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7180344

This is to certify that the
thesis entitled
Factors Associated with the
Correspondence of Cancer Patient

and Caregiver Reported Symptoms

presented by

Rachelle Kathryn Williams

has been accepted towards fulfillment
of the requirements for

M. S . degree in Epidemiology

/%.D&Wflm/

Major professor

Dflzfiz /4’7X

0-7639 MS U is an Affirmative Action/Equal Opportunity Institution

 

 

LIBRARY l

Michigan State
University

 

 

 

PLACE IN RETURN Box
to remove this checkout from your record.
TO AVOID FINE return on or before date due.

 

DATE DUE MTE DUE DATE DUE

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

1M clam-9651).“

FACTORS ASSOCIATED WITH THE CORRESPONDENCE OF CANCER PATIENT
AND CAREGIVER REPORTED SYMPTOMS

By

Rachelle Kathryn Williams

A THESIS

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

MASTER OF SCIENCE

Department of Epidemiology

1998

ABSTRACT

FACTORS ASSOCIATED WITH THE CORRESPONDENCE OF CANCER PATIENT
AND CAREGIVER REPORTED SYMPTOMS

By

Rachelle K. Williams

As more and more elderly cancer patients receive ambulatory care and remain at
home, caregiving becomes an important issue presently and in the future. In order to
investigate an aspect the the patient/caregiver relationship, concordance between the
cancer patient and their family or friend caregiver on the presence or absence of fifteen
common symptoms will be assessed. This concordance will then be used to determine if
various caregiver or dyadic characteristics significantly predict the odds of disagreement
by using multiple logistic regression techniques. The characteristics to be assessed
include caregiver age, gender, living arrangements and marital status to the patient. In the
univariate logistic regression, five symptoms showed at least one variable to be a
significant predictor of disagreement. For poor appetite, nausea, trouble sleeping, dry
mouth and coordination problems, caregivers 65 years and older were less likely to
disagree with the patient. Additionally, for trouble sleeping, dry mouth and coordination
problems, caregiver-patient dyads not married to and living apart from each other were
found to more likely to disagree than those dyads married to and living with each other.
Similar results were seen with the multiple logistic regression and will be discussed

further in the paper as well as the implications for future research.

Cepyright by
RACHELLE KATHRYN WILLIAMS
1998

ACKNOWLEDGMENTS

I would like to acknowledge my committee members, Dr. Barbara Given, Dr. Charles
Given, and Dr. Dorothy Pathak, for their continuous help and support throughout the
process. I would also like to acknowledge the students and staff who have assisted me in
various ways with my thesis. Finally, this thesis would not have been possible without

the recruiters and interviewers to gather the data. I would like to sincerely thank them.

iv

TABLE OF CONTENTS

LIST OF TABLES ......................................................................................................... vi
LIST OF FIGURES ........................................................................................................ viii
BACKGROUND INFORMATION AND THEORETICAL FRAMEWORK .............. 1
METHODS .................................................................................................................... 9
Family Home Care for Cancer Study / Sample ......................................................... 9
Research Questions / Data Analysis ......................................................................... 10
Concordance ........................................................................................................ 10
Association between disagreement and caregiver characteristics ...................... 11
RESULTS ...................................................................................................................... 14
Research Question [A - Concordance ...................................................................... 15
Research Question 1 B - Sensitivity and Specificity Analysis .................................... 18
Research Question 2 - Multiple Logistic Regression ................................................ 22
Univariate Analysis .............................................................................................. 22
Multivariate Analysis ........................................................................................... 24
DISCUSSION ................................................................................................................ 27
APPENDICES ............................................................................................................... 36
ENDNOTES .................................................................................................................. 77
BIBLIOGRAPHY .......................................................................................................... 8O

LIST OF TABLES

Table 1 - Variables used for logistic regression ................................................. 36
Table 2 - Frequency of selected caregiver/dyad characteristics among

sample ................................................................................................. 37
Table 3 - Summary statistics of frequency of symptom presence and

concordance for entire sample ............................................................ 38
Table 4 - Overall patient/caregiver concordance ............................................... 39
Table 5 - Entire sample: patient/caregiver concordance .................................... 40
Table 6 - Male caregivers: patient/caregiver concordance ................................ 41
Table 7 - Female caregivers: patient/caregiver concordance ............................. 42
Table 8 - Caregivers less than 50 years: patient/caregiver concordance ............ 43
Table 9 - Caregivers 50-64 years old: patient/caregiver concordance ............... 44
Table 10 - Caregivers 65 years and older: patient/caregiver concordance .......... 45
Table 11 - Caregivers not married to and live apart from patients:

