADL validity scores reported for elderly
populations are .83 (Van Hook et al., 1996).

: Ii J E El 'l'
The independent variables for this study include: 1)

the interval of time (between the date of the last interview

40 a
prior to death and the date of death); 2) age; 3) gender; 4)
site of cancer; 5) stage of cancer; 6) comorbidities; and 7)
prior level of function. Males and females are reported
separately if the diagnosis is lung or colon cancer.

Intszgsi_c£_tins is reported in number of days as
calculated by subtracting the date of death from the date of
the last interview completed prior to death.

accicdsncg:snhic_infcrnsticn for this study includes
age and gender. Age is reported in intervals of 5 year
spans of time and include: 65-69 years; 70-74 years; 75-79
years; 2 80 years. Gender is reported as males and females.

sits_cf_csncsr is reported as breast, lung, colon, or
prostate. I

Stscs_cf_csncsr is reported as Early (Stage I and II)
or Late (Stage III and IV).

Ccnczbid_9cnditicns are reported by patients based on a
set of responses to a specific list of medical conditions.
The question asked if the patient had ever been told by a
health care professional that they had any of the following
problems including, but not limited to, stroke,
hypertension, diabetes, etc. Comorbidities were then
counted within ranges including: 0 (no reported comorbid"
conditions); 1-2 (reported comorbid conditions); 3 or more
(reported comorbid conditions) after counts of “yes” and "no"
are obtained.

The dependent variable for this study is physical

function. Physical function is defined as the ability to

parti
daily
physi<
in hit
tunct
funct
IADL:
not :
be c

anal

limi
Md:
car]
Clll
sto-

IBOI‘

tra

and

ins
bed

in .

con

in l

41
participate in SF-36 activities, instrumental activities of
daily living, and activities of daily living. Categories of
physical function will include: 1) Independent; 2) Dependent
in high level of physical function- the SF-36 physical
function subscale-only; 3) Dependent in high level physical
function and IADLs; and 4) Dependent in high level function,
IADLs and ADLs. These categories of physical function are
not found in the interview. Instead, final categories will
be constructed based on distributions determined after
analysis.

The 5£;1§ category addresses the perception of
limitations in physical function in 10 categories including:
moderate activities; vigorous activities; lifting or
carrying groceries; climbing several flights of stairs;
climbing one flight of stairs; bending, kneeling or
stooping; walking one block; walking several blocks; walking
more than a mile and; bathing or dressing of self.

The IADL category includes the tasks of:
transportation, laundry, shopping, housework, and cooking
and preparing meals.

The ADL category includes the tasks of: eating, walking
inside the house, toileting, and transferring in and out of
bed. The activities of bathing and dressing will be covered
in the SF-36 measurement.

Msssnrsnsnt_snc_5ccring. Measurement tools used to

collect the data from patients measuring physical function

in the original W

42
Bassd_§tndy included the SF-36, IADLs and ADLs (See Appendix
A).

SF-36 measured perceived limitations in: 1) moderate
activities; 2) vigorous activities; 3) lifting or carrying
groceries; 4) climbing several flights of stairs; 5)‘
climbing one flight of stairs; 6) bending, kneeling, or
stooping; 7) walking one block; 8) walking several blocks;
9) walking more than a mile; and 10) bathing and dressing
oneself. The SF-36 items and scales are scored in such a
manner that a higher score indicates better health (Ware,
1993). To obtain the scaled score three steps are followed
after data entry. First, items are recoded or the process
of deriving the item values used to calculate the scale
scores. The process of recoding changes any out of range
values to missing; recodes values for the 10 items; and
substitutes for missing items. Second, the scale scores are
computed by summing across items in the same scale to obtain
raw scale scores. After items are recoded and missing data
is handled the raw score is computed for the scale by
summing the responses for all items in that scale. For
example the lowest and highest possible raw scores for.
physical function are 10 and 30. This range is determined
by the responses given to the questions with a score of: '1"
if the respondent selected “No, not limited at'all”; ‘2" for
“Yes, limited a little”; and “3" for “ Yes, limited a lot”.
According to Ware (1993) this simple scoring method is

possible because items within the same scale have

43
relationships equivalent to the underlying health concept
being measured. Last, the raw score is then transformed
into a scale score of 0-100 by using the following formula:
Actual raw score minus the lowest possible raw score,
dividing this by the possible raw score range (20) and
multiplying the product by 100. This transformation
converts the lowest and highest possible scores to zero and
100 representing the percentage of the total possible score.
Ware (1993) provides specific directions to complete the
scoring process. The SF-36 scaled score of 0 to 100, with
100 being high level of physical functioning, will be used
to compare IADLs and ADLs. One disadvantage of using the
SF-36 is the potential of under reporting of disability in
telephone or personal interviews (McHorney, 1996). For this
reason and others it is important to use more than one
measure of physical function.

IADLs were measured by having the patient respond to
levels of independence in 5 categories including: 1)
Independent; 2) Needs supervision only; 3) Needs some
physical help; 4) Needs total physical help; 5) Never
dressed or Not applicable; and 6) Refused. For each choice
of physical functioning the responses were coded as: “1" for
independent; '2" for needs supervision only; ‘3” for needs
some physical help; *4" for needs total physical help; '5”
for never dressed or not applicable; and “9" for refused.
Summated scores for items 1-4 ranged from 5 to 20.

Responses to items 5 and 6 were reported separately to avoid

44
skewing the data. As supported by a review of the
literature, the use of IADLs and ADLs subscales in
combination are good indicators of dependency levels, and
for this reason will be used within the context of this
study as a predictor of physical function in the terminally
ill elderly cancer patient.

ADLs were measured by having the patient respond to
questions of independence in physical function, with 6
categories available including: 1) Independent; 2) Needs
supervision only; 3) Needs some physical help; 4) Needs
total physical help; 5) Never dressed or Not applicable; and
6) Refused. For each choice of physical function the
responses were coded as: '1" for independent; ‘2" for needs
supervision only; “3" for needs some physical help; ‘4" for
needs total physical help;“5” for never dressed or not
applicable; and ‘9" for refused. Summated scores for items
1-4 ranged from 6 to 24. Responses to items 5 and 6 were
reported separately to avoid skewing the data.

Demographics include age and gender. Males were scored
as “1" and females were scored as “2". Age was reported in
5 year spans of time with each age range reported as a
percentage of the total. The mean age of the study
participants and standard deviation were also reported.

Comorbidities were reported as: “0" no comorbidities;
'1-2" comorbid conditions and.“ 23" comorbid conditions.
Each category was scored as: '1" for no comorbid conditions;

'2" for ‘1-2' comorbid conditions or; “3" for _;z3" comorbid

45
conditions. Scores for comorbid conditions ranged from 1 to
3.

Each patient diagnosis was categorized by cancer type
and stage. Each cancer type was reported as a percentage of
the total population. Lung and colon cancer types were
further broken down into percentages of females or males to
determine if there are any gender biases related to physical
function.

Categories of stage included “Early” or “Late” stage.
“Early” included those patients with a I or II staging and
“Late” included those patients with a III or IV staging.

All “1's” and “11's” received a score of “1" and all “III's”
and 'IV's" received a score of “2". Stages were reported as
percentages.

In order to classify patients according to their levels
of physical function and to develop categories of data
analysis sensitive to variations in physical function prior
to death the following approaches were taken using the SF-36
physical function scale a sensitivity analysis was conducted
to determine the point at which patients scores on physical
function have 1-5 IADL dependencies and any ADL
dependencies. The result will be the development of a
classification system with no reported dependencies;
dependency scores on SF-36 physical function alone; SF-36
physical function plus IADL; and the dependencies in SF-36,

IADLs, and ADLs.

46
Data_Analeia

The dependent variable for this study is physical
function. The independent variables include cancer site,
stage of cancer diagnosis, patient age, gender, number of
comorbid conditions, and interval of death.

For research question 1, to determine what factors
might predict variations in levels of physical function
prior to death a multinomial logistic model was used to
predict the four levels of physical function described. An
ANOVA was applied to determine the differences in means of
the groups. Cross tabulations were applied to determine if
there is; cancer site effect on physical function; and
effect of early or late stage on physical function. Mean
scores and standard deviations for gender, age, site, stage,
numbers of comorbid conditions, and interval of death, were
compared to demonstrate changes in levels of SF-36 physical
function three months prior to diagnosis and in the defined
interval before death. Observed frequencies and percentages
of the total sample will be presented to show the
distribution of participants age, gender, site of cancer,
stage of cancer and numbers of comorbid conditions.

For research question 2, cross tabulations were run on
the independent variables to determine if there is a
systematic gender effect on physical function.

E l l' E H S l' l
Participants in the Family Home Care for Cancer--A

Community-Based Study were contacted initially during

47
hospitalization by recruiters who were part of the study
staff. Information about the study was presented to them
and they were asked if they were willing to participate.
The participants physicians (including oncologists) were
informed about the study. Signed consent forms were
obtained (see Appendix B). Participants were allowed to
refuse to answer any part of the study questions that they
were uncomfortable with and were allowed to withdraw from
the study at any time. .

The original study was approved by the University
Committee on Research Involving Human Subjects at Michigan
State University with yearly review and approval conducted.
Anonymity of each participant was assured by identifying
each person with a number assigned at the time of study
entrance. Only identifying codes are available on all
questionnaires and records. The consent forms and
identifying data are not available to the principal
investigators.

Approval for secondary analysis was obtained from the
Michigan State University Committee on Research Involving
Human Subjects prior to data analysis (see Appendix C). A
Subsample of the original sample was used with no further
contact of the patient or caregiver made. Consent forms
from the original study are on file and available to the
Principal Investigators only. Data utilized included all
information available prior to the patient death. Coded

identifiers were only available, not subject identifiers.

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48
Any published information available will not report
information about individuals.
ResearcLLimitaticns

Research limitations include the small sampling of
minority groups within the original study, leading to an
even smaller representation in this subsample of terminally
ill patients. Also, the study is from a self-select group
of community-based residents and does not represent issues
pertinent to those living in rural settings. The original
study does not represent those who sought no treatment for
their cancer.

A limitation of this secondary analysis includes the
choice to not include treatment modalities as covariates and
thus determine the relationship of treatment to the physical
function of the terminally ill elderly cancer patient. This
analysis also does not represent the specific needs of
persons with early stage cancer, but those who died during
the course of the study. 1

Another limitation involves the small sample size
available of those patients who died within time frame set
forth for this study making it difficult to generalize the
information obtained to other populations.

Results
Descrintion_of_the_samnle

The sample consisted of 57 patients, with more than

half (ns34, 59.6%) male and more than half the total sample

(ns37, 64.9%) were between the ages of 65-74. Most of the

49
patients were diagnosed with lung cancer (ns46, 80.7%) and
with late stage cancer (ns41, 73.2%). More than half (nF29,
51.8%) of the patients reported 3 or more comorbid
conditions (see Table 1).
W
1) What factors (interval of time between the date of the
interview prior to death and the date of death; age;
gender; prior level of function; site of cancer; stage
of cancer; and comorbidities) predict variations in the
levels of physical function among cancer patients in
the interval of time prior to their death?