patient/caregiver concordance ............................................................ 46
Table 12 - Caregivers not married to and live with patients:

patient/caregiver concordance ............................................................ 47
Table 13 - Caregivers married to and live with patients: patient/

caregiver concordance ........................................................................ 48
Table 14 - Caregivers live with patients: patient/caregiver concordance ............ 49
Table 15 - Caregivers live apart from patients: patient/caregiver

concordance ........................................................................................ 50
Table 16 - Caregivers married to patients: patient/caregiver concordance .......... 51
Table 17 - Caregivers not married to patients: patient/caregiver

concordance ........................................................................................ 52
Table 18 - Sensitivity and specificity of the caregiver to the patient

ranked by sensitivity ........................................................................... 53
Table 19 - Sensitivity and specificity of the caregiver to the patient by

caregiver gender, ranked by sensitivity ......................................... 54
Table 20 - Sensitivity and specificity of the caregiver to the patient by

caregiver age, ranked by sensitivity .................................................... 55

Table 21 - Sensitivity and specificity of the caregiver to the patient by

relationship/living arrangements, ranked by sensitivity ..................... 57

vi

Table 22 -

Table 23 -

Table 24 -

Table 25 -

Table 26 -

Table 27 -

Table 28 -
Table 29 -
Table 30 —
Table 31 -
Table 32 -
Table 33 -
Table 34 -
Table 35 -
Table 36 -
Table 37 -
Table 38 -
Table 39 -
Table 40 -
Table 41 -
Table 42 -

Sensitivity and specificity of the caregiver to the patient by

caregiver residence, ranked by sensitivity .......................................... 59
Sensitivity and specificity of the caregiver to the patient by

caregiver relationship, ranked by sensitivity ....................................... 6O
Univariate logistic regression to determine odds of disagreement

for pain, fatigue and trouble sleeping ................................................. 61
Univariate logistic regression to determine odds of disagreement

for GI symptoms ................................................................................. 62
Univariate logistic regression to determine odds of disagreement

for respiratory symptoms .................................................................... 64
Univariate logistic regression to determine odds of disagreement

for miscellaneous symptoms ............................................................... 65
Odds of disagreement for pain ............................................................ 66
Odds of disagreement for fatigue ........................................................ 67
Odds of disagreement for trouble sleeping ......................................... 68
Odds of disagreement for poor appetite .............................................. 69
Odds of disagreement for diarrhea ...................................................... 7O
Odds of disagreement for constipation ............................................... 71
Odds of disagreement for nausea ........................................................ 72
Odds of disagreement for vomiting .................................................... 73
Odds of disagreement for weight loss ................................................. 74
Odds of disagreement for dry mouth .................................................. 75
Odds of disagreement for cough ......................................................... 76
Odds of disagreement for difficulty breathing .................................... 77
Odds of disagreement for coordination problems ............................... 78
Odds of disagreement for frequent urination ...................................... 79
Odds of disagreement for fever .......................................................... 8O

vii

LIST OF FIGURES

Figure l - Comparison of relationship status and current living
arrangements among 356 dyads ........................................................... 81

viii

BACKGROUND INFORMATION AND THEORETICAL FRAMEWORK

Cancer has consistently been called a disease of aging as more than half of all
cancers are diagnosed in people age 65 and older.1 Therefore, cancer in the elderly
population is a very important topic to be researched. In these patients, a significant
number of symptoms have been documented and it is assumed that patients with cancer
will inevitably suffer from certain symptoms some time throughout their illness. For
example, it has been reported that approximately 70% of patients with cancer experience
significant pain some time during the course of their illness.2 Many other symptoms have
also been reported, including, but not limited to, nausea, poor appetite, insomnia, fatigue,
cough, constipation, and diarrhea. Because caregivers are responsible for and interact
closely with the patient, they greatly influence the patients’ quality of life. Physicians and
nurses become informed of patients’ symptom distress directly through the patient and
caregiver. Therefore, good communication between the caregiver, patient, and the
healthcare providers becomes very important in managing symptom distress.
Discrepancies between patient and caregiver views on symptomology may reflect
misunderstanding or miscommunication, thus leading to inadequate symptom control,
dissatisfaction with the caregiver role, and inadequate well-being for both.3 Therefore,
looking at concordance of cancer patient and caregiver reports of symptom distress
becomes a very important issue. Unfortunately, to date, there has been relatively little
literature published discussing the issue of agreement between cancer patient and patient

caregiver about the presence of various symptoms.

2
As increasing numbers of elderly and ailing persons choose to remain at home,

caregiving for these persons becomes a very important issue. Caregiving in this study is
defined as assistance of any kind given to the patient. Caregiving tasks include the
amount and type of care provided by the caregiver. The tasks are typically defined as
activities of daily living (ADL’s) (i.e., eating, bathing, dressing, toileting, etc.) and
instrumental activities of daily living (IADL’s) (i.e., transportation, laundry, shopping,
etc.). Additional tasks include emotional support, symptom management, and service
utilization. Caregivers may assist because of chronic conditions, such as cancer or
Alzheimer’s disease, or simply because of increased age and diminishing ability to
perform certain tasks. In the present study, increased age combined with the presence of
cancer has introduced the need for caregivers.

Much of the research that has been conducted to date in the area of caregiving has
generally emphasized the importance of family and friends for patient care and the
challenges involved.4’5’6’7’8 However, a large portion of this research has had a tendency
to investigate caregivers as a homogenous group which may result in hiding differences
between groups of caregivers (i.e., age of the caregiver, gender of the caregiver,
relationship of the caregiver to the patient).9 More recent literature has focused on gender

' ' - - 41 1
and it’s impact on the caregivmg rolel’2’3’ ' 0' 1

as well as caregiver-patient relationship
(i.e., spouse versus non-spouse)."3’5’l2 Several important findings have stemmed from the
literature focusing on caregiver gender and it’s effect on the caregiving role. The first

finding is that the majority of caregivers to elderly persons are women and are likely to

provide the bulk of the care.13 ’14’15’16 A second finding is that the type of care provided to

3
the recipient is often gender-based.l7 The gender-role socialization hypothesis argues that

women are more vulnerable to effects of stress because of earlier socialization factors
such as sensitivity to relationships, nurturing versus instrumental behaviors, illness
behaviors, and coping styles and suggests that there are traditionally differences seen
between the genders in various household tasks.lo Consistent with this suggestion, Curtis
and Femsler (1989) found that male caregivers tended to help with household
maintenance and repair and driving, while female caregivers were more likely to help
with cooking, shopping and laundry.3 Corroborating literature includes that by Horowitz
(1985)”, Stone and Short (1990)”, Chang and White-Means (1991)”, and Miller and
Cafasso (1992)”). The third finding is that female caregivers consistently experience
more burden or stress than male caregiverslz’l3

Issues that haven’t been researched as thoroughly and will be included for analysis
in this paper are caregiver living arrangements (i.e., coresidence) and caregiver age.
Coresidence has been touched upon briefly in papers by Chappell (1991) and Tennstedt
et.al. (1993).20’21 Chappell, in particular, investigated three separate dyadic combinations
and their effect on caregiving in terms of IADL and emotional support. The groups
examined included caregivers married to and living with the patient, caregivers not
married to but living with the patient, and patients receiving care but living alone. The
key finding in this research is that living with someone as opposed to marital status was
more important for assistance with IADL.

One apparent limitation of previous caregiving research is the failure to examine

various characteristics of the caregiver such as caregiver age, marital status, proximity to

4
the care recipient, and employment status that would seem to influence care.l Caregiver

age, although not appearing in the literature frequently, should be considered when
investigating the caregiver role for many reasons. Since all patients in this study are 65
years and older, caregivers in the same age group may build more of a rapport with the
patient as they may have more in common. Age may also be indicative of employment
status. Caregivers 65 years and older are more likely to be retired than younger
caregivers, and therefore, may have more time to spend with the patient. Fitting and
colleagues found that younger caregivers (<68 years) were less satisfied and more
resentful of the caregiving role than were older (268 years) caregivers.22 It was also noted
than male caregivers were typically older than female caregivers.” These findings could
reflect differences between older and younger caregivers, or between male and female
caregivers. Kurtz et.al., examined caregiver age in relation to concordance of cancer
patient and caregiver reports of symptoms. Their findings suggest that age of the
caregiver may not play an important role when looking at concordance. Although
patterns in caregiver age were observed when looking at individual symptoms, there was
no consistent pattern seen across symptoms.8 The present research will investigate
caregiver age in the same manner.