Using an ANOVA model, a one-way analysis of variance
for interval levels of the dependent variable physical
function scores from the SF-36 by each of the specified
single factor (independent) variables was produced to
determine trends across categories and specific contrasts.
Due to missing values, only 48 observations were used for
this analysis.

The ANOVA model was chosen to test the significance of
differences between means (Polit 8 Hungler, 1995; Moore 8
McCabe, 1993), that is, to assess whether the observed
differences among the sample means are statistically
significant where Pg 0.05. The ANOVA decomposes total
variability of a set of data into two components: the
variability resulting from the independent variable and
other variability (individual differences or measurement

unreliability for example). The null hypothesis tested

50

 

 

Table 1.

”0“. -: -go " ’0 0 .ii. ‘ o .‘O’IIOO go. . .o ‘:
Demographic Variable n 1
Gender

Female 23 40.4

Male 34 59.6
Patient Age '

65-74 ‘ 37 64.9

75 and above 20 35.1
Cancer Site

Br/Co/Pr* 11 19.3

Lung 46 . 80.?
Diagnostic Stage

Early** 15 26.8

Late*** 41 73.2

Frequency Missing = 1

Reported Comorbid Conditions ‘

0-1 17 30.4
2 ' 10 17.9
3+ 29 51.8

Frequency Missing = 1

 

*Breast/Colon/Prostate
**Stage 0, I, or II
***Stage III or IV

within this model is that the SF-36 mean scores for each of
the independent variables will be equal.

The statistic calculated in an ANOVA model is the F
statistic that compares the variation among groups with the
variation within groups (Polit 8 Hungler, 1995). The
calculated value of the F statistic appears under the column
labeled F-value (see Table 2) and its P value is under the

heading P>F. For example, the value of F for gender is 5.85

51

Table 2.

WW
El'lEllIIliE'ltll

 

 

Independent 0! SS Mean Square F-value P>F
Variables

Gender 1 2764 2764 5.85 0.02
Age 75 l 555 555 1.17 0.28
Site 1 4155 4155 8.79 0.00
Stage 1 1194 1194 2.53 0.12
Comorbidity 2 438 219 0 . 46 0 . 63
Interval 2 2819 1409 2.98 0.06
P! 3M* 1 8518 8518 18.02 0.00
R-Squars 0.51 SF-36 Mean 52.68

 

* Physical Function 3 months before diagnosis

with a P value of 0.02 meaning that an F of 5.85 or larger
would occur only 2% of the time by chance. Because the P
value is small, the observed variation in the sample means
cannot be attributed to chance. Therefore, it is possible
to reject the null hypothesis for gender. Other variables
in which the F value is significant are site of cancer
(P-0.00) and physical function scores 3 months before
diagnosis (P=0.00) (see Table 2). The R-square of .51 tells
us that 51% of the variance in the dependent variable
(physical function) can be explained by the independent
variables.

Frequencies, means, and standard deviations are
reported within each group for each independent variable
(see Table 3). It was possible to determine the specific

differences in physical function (SF-36) for those

52

Table 3.

: it 00 0‘: " v*-0' 0“

 

 

Independent 31? 36** PF 314*
Variable n Mean SD Mean SD
Gender

Female 20 53.2 24.6 61.9 27.9
Male 28 52.3 30.6 71.3 26.3
Age

65-74 32 53.8 26.5 71.7 24.0
75+ 16 50.3 31.5 58.9 31.5
Site

Br/CO/Pr 10 71.7 28.4 81.0 20.9
Lung 38 47.6 25.9 63.9 27.6
Stage '

.Early 13 47.3 30.4 63.9 32.2
Late 35 54.6 27.2 68.7 25.3
Comorbid

0-1 15 55.5 27.2 73.2 25.4
2 8 61.2 33.7 77.0 22.2
3+ 25 48.2 26.8 60.9 28.7
Interval to Death (Days)

3 120 17 49.6 29.7 67.1 29.9
121-240 16 49.2 30.2 67.8 27.4
2 241 15 59.8 23.7 67.3 25.3

 

*PF 3M: SF-36 scores 3 months before diagnosis

**SF 36: SF-36 scores at interview prior to death

independent variables identified as statistically
significant in the ANOVA model (gender, site, physical
function 3 months before diagnosis) at the interview prior
to death and at the three month prior to diagnosis point.
At the three month point, males (n=28) had higher mean

levels of physical function (M=71.3, SD=26.3) compared to

53
female (n=20) scores (MF61.9, SD= 27.9). However, at the
interview prior to death, males showed a greater decrease in
level of function (m=52.3, SD=30.6) with lower scores than
females (m-53.2, SD=24.6) being reported. Lung cancer
patients reported lower mean levels of SF-36 physical
function scores three months prior to diagnosis (m363.9,_
SD=27.6) and at the interview prior to death (m-47.6,
SD=25.9) than those patients diagnosed with breast, colon,
and prostate cancer (see Table 3).

To interpret Table 3 it is possible to say that 71% of
the men (n=28) were able to accomplish the tasks in the SF-
36 without limitations three months before diagnosis, but at
the interval before death only 53% were able to accomplish
the tasks without limitation, a difference of 18%. Three
months before diagnosis 62% of the women (n=20) were able to
accomplish the tasks in the SF-36 without limitations and
53% reported no limitations at the interval before death, a
difference of 9%. It appears within this subsample men
reported increased limitations in physical function than
women when measured before diagnosis and at the interval
before death.

Cross tabulations between the dependent variable
physical function, measured by SF 36, IADL and ADL scores,
was done in an attempt to demonstrate a relationship between
SF-36 physical function scores and increasing levels of
dependence reported in IADLs and ADLs. Each independent

variable (gender, age, site, stage, comorbidity) was placed

54
within the model separately to determine the number of
patients reporting independence or dependence in IADLs
and/or ADLs. These cross tabulations were done to add a
descriptive dimension to the sample (see Tables 4, 5, 6, 7,
and 8).

The Chi-square test was used to determine the
significance of this cross tabulation. The Chi-square test
is used with categories of data and hypotheses about the
proportions of cases falling into the various categories.
However, because of the small sample size (n=57),
statistically significant relationships were not observed
except with gender (see Table 4). In Table 4 more men
report being independent (n=21, 36%) than women (n=3, 5%),
more women (n=16, 28%)report dependencies in IADLs not ADLs
than men (n=8, 14%), and nearly equal numbers report
dependencies in both IADLs and ADLs. It seems reasonable to
postulate that more women reported dependencies in IADLs
than men because the tasks measured in the IADLs are more
role specific for women (shopping, laundry, housework and
meal preparation). Because 56% of the cells in the cross
tabulations have expected counts less than 5 the Chi-square
may not be a valid test. Even though the Chi-square result
for gender (see Table 4) appears to be statistically
significant (p=0.00) there are 3 cells with 5 or fewer
numbers out of the total of 6 cells in the table. A similar
pattern of low numbers in the cell categories can be seen in

Tables 5, 6, 7, and 8.

55

 

 

 

 

 

Table 4.
\ nor — -r- " ‘o o 0 - i 00 o- |‘0 0' 0 ~ 0
W
Physical Function Female Male Total

n % n % n %
Independent: IADL and ADL :3 5 21 37 24 42
Dependent:IADL not ADL 16 28 8 14 24 42
Dependent: IADL and ADL 4 7 5 9 9 16
Total 23 40 34 60 57 100
Statistic DF Value Prob
Chi-Square 2 14.703 .00
Table 5.
H l i E I E E ll l E l' E i . .
IADL_and_ADLihY_A§e
Physical Function Age 65-74 Age 75+~ Total

n % n % n %
Independent: IADL 8 ADL 17 30 ‘7 12 24 42
Dependent: IADL not ADL 17 30 ‘7 12 24 42
Dependent: IADL 8 ADL 3 5 6 11 9 16
Total 37 65 20 35 57 100
Statistic DF Value Prob
Chi-Square 2 4.679 .09

 

56

 

 

 

 

 

Table 6.
W
W
Physical Function Br/Co/Pr Lung Total

n % n % n %
Independent: IADL 8 ADL 6 11 18 32 24 42
Dependent: IADL not ADL. 4 7 20 35 24 42
Dependent: IADL 8 ADL 1 2 e 14 9 16
Total 11 19 46 81 57 100
Statistic DF Value Prob
Chi-Square 2 0.995 .60
Table 7.
WWW
IADL_and_ADL_hY_SIa§e

Early Late Total
Column Percent n % n % n %
Independent: IADL 8 ADL 6 11 17 30 23 41
Dependent: IADL not ADL 7 13 17 30 24 43
Dependent: IADL 8 ADL 2 4 7 13 9 16
Total 15 27 41 73 56 100
Statistic DF Value Prob
Chi-Square 2 0.171 .92

(missing freq=1)

 

57

Table 8.

. .
gag?er_angEfefceat_cfTPatients_Esnortins_nependencies_in

 

 

Physical Comorbids 0-1 2 3+ Total
Function n % n % n % n %
Independent: IADL 8 ADL 7 13 5 9 11 20 23 41
Dependent: IADL not ADL 7 13 3 5 14 25 24 43
Dependent: IADL 8 ADL 3 5 2 4 ‘4 7 9 16
Total 17 30 10 18 29 52 56 100
Statistic DF Value Prob
Chi-Square 4- 1.075 .90

(missing freq.=1)*

 

In Table 5 it can be seen that more younger patients
report being independent or have some dependencies in IADL
but not ADL (n=17, 30%) than older patients (n=7, 12%), and
that fewer younger patients report dependencies in both
IADLs and ADLs (n=3, 5%) than older patients (n=6, 11%).
However, since younger patients are the majority (ns37, 65%)
of the patients in this subsample it would be difficult to
draw any definitive conclusions comparing the age groups.
It would appear that the majority of the younger patients
stay independent in IADLs and ADLs, with few reporting
dependencies. In the same respect, it appears that equal
numbers of older patients report dependencies in the three

categories. I would conclude from Table 5 that while

58

proportionally equal patients in the age groups in this
study reported either being independent in IADLs and ADLs or
some dependencies in IADLs, it is the older patient who is
more apt to become dependent in ADL activities. This is
significant in the development of intervention strategies.

In Table 6 the majority of the lung patients (ns38,
67%) report being independent or have dependencies in IADLs
only. Similarly, the majority of the breast, colon, and
prostate patients report being independent or have
dependencies in IADLs only (n=10, 18%) for a total of 48
(85%) of the subsample reporting independence or dependence
in IADLs in the interval prior to death. However, 14% of
the patients with lung cancer reported dependencies in IADLs
and ADLs with only 2% of the patients with breast, colon,
and prostate reporting like dependencies. An awareness that
lung cancer patients are more likely to be dependent in ADLs
is important in the development of appropriate strategies.

Patterns in Table 7 are similar to the majority of the
patients (n913, 24%) in Early stage and Late stage (n=34,
60%) reporting independence or dependence in IADLs alone for
a total of 47 (84%) of the respondents. While many late
stage cancer patients report independence in IADLs and ADLs
or restrictions in IADLs alone, it is the late stage cancer
patient who is most likely to be dependent in both IADLs and
ADLs.

The majority of the patients reporting comorbid

conditions (see Table 8), even those with 3 or more

59
comorbidities, report being independent or with dependencies
in IADLs alone (ns47, 84%). Relationships may be
significant with a larger sample size.