As previously mentioned, the issue of concordance between patient and caregiver
on symptom presence or absence has not been investigated to a large extent. One study in
particular addressing this topic is by Kurtz et al. The researchers investigated whether
patient caregiver reports of the cancer patients’ symptoms were in agreement with reports

by patients. They went further and looked at whether other variables, including patient

5
depression, caregiver depression, caregiver optimism, and perceived impact of caring on

caregiver health, would explain discrepancies in the patients’ and caregivers’ reports.
They found the overall agreement for all symptoms between patient and caregiver to be
71% and independent of the number of symptoms reported by the patient.11 Further, they
observed the rate of agreement to be highest for fatigue and lowest for insomnia. Female
caregivers were found to have a higher percent agreement and level of association with
their patients than male caregivers.

Several articles have been published specifically on the issue of pain. This is
likely due to the fact that pain occurs in approximately one-third of patients receiving
therapy for cancer and more than two-thirds with advanced disease.“25 Grossman et al.,
performed a study looking at the communication about cancer pain intensity between
patients and their caregivers.l The caregiver in this study refers to the patients’ health
care provider. Pain was assessed using the Visual Analogue Scale (VAS) which was
given to both the patient and the caregiver. In general, the results of this study indicated
that caregiver perceptions of patient pain are ofien dissimilar from those of the patient.
The researchers found these differences to be most noticeable in patients with significant
pain. A slightly different conclusion was reached by Hodgkins and colleagues in their
study comparing patients’ and their physicians’ assessment of pain.26 The VAS was used
to estimate pain. A correlation analysis revealed that prior to an invasive procedure,
patients could predict the pain they would experience more accurate than their physician.
The physicians better estimated this pain after the procedure had taken place. The authors

concluded that patients may be better at predicting level of pain than their physicians,

6
however, the physicians’ estimates “appear to be accurate enough to allow them to give

useful information about the degree of discomfort that a patient will experience during an
invasive procedure.”

The purpose of this study is to investigate whether cancer patient reports of
selected symptoms are in agreement with the cancer patient’s caregiver reports of the
same symptoms and whether certain factors, including caregiver age, caregiver gender,
caregiver relationship to patient, and caregiver residence are associated with this
agreement. The symptoms that will be investigated are nausea, pain, poor appetite,
weight loss, trouble sleeping, fatigue, fever, difficulty breathing, cough, dry mouth,
constipation, diarrhea, frequent urination, coordination problems, and vomiting. The
questions posed by the study will attempt to be answered using existing data previously
collected through The Family Home Care for Cancer -- A Community Based Model”.
The relevant data consists of patient and caregiver reports of absence or presence of 15
symptoms collected at the first interview post-diagnosis. Patients and their caregivers
were asked by trained personnel whether a particular symptom had been present or absent
over the two weeks prior to the interview.

In the present paper, it is hypothesized that given the traditional caregiving role
women have taken in the past, there will be less disagreement between patients with
female caregivers as opposed to patients with male caregivers regarding presence or
absence of symptoms. This hypothesis stems from the fact that women are more likely to
assist in the day-to-day activities as well as take on more responsibility for caregiving

than males. Because of this, female caregivers will likely see or be more informed of

7
symptom distress of the patient more often than males. Further, it is hypothesized that

increased agreement will be observed between patients and caregivers married to each
other versus those not married to each other, between patients and caregivers coresiding
versus those living apart from each other, and between patients with older caregivers as
opposed to younger caregivers. These hypotheses have been derived from literature
which has suggested that spouse caregivers ofien view their role as an accepted part of
marriage and tend to be more committed than non-spouse caregivers. Further, spouse
caregivers provide a greater range of assistance and more time spent on caregiving."3
The hypothesis that coresiding patients and caregivers are more likely to concord with
each other on the presence or absence of symptoms was based on research by Chappell
suggesting that living with the caregiver rather than being married to the caregiver was
more important, in particular, for assistance with IADL.15 It is also presumed that more
accurate and a greater amount of observance would occur with caregivers living with the
patient as these caregivers will “see” more than those living apart from the patient. It was
further hypothesized that older caregivers (as opposed to younger caregivers) would be
more likely to agree with the patient on the presence or absence of symptoms. This was
based on the findings of Fitting et al., of a more resentful attitude of younger caregivers
than older caregivers. A contradiction was noted, however, in the fact that the present
research hypothesized that older (versus younger) and female (versus male) caregivers
would be more likely to agree with the patient. However, as noted by Fitting et al., men
in the caregiving role are usually older than women. The present research and analysis

will attempt to explain the associations.

8
The data to be used to investigate the hypothesized associations have previously

been “cleaned”. The data has been gathered into a SPSS portable file to be converted to

SAS format for analysis.

METHODS

Family Home Care for Cancer Study / Sample

The Family Home Care for Cancer Study is longitudinal and utilizes patients aged
65 and older with a diagnosis of one of four cancers: breast, colo-rectal, lung or prostate
cancer. The study is tracking the impact of the natural course of these diseases and their
treatments upon the patient’s physical firnctioning, symptoms, medical care needs, use of
services and the costs that are imposed upon the patient and their families. Telephone
interviews are performed throughout the course of one year at pre-determined milestones
to collect the information. Both patient and caregiver (if available) are interviewed at
these milestones. In addition to the telephone interviews, self-administered booklets
(SAB’s) are sent out immediately after the interview requesting return within two weeks.
The SAB is sent to both the patient and caregiver and has firrther questions regarding
patient and caregiver health and feelings. The data used in this report is based on
telephone interviews of a convenience sample of 362 patients and their family or friend
caregivers recruited by trained personal at hospitals or cancer centers throughout
Michigan. All patients were 65 years or older. For dyads agreeing to participate,
informed consent was obtained and interviews were conducted one month after surgery
for patients having surgical treatment, or within two weeks of initiation of chemo or

radiation therapy. Patients without caregivers were excluded from this report.

10
Research Questions / Data Analysis

The following research questions will be addressed in this study:
1A. When looking at the presence or absence of symptoms asked of both caregiver and
patient, what is the rate of agreement for the total sample, for male and female caregivers,
for differing age groups of caregivers, for various caregiver-patient relationships, and for
caregiver residence?
1B. What is the sensitivity and specificity of the caregiver’s report of symptoms as it
relates to the cancer patient’s reported symptoms?
2. Are higher or lower rates of agreement for a given symptom associated with caregiver

gender, caregiver age, caregiver relationship to patient, or caregiver residence?

Concordance

To determine the level of concordance between the patient and caregiver (research
question 1A), several statistical methods were employed: percent agreement, kappa,
sensitivity and specificity. For a given symptoms, percent agreement is defined as the
number of dyads who agree on the presence or absence of a symptom over all dyads in
the sample. The kappa statistic is designed to assess the level of agreement beyond that
which may occur by chance. Kappa is determined by the following formula: Kappa =
[(Observed)-(Expected)]/1-Expected. The observed agreement is the number calculated
from percent agreement, above. The expected agreement is determined by the following
formula:

(No. cg state yes)(No. pt state yes) + (No. cg state no)(No. pt state no)
(Total No. Dyads)2

 

ll
Sensitivity refers to the proportion of caregivers who agree with the patient that a

symptom is present, given that symptom is present, while specificity refers to the
proportion of caregivers who agree with the patient that a symptom is absent, given that
symptom is absent. These statistics were computed for each of the following groups:
total sample, caregivers less than 50 years of age, caregivers 50 to 64 years of age,
caregivers 65 years of age and older, dyads who live together, dyads who live apart, dyads
who are manied to each other, dyads who are not married to each other, female
caregivers, and male caregivers. Subsequently, groups were created to describe
combinations of living arrangements and relationship. Thus, the statistics were also
computed for following groups: dyads not married to each other and living apart, dyads
not married to each other and living together, and dyads married to each other and living
together. Only one dyad was described as married to each other and living apart, and will
be included with dyads not married and living apart. Levels of significance for kappa
values were also computed. Additionally, sensitivity and specificity of the caregivers
response to the patients response were determined in order to get a feeling of agreement
when presence of symptoms was reported by the patient versus agreement when absence

of symptoms was reported by the patient (research question 18).

Association between disagreement and caregiver characteristics
For analysis of research question 2, multiple logistic regression will be utilized to
determine whether the odds of disagreement differ for the various levels of a given

caregiver characteristic with and without adjustment for other potentially confounding

12
variables. For each symptom, univariate logistic regression analysis was run for each of

the caregiver characteristics: age group of the caregiver (CAGE), relationship of the
caregiver to the patient (RLTNCAT), gender of the caregiver (CSEX), and residence of
the caregiver (CCURLIV). The variable groups are listed in Table l.