Preliminary conclusions drawn from these cross
tabulations on this sample size would indicate that the
majority of the patients in this study were independent in
ADLs leading to the conclusion that the focus of
interventions should be toward assisting patients with IADLs
regardless of the gender, age, site, stage, or numbers of
comorbid conditions. However, it would seem that older
(75+) late stage lung cancer patients are the most likely
individuals to report dependencies in both IADLs and ADLs
regardless of gender or numbers of comorbid conditions. A
larger sample size may either confirm or dispute these
conclusions. Also, this researcher suspects that there is
an interaction effect not measured (treatment modality
and/or symptoms experienced) which may prove to be
beneficial in explaining differences observed in physical
function prior to death.

Table 9 represents a type of sensitivity analysis
applied at the time of diagnosis combined with the interview
before death with the number of cases of patients reporting
dependencies in IADLs and ADLs compared with the SF-36
scaled scores. The purpose of this analysis is to describe
at what SF-36 scores patients will begin to report
dependencies in IADLs and ADLs. The intent of this is to

determine if this model is sensitive in predicting the

60

 

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61
levels of physical function of the elderly cancer patients
at the time of diagnosis. This information will then be
compared to the same model applied at the interview prior to
death to determine patterns of physical function and changes
in patterns over time. The sample size of used in this
table is larger (ns89) because of ongoing analysis in the
larger study and only adds to the ability to draw
conclusions about the sensitivity of this measure as a
predictor of physical function.

Preliminary analysis indicates that the majority of
patients, regardless of SF-36, scores remained independent
in ADLs (n=70, 79%) and almost half were independent in
IADLs (ns40, 45%). An additional 10 (11%) patients
described needing supervision only with ADLs to total 80-
(90%) of the patients requiring minimal assistance with
ADLs. The remainder of the patients reporting dependencies
in IADLs were evenly distributed from requiring supervision
only to requiring total physical assist (n=10, 11% for
both). It would appear that no assumptions can be made
about the IADL and ADL scores of a patient from the SF-36
scores which supports the need to use multiple measures of
physical function in determining a patients needs for
assistance.

In response to research question number 1, site (lung
cancer), gender (male), and level of physical function at
the time of diagnosis appear to be the independent variables

most significant in predicting levels of physical function

62
at the interview prior to death for the 57 participants in
this study.. It would also appear that although the majority
of patients remain independent in ADLs it is important to
note that older lung cancer patients with late stage disease
are the patients most likely to report dependencies in the
ability to perform basic activities of daily living
regardless of gender or comorbidities. This is important
for the advanced practice nurse to know in planning
intervention strategies within systems concerned with
allocation of limited resources and the appropriate
distribution of these resources.

2) Are there differences in the level of physical
function experienced by males and females with lung
or colon cancer in the months prior to their death?

Table 3 would suggest that three months prior to

diagnosis men (n=28) report higher levels of SF-36 physical
function (M=71.3, SD:26.3) than women (n=20, M=61.9,
59:27.9). However, levels of SF-36 physical function
reported by these same patients at the interview prior to
death demonstrate a larger drop in the level of physical
function for men (M=52.3, SD:30.6) compared to women
(M;53.2, 52:24.6), a decrease in mean levels of SF-36 for
men of 19 points compared to a decrease in mean levels of
SF-36 for women of 9 points. However, death appears to be
the great equalizer with SF-36 reported scores at the
interview prior to death almost equal for both men and women

(see Table 3).

63

As discussed previously, Table 4 would suggest that men
(nszl, 37%) are more likely than women (n=3, 5%) to report
independent levels of IADLs and ADLs. Also, women (nsl6,
28%) are more likely to report levels of dependencies in
IADLs, but not ADLs than men (np8, 14%). These differences
may be attributable to the measurement of role specific
items in the IADLs (laundry, shopping, housework, and meal
preparation) which for this cohort are more likely done by
women than men. Again, Table 4 also shows that men and
women report dependencies IADLs and ADLs in equal number.
Because the majority of patients in this study were
diagnosed with lung cancer it would have been beneficial to
make further distinctions based on gender for IADLs and ADLs
for these patients in order to draw definitive conclusions.

In response to research question 2 it would appear that
although the SF-36 scores for men and women are similar at
death, men report a more noticeable drop in their SF-36
scores from the time they are diagnosed with cancer until
they die. Because of the sample size it is not possible to
say conclusively that women diagnosed with lung or colon
cancer report higher levels of physical function than men
with the same diagnosis. Further examination of SF-36
scores of patients with lung and-colon cancer may lend more
insight into the differences in physical function
experienced by men and women with these diagnoses and the
significance of that gender difference as a predictor within

a risk profile.

64
Discussion

Sample

In this retrospective study, physical function scores
for 57 patients who died after completing Wave I and Wave II
interviews were reviewed to identify risk factors which
might be used to predict physical function in the period
prior to death. Higher numbers of lung cancer patients
(ns46) died than breast, colon, and prostate cancers
combined (nsll). This is consistent with the literature
(Abraham et al., 1996; Houts et al., 1988). Because of the
small numbers of patients dying from breast, colon, or
prostate cancer in this sample it will be difficult to draw
any conclusions about the relationships of age, gender,
site, stage and comorbidity as predictors of physical
function.
W

It would appear that elderly cancer patients,
regardless of gender, have similar low levels of reported
SF-36 prior to death indicating that gender has little
impact on ones ability to function. The most noticeable
gender difference in this study was that men had a greater
decrease in SF-36 (19 points) implying the need to
continually monitor patients throughout the trajectory of
cancer rather than one point in time. This is consistent
with the literature (Dudgeon et al., 1995; Kurtz et al.,
1994; Houts et al., 1988) which recommend the need of cancer

patients to receive a continuum of care as opposed to

65
addressing needs only at diagnosis or prior to death.
Gender as a predictor of physical function is a significant
consideration in having an awareness that men may report a
greater increase in limitations than women from the time of
diagnosis to the time of death, but that at death there is
probably no difference in the level of physical function
reported.
E l' J I J i 5.!

Not surprisingly, the majority of the patients who died
in this study were in the latestage of cancer (ns41), and
even more were diagnosed with lung cancer (n346). The late
stage diagnosis along with the large number of patients
diagnosed with lung cancer is consistent with at least one
study (Given et al., 1994) which reported a short survival
rate for lung cancer patients. However, this shortened
survival (less than 6 months) made it difficult to draw
conclusions about the site of cancer impacting the reported
physical function scores. In this study, lung cancer
patients reported lower levels of physical function at the
time of diagnosis (SF-36=63.9) compared to breast, colon,
and prostate patients (SF-36=81.0) and reported lower SF-36
scores prior to death (47.6) than the others (71.7) (see
Table 3). In at least one other study (Houts et al., 1988),
the unmet needs reported were ADLs in nonwhite, younger,
breast cancer patients. No comparable conclusions can be
made from this study because of the small sample size

(Br/Co/Pr ns11). It would appear that site of cancer (lung)

66
would be a useful predictor of physical function within a
risk profile.
WWW
Erinr_tn_neath
} SF 36 levels of function reported at diagnosis compared
to SF 36 levels of function prior to death have not been
discussed in the literature. In this study, the level of
function reported at diagnosis in all cases was higher (SF-
36-67) than the level of function reported at the interview
prior to death (SF-36=49) for those dying within 240 days of
the interview and those dying more than 241 days of the last
interview (SF-36-60) (see Table 3). Most significant
changes in level of function occurred, as previously
discussed, between males and females. Also, as previously
discussed, lung cancer patients had lower levels of function
reported at the time of diagnosis and at the interview prior
to death than those patients diagnosed with breast, colon,
or prostate cancer. However, the specific reasons for these
differences remain unclear and deserve closer scrutiny in
order to develop appropriate intervention strategies.
Possible reasons could include: the number of comorbid
conditions present (Satariano, 1993); the late stage at the
time of diagnosis (Given et al., 1994); or the advanced age
of those diagnosed with lung cancer in addition to comorbid
conditions (Yancik et al., 1996) who were recruited into
this study, as well as the type of treatment received.

Conclusions that could be drawn about interval of time

67

before death for the patients in this study are that SF-36
physical function scores are the same 6 months before death
as they are at 3 months before death. The usefulness of
this information is that it would appear the limitations in
function reported by the SF-36 score .
reach a plateau. Further research with the participation of
caregivers in the reporting of SF-36 scores for patients at
intervals of 30, 60, and 90 days before death might prove
beneficial in the development of appropriate interventions.
WW

Within this small sample size it would appear that
predictors of physical function include: gender, sitg_gf
cancer, and 1e1e1_gf_fnngtign at the time of diagnosis.
Evidence of this from the data are that male patients and
those with lung cancer report larger drops in the levels of
physical function from the date of diagnosis until the
interview prior to death. A more in-depth look at the
gender of those patients in this study who died from lung
cancer is suggested. One source in the literature (Sarna,
1994) suggests that women with lung cancer have better
survival rates than men, possibly related to better
functional status at the time of diagnosis. This researcher
suspects there are interaction effects related to other
factors (comorbidity, age, stage, interval before death,
treatment and symptoms) which might be used as predictors of
physical function and that would be more statistically

significant with a_1arger sample size. Sarna (1994)

68

suggests that the presence of comorbid disease influence
physical function, that social factors (gender, financial
impact, and social support) have been linked to greater
unmet needs, and that differences in previous levels of
function may be relevant in determining the level of
satisfaction rather than functional status. Clearly, other
factors deserve closer scrutiny in determining the full
range of factors impacting physical function in the
terminally ill elderly cancer patient.
W
W

Although age, stage, interval before death, and number
of comorbidities were not statistically significant as
predictors of physical function prior to death, the change
that occurs in level of SF-36 physical function from the
time of diagnosis to the interview prior to death deserves
attention. It is this change in physical function that
patients may be most aware of and which may contribute to
feelings about their diagnosis and participation in
treatment. An awareness on the part of health care
providers about this change in physical function can
facilitate the development of interventions proactively.
Gender differences and site differences in levels of
reported SF-36 functiOn have already been discussed. Other

differences noted will be discussed at this time.

69

W

Younger patients (those aged 65-74) report higher mean
levels of SF-36 physical function (M971.7, SD=24.0) compared
to older patients (those aged 75+) SF-36 physical function
scores (HP58.9, fins 31.5) at the time of diagnosis in this
study (see Table 3). SF-36 physical function scores
reported at the interview prior to death for both age groups
were similar (age 65-74, u953.8, SD=26.5; age 75+, u=50.3,
SD331-5). with a more significant change over time in the
two scores for younger than older patients. The
relationship of this change to site of cancer cannot be
determined.from this data. However, it is worth noting that
the oldest patients are already functioning at compromised
levels at the time of diagnosis and may have less noticeable
increases in limitations or dependencies. Lower levels of
SF-36 physical function would suggest some limitations in
ability to perform IADL activities in the older patients at
the time of diagnosis. Table 9 supports the need to access
physical function with the use of multiple tools to
determine physical function and help to determine
differences related to age. The determination of this
correlation in the development of appropriate intervention
strategies is important. The literature (Whittle &.
Goldenburg, 1996) supports this contention because the
successful performance of IADL activities is fundamental in
maintaining noninstitutionalized, independent living

arrangements for the elderly. It would seem reasonable to

7O

assume that understanding this relationship between
independence and dependency could lead to the development of
nursing interventions that would support adaptations in
physical function to maintain independent living for as long
as possible in end of life. It would appear that these
interventions would be most appropriate for the younger-old
because of their higher SF-36 physical function scores at
the time of diagnosis.
W

Within this study, SF-36 physical function scores for
early (H963.9, SD332-2) and late (M;68.7, 59:25.3) stage
cancers were similar except that those with early stage
cancer had slightly lower scores than late stage cancer
patients. Early stage cancer patients (ngl3) reported a
slightly larger drop in levels of physical function (16.6
points) compared to late stage cancer patients (n:38,14.1
points). Because the sample sizes are dissimilar and the
difference is small this may not be a significant
observation. A larger sampling might give some insight into
reasons for the difference. Explanations might include the
possibility that: patients with early stage cancer had more
comorbid conditions and therefore lower levels of physical
function; patients diagnosed with early stage cancer were
receiving more aggressive treatment modalities impacting
their functional abilities; or, age and gender may be
factors influencing the level of physical function in those

individuals diagnosed with early stage cancer. It might be

71

useful to know the site of cancer for these early stage
patients and to know the rapidity of the decline in physical
function they experienced. Before conclusions can be drawn
about the impact of stage on physical function a larger
sample size needs to be evaluated. Treatment modalities and
symptoms experienced for patients within both stage
categories may give some insight into the differences in
physical function experienced. Questions to answer include:
are the early stage cancer patients receiving more
aggressive treatment modalities and are they experiencing a
more rapid decline in physical function than late stage
cancer patients.
W

Within this study, patients with at least 2 or more
comorbid conditions accounted for the majority (n=39, 70%)
of the patients reporting comorbidity. This is consistent
with the literature (Yancik et al., 1996; Sarna, 1994) which
reports higher numbers of comorbid conditions reported with
advancing age. Other studies have demonstrated increased
service utilization for patients with higher numbers of
comorbid conditions (Blaum et al., 1994). Although this
researcher did not specifically look at service utilization
as a covariate it would seem reasonable to conclude that
patients with higher numbers of comorbid conditions and
service utilization would also have need for more assistance

with physical function.

72

One study reported that women diagnosed with breast
cancer who had 2 or more comorbidities were more likely to
die from their breast cancer (Satariano, 1993). Although
few breast cancer patients were available in this study, the
majority of patients dying reported 2 or more comorbid
conditions. This suggests that the cause of death for these
patients is specifically related to the cancer diagnosis,
specifically related to the comorbid condition, an
exacerbation of the comorbid condition related to the
treatment modality, or failed treatment related to the
comorbid condition. While specific facts for breast cancer
patients are not available in this study, comorbidity
appears to have a similar impact as the Satariano (1393)
study and should be considered in future work to determine
the specific relationship of comorbidity to death and as a
predictor of physical function in the period prior to death.
W

SF-36 physical function scores in this sample were
identical (M;67.1, SD=25.3 to 29.9) when measured at the
time of diagnosis for all three levels of intervals measured
(see Table 4). SF-36 physical function scores were also
identical at the interview prior to death for patients who
died 5 120 days (M649.6, SD=29.7) and those who died 121-240
days (MF49-2. sn=30.2) after their last interview. Slightly
higher levels of SF-36 physical function (MF59.8, 52:23.7)
were reported by those patients who died 2241 days after the

last interview and would be expected to be higher

73
considering the length of time until death. The usefulness
of the interval before death as a predictor of physical
function within this sample size is limited with apparently
no differences in reported levels of physical function at
the three intervals of time.

In summary, it would appear that gender (men), site of
cancer (lung) and level of physical function at the time of
diagnosis are statistically significant predictors of
physical function for elderly terminally ill cancer
patients. What we don't know is how treatment modalities
and symptoms experienced as a result of treatment (or lack
of treatment) impact the physical function of a patient
prior to death or if the treatment or symptoms contribute to
limitations in physical function. Because of the small
sample size generalizing to a larger population should be
done with caution. ‘

Discussion of Results within the Conceptual Framework

The results of this study support the adapted Predictor
of Physical Function Model framework in that gender, site of
cancer, and prior level of function were shown to be
statistically important predictors of SF-36 physical
function. However, a better representation of the
relationship of the three measurements of physical function
would be demonstrated through the use of a Venn diagram. In
this manner the SF-36, IADL and ADL scores could be

represented as separate and distinct (to show their unique

74
characteristics) and overlapping (to demonstrate their
similarities) (see Figure 3)..

Tables 9 refutes the demonstration of a relationship of
the SF-36",IADLs, and ADLs within the four categories
proposed. That is, as SF-36 scores decrease predictions can
be made about limitations in IADLs and ADLs. It is
suggested that the revised model and statistical techniques
be applied to a larger sample size with the inclusion of
treatment modalities and symptoms as covariates. In this
way, interaction effects can better be determined and a
possible valuable risk factor tool can be developed to
assist the advanced practice nurse in developing appropriate
strategies for the elderly terminally ill cancer patient.
W

By the year 2030 it has been estimated that those over
the age of 65 will represent 15-18% (Whittle & Goldenberg,
1996) or as high as 21% of the population. Health care
services previously provided within acute care settings are
increasingly becoming the responsibility of patients and
their caregivers in home care settings. It has also been
shown that it is the loss of physical function which is a
primary factor in forcing institutionalization of elderly
individuals. For the elderly population it has been
suggested that nursing interventions to prevent
institutionalization must promote and support functional
adaptation methods (Whittle & Goldenberg, 1996). The

advanced practice nurse is in a unique position to assist

75
CONCEPTUAL MODEL (revised)
An adaptation of the Family Care Process Model by Given and given

Physical Function

Patient Characteristics SF‘36

 

 

Age

Cknmn

Site of cancer
Stage of cancer ADL Outcomes
Comorbid conditions
Prior level of function

i /

/'
'— Patient Care Processes _l
(Symptom Management) I IADL

V

 

 

 

 

P‘P‘PPNT‘

 

 

 

 

Emil. Predictors of Physical Function Model (Revised).

the terminally ill elderly cancer patient and family
caregivers in the development of appropriate strategies that
promote function and maintain quality of life. Knowledge of
predictors of physical function within this population will
assist the advanced practice nurse to develop these
strategies and interventions.

The advanced practice nurse will be expected to assume
greater responsibility in the managed care setting to
provide cost effective, competent care. For the geriatric
population new models of delivery management might include

brokerage (with assessment, planning, and packaging of

76
community resources) or waiver programs to purchase needed
services (Strumpf & Paier, 1993). As part of these models
the advanced practice nurse will be expected to accurately
assess the needs of a given patient. Predictors of physical
function in the form of a risk factor profile for the
elderly terminally ill cancer patient will assist the
advanced practice nurse in the assessment process.

Based on findings from this study, a risk factor
profile could be developed to assist the advanced practice
nurse in the development and implementation of strategies.
Factors to include in the risk factor profile would be
gender, site, physical function scores at the time of
diagnosis as well as stage and comorbidities. From this
study, advanced practice nurse should be able to conclude
that any patient with late stage lung cancer who is 75 years
old or older will be dependent in ADLs. Other conclusions
that may be helpful in determining the needs of a patient
are that men notice a greater decline in SF-36 function and
that lung cancer patients start out with lower levels of
function and have lower levels of function prior to death
than patients with breast, colon, and prostate cancer. This
knowledge will require the preparation of caregivers to
either learn to provide the care themselves, to assist the
caregiver and patient in making decisions about home care
services or to determine the need for nursing home
placement. Most significantly, the advanced practice nurse

must be aware that single measurements of physical function

77
may give incomplete information about an individuals
abilities or needs. Instead, the use of the SF-36, IADLs
and ADLs will give a multidimensional assessment of physical
function related to basic needs (ADLs), needs with gender
specific differences (IADLs), and quality of life components
(SF-36).

The counseling of patients at the time of diagnosis
would appropriately include information regarding expected
declines in function and suggestions for adaptation
strategies if the patients wish to remain home. Women are
more likely than men to require assistance with IADLs that
will require adaptation strategies for not only the women
but for their male caregivers who might be ill prepared to
assume some of the IADL tasks.

Advanced practice nurses should be ready to assess and
diagnose the physical function needs of the elderly
terminally ill cancer patient. Advanced practice nurses
must have an awareness of services provided at referral
agencies and make appropriate referrals when necessary.
Advanced practice nurses must also be able to determine when
the needs of the patient are no longer being met by the
caregiver at home by providing a continuum of care that
includes intermittent determinations of SF-36, IADL and ADL.
physical function.

The ability of the advanced practice nurse to predict
physical function in the terminally ill elderly cancer

patient will promote the development of planning strategies.

78
Planning strategies derived from appropriate assessments
will ensure that appropriate referrals are made to maintain
function and quality of life in the end of life. Planning
strategies will benefit family caregivers who may be faced
with making difficult choices. The ability to predict
levels of function will allow the planning and
implementation of interventions in a proactive rather than
reactive manner.

The advanced practice nurse is uniquely positioned to
use the predictors of physical function for the terminally
ill elderly cancer patient in a health promotion context.
This can best be accomplished by differentiating normal age
changes from disease processes impacting physical function.
Patients and family members can then be educated about'
skills that will promote health related to normal changes in
aging versus adaptations necessary because of the cancer
itself. Some examples of normal changes with aging which
may be misinterpreted as declines in physical function from
the cancer include loss of visual acuity or hearing
deficiencies. Both of these changes may make the elderly
person feel less able to move about or participate in
activities as they had before and be totally unrelated to
their cancer diagnosis. The appropriate strategies for the
advanced practice nurse would be to assess for cataracts,
presbyopia or presbycusis and provide the appropriate
education and referrals. The advanced practice nurse should

provide the patient with a thorough physical exam to

79
determine any physical changes associated with aging and
suggest appropriate interventions.

Perhaps the most significant use of predictors of
physical function by the advanced practice nurse will be as
a patient advocate in assisting the patient to obtain
treatment choices in end of life care. Three possible goals
of care have been identified for treating those diagnosed
with cancer. Included in these goals are curing the
disease, increasing survival time, and improving quality of
life for terminally ill cancer patients (Greisinger et al.,
1997). Terminally ill patients who were interviewed in the
study by Greisinger et al. (1997) were able to identify
their most highly rated concerns. Included were
existential, spiritual, family, physical, and emotional
concerns. The researchers were able to identify specific
needs and make appropriate referrals after the interviews
were complete. In the same manner, an advanced practice
nurse who is equipped with knowledge that predicts physical
function will be able to discern the patients most important
interests related to physical function. The advanced
practice nurse can then advocate for palliative care the
patient deems most appropriate based on presented
information.