Cross-tabulations were created for these two variable, and it was discovered that
only one dyad fit into the category of spouses living apart. This cross-tabulation is
presented in Figure 1. In an effort to sort these variable out, the two variables, CCURLIV
and RLTNCAT, were combined into three indicator variables, as briefly mentioned
above. The first indicator variable included spouses who lived together, and was termed
S_TOG. The second included non-spouses who lived together, and was termed
NS_TOG. The third variable included non-spouses who lived apart and was termed
NS_APART. A group was not created for spouses who lived apart as there was only one
dyad fitting into this category. It was included in the category NS_APART.

In the univariate logistic regression, analyses were run using the original variables
(CCURLIV and RLTNCAT) first, then again, using NS_TOG, NS_APART, and S_TOG
as predictors of disagreement (reference = S_TOG).

A series of models was then run using multiple logistic regression to assess the
effect of one variable while controlling for one or more other variables. These models
used the indicator variables for relationship and living arrangements as opposed to the
separate variables, CCURLIV and RLTNCAT. Further, the caregiver age variable was
used as an indicator variable, instead of a continuous variable, as caregivers were

separated into three age categories.

13
In the multivariate logistic regression, the following models were run:

disagreement = caregiver age + relationship/living arrangements

disagreement = caregiver age + caregiver gender

disagreement = caregiver gender + relationship/living arrangements

disagreement = caregiver age + caregiver gender + relationship/living
arrangements

 

RESULTS

Descriptive characteristics of the sample are summarized in Table 2. The total
sample size is 362 dyads, although, since there is missing information for some dyads,
this number may be lower for various variables. Of 351 caregivers with available data on
age, 12.8% (n=45) were less than 50 years of age, 23.4% (n=82) were 50-64 years of age, .

and 63.8% (n=224) were 65 years and older. Information was available for the entire

 

sample on gender of the caregiver. 23.5% (n=85) were male and 76.5% (n=277) were
female. Of 356 caregivers with available data on living arrangements, 82.9% (n=265)
live with the patient and 17.1% (n=61) live apart from the patient. Of this same number,
74.4% (n=265) are married to the patient and 25.6% (n=9l) are not married to the patient.
The last two variable were combined to describe the overall caregiver-patient
relationship. Of the 356 caregivers with available information on both marital status and
living arrangements, 74.16% (n=264) are married to and live with the patient, 0.28%
(n=l) are married to and live apart from the patient, 8.71% (n=31) are not married to and
live with the patient, and 16.85% (n=60) are not married to and live apart from the
patient.

The frequency of the fifteen symptoms as reported by the patient and caregiver is
given in Table 3. Fatigue was the most commonly reported symptom by both the patient
and the caregiver (62.4%, 67%, respectively), followed by pain (46.7%, 51%,
respectively). Fever and vomiting were the least frequently reported symptoms by both

the patient and the caregiver (<7 %).

l4

1 5
Research Question [A - Concordance

Rates of agreement between the cancer patient and patient caregiver were
computed two ways: percent agreement and kappa. Each method is briefly described in
the Methods section. Statistics were computed for the entire sample, and for the various
sub-groups of interest. Further, concordance was determined for two variations of the
original data set. First, concordance was computed using only those dyads for which all
patients and all caregivers responded to all the questions. Second, the analyses were run
using all dyads in the data set regardless of whether both the patient and the caregiver or
just one responded to a given question. The results from the two analyses are given in
Tables 5-17. The results obtained from both analyses did not differ, and therefore, all
dyads will be used in subsequent analyses.

The overall agreement for the entire sample and for sub-groups is presented in
Table 4. Statistics are calculated first for those dyads who responded to all fifteen
symptoms, and again for all dyads. When just dyads responding to all symptoms is
analyzed, the overall agreement is 81.24%. When all dyads are used, this agreement
changes slightly to 80.78%. For the remaining sub-groups, the change in agreement is
minimal. It is apparent that caregivers living apart from the patient have a lower
agreement that those living with the patient (76.43%, 81.71%, respectively). Similarly,
non-spousal caregivers have a lower agreement than spousal caregivers (77.75%, 82.03%,
respectively) and agreement increases as caregiver age increases from <50 years to 50-64
years to >64 years (74.37%, 80.23%, 82.27%, respectively). No difference in agreement

is seen, however, between male and female caregivers (80.49%, 80.56%, respectively).

16
For the entire sample (see Table 5), the highest rate of agreement was seen with

fever (95.28%) and vomiting (95.29%), followed by poor appetite (86.74%), diarrhea
(86.46%), coordination problems (86.43%), nausea (85.08%), constipation (83.70%),
difficulty breathing (83.15%) and cough (80.94%). The remaining symptoms had rates of
agreement below 80%, with the lowest percent agreement associated with dry mouth
(64.72%). Kappa statistics ranged from a low 0.23 (dry mouth) to a high .64 (poor F

appetite). All statistics were significant at 0t=0.05. The complete results are shown in

 

Table 5.