By using a risk factor profile that predicts physical
function the nurse can provide education materials or
information to the patient and family. Preliminary

suggestions for a risk factor profile would include the

80
assessment of SF-36, IADLs and ADLs, the cancer diagnosis,
and stage, the patients age and gender, the number of
comorbidities, the treatment choices and symptoms
experienced as well as the living arrangements, marital
status and community services available. A scoring system
could be developed, the profile could be administered
throughout the course of care with the intend of identifying
those at risk for highest needs in relation to physical
function. If the nurse tests the patients level of function
at the time of diagnosis, potential areas of concern
requiring further information related to physical function
can be determined. In following the Predictor of Physical
Function Model the advanced practice nurse might only have
time to administer the SF-36 tool to then be able to draw
conclusions about a persons ability to engage in IADL and
ADL activities based on the SF-36 score. Someone who
describes limitations in ability to climb one flight of
stairs may not be able to do the laundry if the equipment is
in the basement, but they would be able to if the
washer/dryer were on the main floor. Someone who is limited
in their ability to bend, kneel, or stoop may not be able to
get out of bed. A person who describes limitations in the
ability to walk one block may not be able to shop for
themselves. Clearly, these examples indicate areas that
require education for both the patient and family to

maintain daily living needs.

81

The advanced practice nurse must also be able to make
appropriate referrals to other services, a task which could
be enabled through the use of a model predicting the
physical function of the terminally ill elderly cancer
patient. This is especially important if the patient and
caregiver want the patient to remain in the home setting in
the end of life. Based on this study the patients most
likely to require referrals are older, late stage lung
cancer patients, male patients, or female patients for IADL
assistance. Service referrals might be appropriately made
to obtain meals, chore services, assistance with personal
care, and respite care for the caregiver. Within the
context of limited health care budgets referrals that are
suitable may ultimately save the patient and caregivers
limited monies.

The advanced practice nurse can effectively function in
the role of case manager through the use of a variety of
tools. Predicting the level of function in a terminally ill
elderly cancer patient, especially older lung cancer
patients, and conveying the information to other health care
providers in a collaborative manner may assist them in
allocating services. It may be up to the advanced practice
nurse to decide that the appropriate care for the patient
can no longer be provided at home, convey this information
to the primary care physician, and collaborate with agencies

to appropriately seek placement of the patient.

82

The role of the advanced practice nurse it the
development of health policies cannot be understated.
Knowledge of physical function needs of the elderly
terminally ill cancer patient will allow the nurse to make
appropriate recommendations to congress persons, senators
and support current legislation. Hand in hand in the role
of the advanced practice nurse as a policy maker is the role
of the advanced practice nurse as a researcher.
Understanding the needs of a patient population through
research based knowledge can only assist the nurse in
developing interventions specific to individual needs.

A holistic approach to health care makes it imperative
that the advanced practice nurse take into consideration all
aspects of the patient in developing care interventions.

The Predictor of Physical Function Model takes into
consideration features of the patient that may impact their
ability to-perform including age, gender, site of cancer,
stage of cancer, comorbidity, and prior level of function.
The value of predicting the physical function of the elderly
terminally ill cancer patient lies not only in providing
adequate care to the patient, but in assisting the caregiver
to manage during a difficult time, and in the allocation of
limited health care services.
Imlicationmnmm

Because of the small sample size (n=57) the development
of a risk factor profile as predictors of physical

functioning in the terminally ill cancer patient is limited.

83
However, opportunities for further research remain. The
literature review reveals limited information about the
physical functioning of terminally ill elderly cancer
patients. Therefore, suggestions for further research
include:

a) Extended research using the same model (revised)
and statistical techniques in a larger patient
population from the same data base, and observe
changes over time. Incorporating all patients who
have died during the entire study may reveal more
statistical significance in all covariates. It may
also provide a larger percentage of patients dying

- from breast, colon, or prostate cancer to see if
the covariate factors significantly impacting their
physical function levels are different than those
for lung cancer patients.

b) The inclusion of symptgm_experience as a covariate
in the equation to determine the impact of the
symptoms on the physical function of the
individuals involved. This would add important
depth in the development of strategies to assist
the patients and families in making end of life
treatment decisions and choices.

c) A study that includes treatment_mgdalit¥ as a
covariate including the place within the treatment
cycle, the aggressiveness of the treatment and the

impact on physical function. This too would

d)

f)

84
influence the development and implementation of
nursing interventions and end of life choices made
by patients and families.
A study that addresses physical function
specifically as a quality of life issue with
implications for treatment choices including
palliative care as a treatment choice and
complications of treatment impacting physical
function. Looking at the congruence of patient
choices and caregiver choices should be included.
Further study of the relevance of prior level of
physical function to the level of function prior to
death. It would be interesting to note if people
with limitations at the time of diagnosis of cancer
related to other comorbid conditions have already
adapted to the limitations and therefore have
higher physical function scores prior to death.
The relationship of comorbid conditions to the
physical functioning of the terminally ill elderly
cancer patients more specifically defined. For
example, it would be interesting to know if
patients with comorbid conditions such as heart
disease and hypertension have higher, lower, or
similar levels of physical function than those with
pulmonary or neurological comorbidities. This
information would add another dimension to the risk

factor profile and provide the advanced practice

9)

h)

i)

85
nurse with even greater knowledge about suitable
interventions.
A study about the caregivers needs of patients with
limited physical function and the benefit to them
of using a risk factor profile predicting physical
function. While it may be useful for the nurse to
implement interventions, outcomes of care that
benefit the caregiver and patient will be most
useful. The study should include: cost savings for
the caregiver, patient, and health_care system;
decreased reporting of stress and anxiety for the
caregiver; and, increased reported levels of
satisfaction for bother the caregivers and the
patient. I would support the development of a risk
factor profile that provides the patient and
caregiver with information that they can use to
determine the care most appropriate to meet the
needs of their value system.
A study that addresses more efficient service
utilization for those patients who have been
evaluated using a risk factor profile for physical
function in the end of life. This is another
measurement of the outcome of care provided by the
advanced practice nurse.
A study of the concepts of sick roles and
disability specifically with older men with late

stage cancer compared to older women with late

86
stage cancer to determine if there indeed is sick
role behavior which could be used as a predictor of
physical function.

Increasing research based knowledge will add
credibility to the decisions that will allow the advanced
practice nurse to deliver cost effective care is imperative
in today's changing health care market. Patients and
families are becoming more knowledgeable and informed about
their choices in care. It is important that advanced
practice nurses who are assuming primary care positions
provide services that are not only appropriate, but based on
sound, nursing research.

Summary

Clearly, a key role of the advanced practice nurse
related to physical function in the care of the elderly
terminally ill cancer patient is that of the assessor. The
advanced practice nurse is in a unique position to utilize
tools such as the SF-36, IADLs and ADLs in conjunction with
advanced knowledge and cues obtained from the patient to
develop appropriate strategies of care. The relationship
between end-of-life care and quality of life issues as they
relate to physical function for the geriatric cancer patient
must be examined. The potential incongruent perception
between what the health care system is willing to provide
and what the elderly desire in the end-of-life must be
identified through research. This study focused on

predictors of physical function in the terminally ill

87
elderly cancer patient. Independent variables that proved
to be statistically significant included site of cancer,
gender, and prior level of function.

A model was presented that would demonstrate the
relationship of the independent variables (age, gender,
site, stage, comorbidity, and prior level of function) to
the dependent variable physical function measured using the
SF-36, IADLs and ADLs. It was proposed that four categories
of physical function could be developed and that patients
could be placed in one of these categories based on their
levels of reported function. Unfortunately, because of the
small sample size it was not possible to show statistical
significance by Chi-Square for cross-tabulations run on the
covariates with the dependent variable. Clearly, there was
not a relationship of progression in physical function from
independence to dependence that can be predicted through the
use of the four proposed categories.

It does appear that in this sample male patients are
more likely to report greater decreases in levels of
physical function than female patients when measured at the
time of diagnosis and the interview prior to death. Lung
cancer patients, male or female, appear to have lower levels
of physical function at both measurement intervals. The
most important finding from this is the value of measuring
physical function at the time of diagnosis in the
development of appropriate strategies. This certainly

should become a standard of practice in each and every

88
oncology office. Without this information it is impossible
to draw any conclusions about the specific needs of
individuals.

Certainly, the needs of the elderly will increase as
the cohort lives longer and grows larger in number. It is
essential that current researchers study the needs of this
population of people to provide the most appropriate care
possible. The trend for elderly to make end of life choices
such as physician assisted suicide make it imperative that
health care providers identify and address the needs of
these individuals, providing them with more choices.

Quality of life must become a priority in the delivery of
care to people who are nearing the end of their life. No
longer can we afford to be complacent in the delivery of
care as we race toward the millennium. The demand for
changes in health care place the burden of change on
providers of care. Advanced practice nurses accustomed to
providing compassionate care must assume a lead role in the
delivery of research based, collaborative care to a changing

marketplace.

 

LIST 01" REFERENCES

LIST OF REFERENCES

Abraham, J. L., Callahan, J., Rossetti, M., 5 Pierre,
L. (1996). The impact of a hospice consultation team on the
care of veterans with advanced cancer. lcnzn31_cf_£a1n_anc

Sxmntnm_nananementi_12(1), 23-31.

Albertsen, P. C., Fryback, D. G., Storer, B. E., Kolon,
T. F., & Fine, J. (1996). The impact of co-morbidity on
life expectancy among men with localized prostate cancer.

of_urnlogxl_156, 127- 132.

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APPENDIX A

Instruments

94

Comorbities

95

NINR/NCI "AVE 11 Pmou w/o (ransom Tm ID _ _ _ _IINT

PHYSICAL. HEALTH PATIENT

Following are a list of illnesses individuals often have. Please indicate if you have been
diagnosed by a health care professional (HEP) that you W (check one for
each condition).

1. Has a health care professional told you that you have high blood pressure or
hypertension? (check one)

_ Yes “(1)
_ No (2) .
_ HUM/Refused (9)

2. Has a health care professional told you that you have diabetes? (check one)
_ Yes (1)
_ No (2)
_ [KIM/Refused (9)

3. Has a health care professional told you that you have cancer or a malignant tuner. other than
the cancer for which you currently are being treated? (check one)

_ Yes (1)
__ No (2) '
_ [KIM/Refused (9)

4. In which organ or part of your body did your (most recent) cancer start? (write in)

 

5. Not including astlma. has a health care professional told you that you have chronic lung
disease such as chronic bronchitis or emlwseua? (check one)

__ Yes (1)
_ No (2)
__ [KIM/Refused (9)

6. Has a health care professional told you that you had a heart attack. coronary heart disease.
angina. congestive heart failure. or other heart problems? (check one)

_ Yes (1)
_ No (2)
__ MINA/Refused l9)

 

96

NINRINCI WAVE II Pmm w/o CMEGIYER Tween: 10 _ _ _ [INT

7. Has a health care professional told you that you had a stroke? (check one)

_ Yes (1)
_ No '(2)
__ DOOM/Refused (9)

8. Have you seen a health care professional for'enotional. nervous. or psychiatric problems?
(check one)

_ Yes (Go to 8:.) (1)
_ No (Go to 9) (2)
_ [KIM/Refused (9)

88. Have you had any of these problems in the last 12 sonths? (check one)

_ Yes (1)
_ No (2)
_[K/NAIRefused (9)

9. During the last 12 months. have you seen a health care professional specifically for arthritis
or rheumatism? (check one)

_ Yes (1)
__ No (2)
__ DK/NA/Refused (9)
10. Have you fractured your hip? (check one)
_ Yes (1)
__ No (2)
_ BUM/Refused (9)
11. Do you have any other major health problens which you haven? t told me about? (check one)

_Yes (60 to 11a) (1)
:No (Go to Next section) (2)
_DK/NA/Refused (9)

11a. If yes. what are they? (write in)

 

 

 

 

 

97

SF-36

Physical Function

SL8

NINRINCI HAVE II Patron u/o Cmtvo: Tumour 10 _ _ _ _IINT

INSTRUMENTAL ACTIVITIES 0F DAILY LIVIMS PM THE PATIENT .

1. The following questions are about the activities you might do during a typical day. I am going
to ask you about-your ability to perfbrm these activities currently. Does your health limit
your ability to do activities? If so. how much? (Check one for each question.)

(Interviewer: Are you currently limited in because of your health? We are interested in your
ability to do these activities.)

a. flgdenate_agt1y111es. such as moving a table. bowling. or playing golf?

No. not limited at all (1)
Yes. limited a little (2)
Yes. limited a lot (3)

b. ngnnnus_ast1y111es. such as lifting heavy objects or participating in strenuous
sports?

No. not limited at all- (1)
Yes. limited 8 little (2)
Yes. limited a lot (3)

c. Lifting or carrying groceries?
No. not limited at all (1)

Yes. limited a little (2)
Yes. limited a lot (3)

d. Climbing sexenal flights of stairs?

No. not limited at all (1)
Yes. limited a little (2)
Yes. limited 8 lot (3)'

e. Climbing one flight of stairs?

No. not limited at all (1)
Yes. limited a little (2)
Yes. limited a lot (3)-

f. Bending. kneeling. or steeping?
No. not limited at all (1)

Yes. limited a little (2)
Yes. limited a lot (3)

5T9

MIMR/NCI HAVE II Pmm w/o CAREGIVER TELEPKNE 10 [INT

9.. "Blklng one_block?

No. not limited at all (1)
Yes. limited 8 little (2)
Yes. limited a lot (3)'

h. Walking Wests?

No. not limited at all (1)
Yes. limited a little (2)
Yes. limited 8 lot -(3)

1. . walking W?

No. not limited at all (1)
Yes. limited a little (2)
Yes. limited a lot (3)

J. Bathing or dressing yourself?

No. not limited at all (1)
Yes. limited a little (2)
Yes. limited a lot (3)

2. How much overall physical pain have you had during the past four weeks? (check one)

None (1)

Very Mild (2)
Mild (3)
Moderate (4)
Severe '(5)
Very Severe. (6)

3. During the past four weeks. how much did pain interfere with your normal work
(including both work outside the home and housework)? (check one)

Mot at All (1)
Slightly (2)
Moderately (3)
Quite a Bit (4)
Extremely (5)

(GO TO NEXT PAGE)

 

 

100

IADLs

101

MIMR/NCI HAVE II Panon w/o CAREGIVER Tumour m

 

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

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

IRIYE SELF - (do not need help of another person in any part of this activity)
(Go to question 7) (1) '

EED SUPERVISIW (NLY - (require another person. present during activity to watch
the patient in case of problems - do not regularly assist) (Go to 6b) (2)

DEED 50E PHYSICAL HELP — (require others to drive and the presence of another
tiring all or part of this activity) CARE RECIPIENT PARTICIPATES (Go to 6b) (3)
lEED TOTAL PHYSICAL HELP - (need another person to drive)

CARE RECIPIENT DOES NOT PARTICIPATE (Go to 6b) (4)

MT APPLICABLE (others have always done this) (Go to 7) (5)

WREFUSED (9)

 

102

NINR/NCI HAVE II PAnon v/o m Team: 10 __ _ __ [1m

7b. Is the reason for this help related to your (check one)

_ Cancer or cancer treatment (60 to 7c) (1)
Other health problem(s) (Go to 7c) (2)

: weenlsea (9)

7c. If someone helps you with transportation (check all that apply)
_ primary caregiver (1) (Go to 7d) '__ umaid family (5) (Go to 7e)
_ paid family '(2) (Go to 7f) _ (maid friends/others (6) (Go to 7e)
__ paid friends/others (3) (Go to 71') _ unpaid professional (7) (Go to 7e)
_ _ MA/Refused (9)

paid professional (4) (Go to 70

7d. If the primary caregiver helps with transportation

(1) In the past week. how many times did he/she help with transportation?
(write in) - '

 

Times per week

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

Minutes each time

 

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

7e. If other unpaid helpers (faily. friends. or professionals) help with
transportation

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

' Times per week

 

(2) Approximately how long in mimtes each time did these unpaid others helpwith
transportation? (write in)

Minutes each time

 

a

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

 

 

 

103

NINR/NCI HAVE II PATIENT w/o CAREGIVER TELEPlfllE ID IINT

7f. If other paid helpers (family. 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) Approximately how long in minutes each time did these paid others help with
transportation? (write in)

Minutes each time

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

 

8) LAUNUZY-

Ba. With regard to laundry. would you say that you (check one)

ARE INDEPENDENT - (do not need help of another person in any part of this activity) ’
(Go to question 9) (1)

NEED SUPERVISION ONLY - (require another person present during. activity to watch
the patient in case of problems - do not regularly assist) (Go to 8b) (2)

NEED son: PHYSICAL HELP - (require physical help and'the presence of another during
all or part of this activity) CARE RECIPIENT PARTICIPATES (Go to 8b) (3)

NEED TOTAL PHYSICAL lELP - (need another person to carry out this activity)
CARE RECIPIENT DOES NOT PARTICIPATE (Go to 8b) (4)

OTHERS HAVE ALHAYS OWE THIS (80 to 8b) (5)
NAIREFUSED (9)

8b. Is the reason for this help related to your (check one)
Cancer or cancer treatment (60 to BC) (1) 1

Other health problem(s) (Go to BC) (2)
NAIRefused (9)

 

104

NINR/NCI RAVE II PAiIsn lilo CARESIVER TELEPHNE ID _ _ _ _‘IINT

_—————

8c. If smeone helps you with laundry (check all that apply)

 

_ primary caregiver (1) (Go to 8d) _ unpaid family (5) (Go to Be)

_ paid family (2) (Go to 81’) _ unpaid friends/others (6) "(Gate 8e)
_ paid friends/others (3) (Go to (if) _ unpaid professional (7) (Go to Be)
_ paid professional (4) (Go to 81') _ NAlRefused (9)

Bd. If the primary caregiver helps with laundry
(1) In the past week. how many times did helshe help with laundry: (write in)

’ Times per week

 

(2) Approximately how long in minutes each time did helshe help with laundrfl
(write in)

 

Minutes each time

 

(Interviewer: If patient doesn't know. then ask them to estimate as best they can.)
8e. If other unpaidhelpers (family. friends. or professionals) help with laundry

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

Times per week

 

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

Minutes each time

 

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

(1) In the past week. how many times 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)

Minutes each time

 

 

105

NINR/NCI HAVE II PATIENT wlo CARECIVEA Tarzan: ID _ _ _IINT

(Interviewer: If patient doesn't know then ask them to estimate as best they can.)
9) SIDPPIMS: Includes all types of purchases.
9a. With regard to shopping. would you say that you (Check one)

ARE IIIIPEMENT - (do not need help of another person in any part of this activity)
(60 to mestion 10) (1)

 

NEED SUPERVISION (NILY - (require another person present during activity to watch
the patient in case of problems - do not regularly assist) (Co to 9b) (2)

NEED SUE PHYSICAL IELP - (require physical help and the presence of another «bring
all or part of this activity) CARE RECIPIENT PARTICIPATES (Go to 9b) (3)

)EED TOTAL PHYSICAL )ELP - (need another person to carry out this activity)
CARE RECIPIENT DIES )le PARTICIPATE (Go to 9b) (4)

 

OTHERS HAVE ALHAYS DIME THIS (60 to 9b) (5)
NA/REFUSED (9)
9b. Is the reason for this help related to your (check one)

__ Cancer or cancer treatment (60 to 9c) (1)

Other health problem(s) (Go to 9C) (2)
NA/Refused (9)

9c. If someone helps you with shopping (check all that apply)

_ primary caregiver (1) (60 to 9d) _ unpaid family (5) (Go to Be)

_ paid family (2) (Soto 9f) _ unpaid friends/others (6) (Go to 9e)
_ paid friends/others (3) - (Co to 9f) _ unpaid professional (7) (Go to 9e)
_ paid professional (4) (Go to 9f) _ NAIRefused (9)

 

9d. If the primary caregiver helps with shopping
(1) In the past week. how many times did helshe help with this shopping? (write in)

Times per week

 

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

Minutes each time

 

 

106

NINRINCI HAVE II PAnan lilo CAREGIVER Tumour _ _ _ _

___——._

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

9e. If other unpaid helpers (family. friends. or professionals) help with shopping

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

Times per week

 

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

Minutes each time

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

9f. 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 eachytime did these paid others help with
shopping? (write in)

Minutes each time

 

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

(80 T0 NEXT PAGE)

 

 

 

107

NINR/NCI HAVE II PAlIan w/o CARESIVER Tam): ID _ _ _ _IINT

10) W: This includes picking up. dusting. light cleaning. vacuiming. ‘or doing
dishes. '

10a. With regard tohousework. would you say that you ... (check one)

ARE 1m - (do not need help of another person in any part of this activity)
(60 to question 11) (I)

 

NEED SUPERVISIm MY - (require another person present during activity to watch
the patient in case of problems - do not regularly assist) (Go to 1%) (2)

)EED SUE PHYSICAL IELP — (remire physical help and the presence of another (tiring
all or part of this activity) CARE RECIPIENT PARTICIPATES (Go to 10b) (3) .-

NEED TOTAL PHYSICAL HELP - (need another person to carry out this activity)
CARE RECIPIENT DIES NOT PARTICIPATE (Go to 1%) (4)

 

OTHERS HAVE ALHAYS WE THIS (60 to 100) (5)

NA/REFUSED (9)

10b. Is the reason for this help related to your (check one)

Cancer or cancer treatment (Go to 10c) (1)
Other health problem(s) (Go to 10c) (2)
NA/Refused (9) .