For all sub-groups analyzed, the highest percent agreement was consistently seen
with fever (>91%) and vomiting (>91%). In the group of patients with non-spousal
caregivers (see Table 17), high agreement was also seen with difficulty breathing (>91%).
The lowest percent agreement was consistently seen with dry mouth (<69%). However,
for the group of patients with spousal caregivers (see Table 16) and for the group with
caregivers aged 65 and older (see Table 10), percent agreement was lowest for fatigue
(68.40% and 67.26%, respectively).

Caregivers consistently agreed more frequently on fever and vomiting and less
fi'equently for dry mouth and fatigue regardless of age, however middle-aged caregivers
(see Table 9) had higher agreement for fatigue (78.05%) than did older (67.26%, see
Table 10) or younger caregivers (66.67%, see Table 8). In general, increasing agreement
is seen as caregiver age increases.

Similarly, caregivers agreed more frequently on fever and vomiting regardless of

gender, although male caregivers (see Table 6) had slightly higher agreement for

17
vomiting than did female caregivers (97.62% vs. 94.58%) (see Table 7), while female

caregivers had slightly higher agreement for fever than did male caregivers (95.64% vs.
91.12%). Both male and female caregivers disagreed the most frequently for dry mouth
(<67%). Female caregivers tended to agree more frequently for difficulty breathing than
did male caregivers (84.12% vs. 80%), while male caregivers tended to agree more
frequently for frequent urination than did female caregivers (77.65% vs. 68.56%).
Some differences were seen between caregivers not married to and living apart from the
patient (see Table 11), caregivers not manied to and living with the patient (see Table
12), and caregivers married to and living with the patient (see Table 13). Each group
appeared to agree most frequently for fever and vomiting (>90%) and least fiequently for
dry mouth (<70%), as seen in previous groups. Caregivers not manied to and living apart
from the patient also had a low rate of disagreement for trouble sleeping (56.67%).
Caregivers not married to and living with the patient had a lower agreement than did the
other two groups for poor appetite and cough. This same group had a higher rate of
agreement for difficulty breathing than the other two groups. For trouble sleeping, dry
mouth, constipation, frequent urination and coordination problems, there was increasing
agreement as caregivers went from not married and living apart from the patient to not
married and living with the patient to married and living with the patient.

Although CCURLIV and RLTNCAT were not used as separate indicators,
agreement was still calculated for reference. The overall percent agreement for dyads
living together was 81.71% (see Table 14). For dyads living apart, the percent agreement

dropped to 76.43% (see Table 15). For dyads living together, the highest rate of

 

l8
agreement was again seen with fever (95.24%) and vomiting (95.58%), while the lowest

was seen with dry mouth (68.47%) and fatigue (69.39%). For caregiver-patient dyads
living apart from each other the highest agreement was again seen with fever (96.67%)
and vomiting (95.08%), however, the lowest was seen with dry mouth (47.46%) and

trouble sleeping (56.67%).

Spousal caregivers showed their highest agreement with fever (95.56%) and r'
vomiting (96.28%) and the lowest with dry mouth (68.89%) and fatigue (68.4%) (see
Table 16). For non-spousal caregivers, fever again had the highest agreement (94.44%), it

along with difficulty breathing (92.61%). The lowest agreement was again seen with dry

mouth (52.22%), however, trouble sleeping was next lowest (60.44%) (see Table 17).

Research Question 1 B - Sensitivity and Specificity Analysis

Sensitivity and specificity was computed for the entire sample, and for various
caregiver subgroups (<50 years, 50-64 years, >64 years, male, female, spouse, non- I
spouse, live with patient, and live apart from patient). Recall, sensitivity refers to the
proportion of caregivers who agree with the patient that a symptom is present, given that
symptom is present, while sensitivity refers to the proportion of caregivers who agree
with the patient that a symptom is absent, given that symptom is absent. For these
analyses, the patient was considered the “gold standar ”. The results are shown in Tables
18-23. For the entire sample (Table 18), the highest sensitivity was seen with fatigue
(79.20%) and diarrhea (79.73%). The lowest was seen with dry mouth (40.82%) and

coordination problems (41.03%). The highest specificity was seen with fever (97.92%)

19
and vomiting (97.05%), while the lowest was seen with fatigue (53.33%). The remaining

specificities were greater than 71%.