10c. If someone helps you with housework (cheek all that apply)

 

_ primary caregiver (1) (Go to 10d) _ unpaid family (5) (Go to 10c)

__ paid family (2) (Go to 10f) _ unpaid friends/others (6) (Go to 10e)‘
__ paid friends/others (3) (Go to 10f) _ unpaid professional (7) (Go to 10c)
_ paid professional (4) (Go to 10f) _ NA/Refused (9)

10d. If the primary caregiver helps with housework
(1) In the past week. how many times did helshe help with housework? (write in)
Times per week A

 

(2) Approximately how long in minutes eachItime did helshe help with
housework? (write in)

Minutes each time

 

108

NIMR/NCI HAVE II PATIENT lilo CAREGIVER TELErium ID __ __ _ _IINT

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

(1) 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 umaid others help with
housework? (write in)

Minutes each time

 

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

(1) 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 hélp with
housework? (write in)

Minutes each time

 

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

(so 10 NEXTPAGE)

109

NINR/NCI HAVE II PATIENT wlo CAREGIVER TELEPmME ID __ _ _IINT

—————_

11) COIKING AM) PREPARITB MEALS
Ila. Hith regard to cooking and preparing meals. would you say that you (check one)

ARE MEPEMINT - (do not need help of another person in any part of this activity)
(60 to Next section) (I) ‘

 

NEED SIPERVISIGI (MY - (require another person present during activity to watch
the patient in case of problems - do not regularly assist) (Go 1.0 mm (2)

NEED SUE PHYSICAL HELP - (require physical help and the presence of another daring
all or part of this activity) CARE RECIPIENT PARTICIPATES (Go to 111)) (3)

NEED TOTAL PHYSICAL HELP - (need another person to _carry out this activity)
CARE RECIPIENT DOES NOT PARTICIPATE (Go to 11b) (4)

 

OTI'ERS HAVE ALWAYS WE THIS (GO to 110) (5)
NOT APPLICABLE - (have tube feedings. IV's (NLY) (Go to Next section) (6)

__ NAIREFUSED (9)
11b. 15 the reason for this help related to your (check one)
Cancer or cancer treatment (60 to 11c) (1)
Other health problem(s) (Go to 11c) (2)
NA/Refused (9)

 

11C. If someone helps you with cooking and preparing meals (check all that apply)

__ primary caregiver (I) (Go to 11d) __ umaid family (5) (Go to 112)

_ paid family (2) (Go to 11f) _ urpaid friends/others (6) (GO to He)
paid friends/others (3) (Go to 11f) _ uipaid professional (7) (Go to 118)
paid professional (4) (Go to 11f) _._ NAIRefused (9)

11d. If the primary caregiver helps with cooking and preparing meals

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

Times per week

 

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

Minutes each time

 

110

NINR/NCI HAVE II PATIENT w/o CAREGIVER TELEPHONE ID _ /INT

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

118. 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 Impaid others help with
cooking and preparing meals? (write in)

Minutes each time

 

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

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

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

Times per week

 

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

Minutes each time

 

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

(GO TO NEXT SECTION)

 

 

 

111

ADLs

112

MINR/MCI HAVE II PATIENT H/O CAREGIVER TELEPHONE 10 [INT

The next set of questions asks about your ability to perform activities. I will state an
activity and then read the definition before I ask you questions regarding the activity.

(Interviewer: Category definitions are meant for purposes of clarification.)

l) DRESSING: This Category includes the entire process of dressing or being clothed.
including change 1m bed clothing into the set of Clothing worn during.the day.
and change In bed Clothing at night. This category DOES NOT include management
of clothing during toileting. WW
ZNEYERJBESSJ' Select the category that best describes your level of functioning
for DRESSING.

113

 

NINRINCI HAVE II PATIENT w/o CAREGIVER Tammi: ID _ _ _IINT .

—~—¢_-—_—

la. Hith regard to dressing. would you say you (check one)

_ ARE INJEPEIIENT - (do not need help of another person in any part of this activity)
(60 to question 2) (l)

_ NEED SUPERVISIw (NILY - (requires another person present during activity to watch
the patient in case of problems - do not regularly assist) (Go to 1b) (2)

__ NEED SUE PHYSICAL HELP - (require physical help and the presence of another during
all or part of this activity) CARE RECIPIENT PARTICIPATES (GO to 1b) (3)

_ NEED TOTAL PHYSICAL HELP - (need another person to carry out this activity)
CARE RECIPIENT DOES NOT PARTICIPATE (Go to 1b) (4)

_AREMEVERORESSED (GotOZ) (5)
_NA/RErusm (9)

 

1b. Is the reason for this help related to your (check one)

_ Cancer or cancer treatment (60 to 1C) (1)
__ Other health problem(s) (Go to 1c) (2)
_ NA/Refused (9)

1c. If someone helps you with dressing. who helps (check all that apply)

primary caregiver (1) (Go to 1d) _. unpaid family (5) (GO to 1e)

paid fuily (2) (Go to If) _ unpaid friends/others (6) (Go to 1e)
paid friends/others (3) (Go to If) _ unpaid professional (7) (Go to lo)
paid professional (4) (Go to If) _ NA/Refused (9)

1d. If the primary caregiver helps with dressing

(1) In the" past week. how many times did helshe help with dressing?
(write in)

Times per week

 

(2) Approximately how long‘in minutes each time did helshe help with
dressing? (write in)

Minutes each time

 

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

 

 

114

NINR/NCI HAVE II PATIENT V/O CAREGIVER TEI£PNONE I0 _ _ _ _IINT

18. If other unpaid helpers (family. friends. or professionals) help with dressing

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

Times per week

 

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

Minutes each .time

 

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

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

 

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

 

Times per week

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

Minutes each time

 

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

2) EATIlG: This category includes all types of food and liquid taken by mouth. This includes
all types of presentation used - tray. finger foods. etc.: you'do' not need to use
utensils. This does not include selection or preparation of food.

28. Hith regard to eating. would you- say you (check one)

_ ARE INDEPEMENT - (do not need help of another person in any part of this activity)
(60 to question 3) (1) ‘

_ NEED SUPERVISION (NiLY - (requires another personpresent during activity to watch
the patient in case of problems - do not regularly assist) (Go to 2b) (2)

_ NEED SGiE PHYSICAL TELP - (require physical help and the presence of another during
all or part of this activity) CARE RECIPIENT PARTICIPATES (Go to 2b) (3)

_ NEED TOTAL PHYSICAL HELP — (need another person to carry out this activity)
CARE RECIPIENT DOES NOT PARTICIPATE (Go to 2b) (4)

__ NOT APPLICABLE (need tube feedings. IV's ONLY) (Go to 3) (5)

_ NAIREPUSED (9)

 

115

NINR/NCI HAVE II PATIENT V/O CAREGIVER Two: 10 _ __ _ IINT

2b. Is the reason for this help related to your (check. one)

_ Cancer or cancer treatment (60 to 2C) (1)
_ Other health problem(s) (Go to 2c) (2)
_ NA/Refused (9)

 

2c. If someone helps you with eating. who helps (check all that apply)

_ primary caregiver (1) (Go to 2d) _ unpaid family (5) » (Go to 2e)

_ paid family (2) (Go to 2f) _ unpaid friends/others (6) (Go to 28)
_ paid friends/others (3) (Go to 2f) _ unpaid professional (7) (Go to 2e)
_ paid professional (4) (Go to 21') _ NA/Refused (9)

2d. If the primary caregiver helps with eating

(1) In the past week. how many times did he/shehelp with eating?
(write in)

 

Times per week

 

(2) Approximately how long in minutes each time did helshe help with
eating? (write in)

Minutes each time

 

(Interviewer: If patient doesn't know. then ask them to estimate as best they can.)
2e. If other unpaid helpers (family. friends. or prOfessionals) help with eating

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

Times per week

(2) Approximately how long in mimtes each time did these unpaid others help with
eating? (write in) '

Minutes each time

 

(Interviewer: If patient doesn't know. then ask them to estimate as best they can.)
2f. If other paid helpers (family. friends. or professionals) help with eating

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

Times per week

 

 

116

'NI'NR/NCI' HAVE II PATIENT w/o CAREGIVER TELEI-ioNE ID IINT

————h—

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

Minutes each time

 

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

3) BATHING: This category includes all activities of bathing. whether tub or shower or bed

3a.

3b.

3C.

bath. such as entry into tub or shower. wetting. soaping. rinsing. exiting.
drying born. This does not include washing of head. drying hair. nor dressing
or undressing. Select the response that best describes your level of functioning
for bathing.

Hith regard to bathing. would you say that you . .. (check one)

ARE INJEPENDENT - (do not need help of another person in any part of this activity)
(60 to question 4) (I)

NEED SUPERVISION ONLY - (require another person present during activity to watch
the patient in case of problems - do not regularly assist) (Go to 3b) (2)

NEED SGE PHYSICAL HELP - (require physical help and the presence of another during
all or part of this activity) CARE RECIPIENT PARTICIPATES (Go to 3b) (3)

NEED TOTAL PHYSICAL HELP - (need another person to carry out this activity)
CARE RECIPIENT DOES NOT PARTICIPATE (Go to 3b) (4)

NAIREFUSED (9)

Is the reason forthis help related to your (check one)

Cancer or cancer treatment (Go to 3c) (1)
_ Other health problem(s) (Soto 3C) (2)
_ Nit/Refused (9)

If someone helps you with bathing. who helps (check all that apply)

primary caregiver (1) (Go to 3d) _ unpaid family (5) (Go to 3e)

paid family (2) (Go to 3f) __ (maid friends/others (6) (GO to 3e)
paid friends/others (3) (GO to 30 _ urpaid professional (7) (Go to 3e)
paid professional (4) (Go to 3f) _ NA/Refused (9)

(GO TO NEXT PAGE)

117

NINR/NCI HAVE II PATIENT lilo CAREGIVER TELEPYONE 10

3d. If the primary caregiver helps with bathing . . .

(1) In the past week. how many times did helshe help with bathing? (write in)

 

Times per week

(2) Approximately how long in minutes each time did helshe help with bathing?
(write in)

Minutes ea'ch time

 

(Interviewer: If patient doesn't know. then ask them to estimate as best they can.)
38. If Other unpaid helpers (family. friends. or professionals) help with bathing
(I) In the past week. how many times did these urpaid others help with bathing?

(write in)
Times per week

 

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

Minutes each time

 

(Interviewer: If patient doesn't know. then ask them to estimate as best they can.)
3f. If other paid helpers (family. friends. or professionals) help with bathing

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

Times per week

 

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

_ Minutes each time
(Interviewer: If caregiver doesn't know. then ask them to estimate as best they can.)

4) HALKIM? INSIDE THE RAISE: This category includes all upright movement on foot over the
floor inside the house. NJST NYE AT LEAST FIVE FEET. May use
cane. walker. crutches. or handrail. Select the response that
best describes your level of functioning for walking inside the
house.

118

NINR/NCI HAVE II PATIENT lilo CARECIVER Tammi; ID _ IINT

48. With regard to walking inside the house. would you say that you (check one)

ARE IlDEPEMENT - (do not need help of another person in any part of this activity)
(Gorto question 5) (I)

NEED SUPERVISION (NLY - (require another person present during activity to watch
the patient in case of problems - do not regularly assist) (Go to 4b) (2)

NEED SUE PHYSICAL )ELP - (remire physical help and the presence of another (hiring
all or part Of this activity) CARE RECIPIENT PARTICIPATES (Go to 4b) (3)

NEED TOTAL PHYSICAL lELP - (need another person to carry out this activity)
CARE RECIPIENT (HES MIT PARTICIPATE (Goto 4b) (4)

ARE UNABLE TO HAU< - (will hot bear weight) (60 to 5) (5)
NA/REFUSEO (9)
4b. Is the reason for this help [related to your (check one)

_ Cancer or cancer treatment (60 to 4c) (1)
Other health problem(s) (Go to 4c) (2)

__ NA/Refused (9)

4c. If someone helps you with walking inside the house. who helps . .
(check all that apply)

primary caregiver (1) (Go to 4d) _ unpaid family (5) (Go to 4e)

paid family (2) (Go to 41') . ' __ unpaid friends/others (6) (Go to 48)
paid friends/others (3) (Go to 4f) _ unpaid professional (7) (Go to 4e)
paid professional (4) (Go to 4f) _ NA/Refused (9) .

4d. If the primary caregiver helps with walking inside the house

(1) In the past week. how many times did helshe help with walking inside the house?
(write in)

Times per week

 

(2) Approximately how long in minutes each time did helshe help withwalking inside
the house? (write in)

Minutes each time

 

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

 

 

 

119

"NINR/NCI HAVE I I PATIENT w/o CAREGIVER TELEPimNE ID IINT

 

4e. If other unpaid helpers (family. friends. or professionals) help with walking inside
the house.

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

_ Times per week

(2) Approximately how long in minutes-each time did these unpaid others help with
walking inside the house? (write in)

Minutes each time

 

(Interviewer: If patient doesn‘t know. then aSk them to estimate as best they can.)

4f. If other paid helpers (family. friends. or professionals) help with walking inside
the house.

 

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

Times per week

 

(2) Approximately how long in minutes each time did these paid others help with
walking inside the house? (write in)

__ Minutes each time

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

(GO TO NEXT PAGE)

 

120

NINR/NCI HAVE II PATIENT w/o CAREGIVER TELEPHONE vm _ [INT

5) TOILETING: This category includes: getting to and from the toilet (or use of toiletin'q
equipment such as bedpan). removal and adjustment of clothing. positioning on toilet. cleaning
of body parts. and replacement of clothing. This does not include assistance because of
incontinence of bowel or bladder. Select the response that best describes your level of
functioning for toileting.

5a. Hith regard to toileting. would you say that you (check one)

ARE IIDEPEMINT - (do not need help of another person in any part of this activity)
(60 to question 6) (_I)

NEED SUPERVISIUI ONLY - (require another person present during activity to watch
the patient in case of problems - do notregilarly assist). (Go to 5b) (2)

__ NEED SUIE PHYSICAL iELP - (require physical help and the presence of another during
all or part of this activity) CARE RECIPIENT PARTICIPATES (Go to Sb) (3)

NEED TOTAL PHYSICAL HELP - (need another person to carry out this activity)
CARE RECIPIENT DOES NOT PARTICIPATE (Go to 5b) (4)

NOT APPLICABLE - (has catheter. colostomy) (Go to 6) (5)

NA/REFUSED (9)

5b. Is the reason for this help related to your (check one)

_ Cancer or cancer treatment (Go to Sc) (1)

__ Other health problem(s) (Go to Sc) (2)
__ NAlRefused (9)

5c. If someone helps you with toileting. who helps (check all that apply)
primary caregiver (1) (Go to 5d) Impaid family (5) (Go to Sc)
paid family (2) (Go to Sf) upaid friends/others (6) (Go to Sc)

: paid friends/others (3) (Go to 5f) : umaid professional (7) (Go to Be)
__ paid professional (4) (Go to 5f) __ NA/Refused (9)
5d. If the primary caregiver helps with toileting

(1) In the past week. how many times did helshe help with toileting?
(write in)

Times per week

 

 

121

NINR/NCI HAVE II PATIENT w/O CAREGIVER Tamar: ID __ _ _ __IINT

(2) Approximately how long in minutes each time did helshe help with
toileting? (write in) ~

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

5e. If other unpaid helpers (family. friends. or professionals) help with toileting

 

(1) In thepast week. how many times did these unpaid others help with
toileting? (write in)

Times per week

 

(2) Approximatelyhow long in minutes each time did these unpaid-others help with
toileting? (write in) ‘

 

Minutes each time

 

(Interviewer: If patient doesn't know. then ask them to estimate as best they can.)
5f. If other paid helpers (family. friends. or professionals) help with toileting

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

Times per week

 

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

 

Minutes each time

 

(Interviewer: If patient doesn't know then ask them to estimate as best they can.)
6) TRANSFERRING IN All) our OF BED: This category includes movement to and from bed. tochair

or wheelchair. Dévices.'bars. and other mechanical aids may be used. Select the response that
best describes your level of independence.

(GO TO )EXT PAGE)

 

122

NINR/NCI HAVE II PATIENT N/o CARECIVER TELEPHONE ID /INT

68. Nith regard to transferring in and out of bed. would you say that you (check one)

ARE ImEPEmENT — (do not need help of another person in any part of this activity)
(60 to question 7) (I)

NEED SIPERVISIU) UlLY - (require another person present during activity, to watch
the patient in case of problems - do not regularly assist) (Go to 6b) (2)

 

NEED soc PHYSICAL HELP - (require physical help and the presence of another during
all or part of this activity) CARE RECIPIENT PARTICIPATES (Go to 6b) (3) -

NEED TOTAL PHYSICAL HELP - (need another person to carry out this activity)
CARE RECIPIENT DOES MT PARTICIPATE (GO _to 6b) (4).

REMAIN BEDFAST (Go to 7) (5)

 

TIA/REFUSED (9)
6b. Is the reason for this help related to your (check one)

_ Cancer or cancer treatment (60 to 6C) (1)
_ Other health problem(s) (Go to 6c) (2)
_ NA/Refused (9)

6c. If someone helps you with transferring in and out of bed. who helps
(check all that apply)

primary caregiver (1) (Go to 6d) unpaid family (5) (Go to 6e)

__ paid fanily (2) (Go to 6f) ' unpaid friends/others (6.) (Go to 6e)
__‘ paid friends/others (3) (Go to-6f) unpaid professional (7) (Go to 6e)
paid professional (4) (Go to 6f) NA/Refused (9)

 

6d. If the primary caregiver helps with transferring in and out of bed

(I) In the past week. how many times did helshe help with transferring in.and out
of bed? (write in)

Times per week

(2) ApproximateTy how long in minutes each time did helshe help with transferring
in and out of bed? (write in)

Minutes each time

 

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

APPENDIX B

Consent Form

 

123

(patient) HSU FAMILY CARE STUDY

CONSENT PORN

The study in which we are asking you to participate is designed to learn more about the
ways in which caring for an elderly family member affects the person providing the care.

Over the next 24 months. 1,235 caregivers will be interviewed five (5) times by a member
nurse in the hospital from which you were discharged. Your participation is requested
to have access to your medical record discharge summary and group health insurance

numbers .

If you are willing to participate in this study please read and sign the following
statement.

I.

I have freely consented .to take part in a study of family caregivers conducted by
the College of Nursing and the Department of Family Practice. College of III-Ian

Medicine. at Michigan State University.

The study has been described and explained to me and I understand what my

participation will involve.

I understand my participation in this study is voluntary. will involve no cost to
me. and that my decision will in no way affect my current or future health care.

I understand that I may withdraw from participation at any time without penalty to
me by calling 1-800-654-8219.

I understand that the results of this study will be treated in strict confidence
and. should they be published, my name will remain anonymous. I understand that
within these-restrictions, results can. upon request, be made available to me.

I understand that no immediate benefits will result from my taking part in this
study, but am aware that my responses may add to the understanding of health care
professionals and may influence future family care. ’

I understand that I have the right to seek further information about this study,
and my rights relating to it. by calling the research office: (517) 353-0306 or
toll free, 1-800—654-8219.-

I understand that a member of the research staff may need to review part of my
current medical record. I consent to allow access to the hospital discharge
planningtficinents and understand that this information will remain stri cty
COO en I

I understand that a mailer of the research staff may wish to inquire about my group
health insurance policy benefits to understand what benefits are available to me
and comare thes'e to what I am presently using. I give my consent for the hospital

discharge coordinator to providemy mygroup insurance(s) policy nlnbers with the-

understanding that they will remain strictly confidential
. state that I understand what is required of me as a

I,
participant and agree to take part in this study.

Patient Signature Date

OR . _
Guardian/Family Medier Hitness. . _ -..,

 

APPENDIX C

UCRIHS Approval

124

MICHIGAN STATE

 

UNIV

ERSITY

May 12. 1991

10: Barbara A. Given
A230 Life Sciences

23: 133.: 92-280
TITLE°

. 9mg?! now: CARE FOR cancer-4 comm-men

REVISE! W: KIA
QMY: l-C, 2-II
um DA“: 05/08/97

The university committee on Research Involving human 3“bi:§“"2c§§§3’

review of

rotected
gherefore.
above

MG!” 8

 

Si MES-2m
“X: Slim-"7|

away-sum
0cm”
manna!

ales-W
flmw

If we can be c
at (517)355-2100 or sax (517i4

thistproject is complete. I am p eased to adv tha

wel are of

and methods to obtain informed consent are approprial
any rev sions

q

the human subjects appear to be

 

 

l?
t .
the UCRIIS approved this project and listed.

UCRIHS a roval is valid for one calendar year. beginning with
the apprgSal date.shown above. Investigators planning to
continue a project be nd one year must use the green renewal
form (enclosed with t e original a roval letter or when a
pro ect is renewed) to seek t certification. There is a
mum of four such expedit renewals sible. Investigators
wish to continue a project beyond the time need to sub-it it
again or complete rev ew.

ocnrns must review any changes in rocedures involving human.
subjects. rior to in tiation of tge . If this is done at
the time o renewal. please use the renewal form. To
revise an a roved protocol at an 0 her time during year
send your wr tten request to the as Chair. requesting revised
approval and referencin the project's IRE I and title. Include
in your request a descr ption of the change and any revised

ins ruments. consent forms or advertisements that are applicable.

Should either of the fall arise during the course of the
work. investigators must noti UCRIHS promptly: 1i roblems
(unexpected side effects comp aints, e c.) involv gunan
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 approved.

f any future helpi leise do not hesitate to contact us

 

 

 

 

mass-2m

14255

MICHIQANSTATE
UNIVERSITY

oceans: 2a. 1991

 

1‘0: Barbara A. G ven
1030 Life So ences

' . 91-sso
'3' ¥§¥£ég razozcroos or were: can roucrxouruc In uncanny
s’a ILL castes partners
nsvrsxou snuussrro.
cartoonn so,
are unavan oars: so ao/sv

University Oounittee ects ' (acorns)

'rhe onlesearch Involving sub“;
review of this {project is‘”1 comlete. I am pleased to beadv
andwe fthe ects

trotegted“ and lnethodsto coneuenttgrea“ .qg‘rif'yfu
r:fore. them approved thisp ectand any ropifipone neted

am ms revali valid foronecalandar ea with
3 pprgsal date‘shown above. Investigatgrs rplbcg t3

theta
:2ch ml“: cant use the een renewal
form :tetctoeedjaft th original“ lt:gpcrgvral lattes-9:: whens

ro ect isrenewed) tification. there isa
3.33.“: flmwale mpossible. Investigators

of
wishing to continue a vprojeotbeycnd time need to submiti
again or couplets rev e .

OCRIBSmus recedures involving lumen
subjects. ogrim:- to "initiations-n of to change. If this is done at
renewal. lease use reen renewal form. .

revise an approved protocol at each. o er time duringthe

send your lItfivgatten st to the cents Chair, requesting revised
approval the project s 113 ii andt itlo. Include
request a descr ption of theechang and any revised

ins meets. consent forms or advertisements that are applicable.

REVISIONS 3

9mm] .
tuners: Should either of the toll arise during the course

of
work. inves ti Itors must not gums (1) ans

(unexpected angle effects comp ts, ego .giin lvin 92m“

subjects or fluchanges sin the research environment orn

information ca ting greater risk to the human sub ects e“than
existed when the protocol was previously reviewed an approved.

 

It can be of any future help please do not hesitate to contact us
at Sl7IJSS-2100 or sax (517)a i 171.

Sincerely.

Vid 3. i ht. 911.0
ms Chrirg

Embed

 

 

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