In the case of gender (Table 19), male caregivers had the highest sensitivity for
diarrhea (85.71%) and the lowest for difficulty breathing (30.00%). Female caregivers, on
the other hand, had the highest sensitivity for fatigue (79.76%) and the lowest for
coordination problems (40.00%). With the exception of pain, fatigue, and trouble
sleeping, specificities were all greater than 80% for both males and females. For the
exceptions, specificity varied from 53.2% to 74.66%. Male caregivers had higher
sensitivity for nausea and vomiting than female caregivers, while female caregivers had
higher sensitivity for poor appetite, cough, weight loss, frequent urination, fever, and
difficulty breathing than male caregivers. In general, female caregivers tend to have
higher sensitivity than male caregivers for more symptoms.

Table 20 outlines the results seen for the various caregiver age categories.
Younger caregivers had higher sensitivity for constipation (83.33%) than did middle-aged
(55%) or older caregivers (59.57%), although the specificity was similar. Middle-aged
caregivers had a higher sensitivity for fatigue (89.1%) than did younger (78.79%) or older
caregivers (70.21%), however, the specificity for all groups was relatively low. Middle-
age caregivers also had a much higher sensitivity for vomiting (80%) than the other
groups (~55%), although the specificity for all three groups was very high. For frequent
urination, weight loss and dry mouth, older caregivers had higher sensitivity than the

other groups. For coordination problems, middle-aged caregivers had a much lower

20
sensitivity, while for fever, younger caregivers had a much lower sensitivity. No overall

trends were observed between caregiver age categories.

The next group of caregivers analyzed consisted of three groups with results
presented in Table 21: caregivers not married to and living apart from the patient
(N S_APART), caregivers not married to and living with the patient (N S_TOG), and
caregivers married to and living with the patient (S_TOG). For NS_APART, the highest
sensitivity was seen with poor appetite (85%), and the lowest with dry mouth (26.67%).
All specificities were greater than 83% with the exception of fatigue (42.11%), pain
(69.23%) and trouble sleeping (70.27%). For NS_TOG, the highest sensitivity was seen
with trouble sleeping (87.5%) and the lowest again with dry mouth (40%). Pain, fatigue
and trouble sleeping again had lower specificities (56.25%, 62.5%, 60.87%, respectively)
as well as cough (68.42%). The rest had a specificity greater than 75%. For S_TOG, the
highest was seen with diarrhea (81.48%) and the lowest seen with coordination problems
(38.1%). Again, as seen with the other two groups, pain, fatigue and trouble sleeping had
lower specificity (74%, 55.66%, and 73.86%, respectively). The rest were all above 82%.
For diarrhea, weight loss, trouble sleeping, frequent urination and dry mouth,
NS_APART caregivers had much lower sensitivity than the other two groups. NS_TOG
caregivers appeared to have much higher sensitivity for trouble sleeping, difficulty
breathing, cough and coordination problems than the other two groups. S_TOG
caregivers had a higher sensitivity for vomiting and a lower sensitivity for poor appetite

as compared to the other two groups. Overall, caregivers not married to and living apart

21
from the patient tended to have lower sensitivity than caregivers married to and living

with the patient and caregivers not married to and living with the patient.

As previously mentioned, although CCURLIV and RLTNCAT were not used in
the final analyses, sensitivity and specificity were still calculated for reference. Results
pertaining to caregiver residence are presented in Table 22. Results for caregiver
relationship are presented in Table 23.

For those caregivers living with the patient, sensitivity was highest for diarrhea
(81.97%) and lowest for coordination problems and dry mouth (44.25, 44.44,
respectively). For caregivers living apart from the patient, highest sensitivity was seen for
fatigue (85%), while the lowest was again seen for coordination problems and dry mouth
(27.27%, 26.67%, respectively). Caregivers who lived with the patient had a much higher
sensitivity for diarrhea, trouble sleeping, vomiting, weight loss, frequent urination,
coordination problems, and dry mouth than for caregivers who lived apart from the
patient. Conversely, caregivers who lived with the patient had a much lower sensitivity
for poor appetite than for caregivers who lived apart from the patient.

Spousal caregivers had highest sensitivity for diarrhea (81.82%) and the lowest for
coordination problems (40.91%). For non-spousal caregivers, poor appetite showed the
highest sensitivity (85.71%), while dry mouth had the lowest (31.82%). For vomiting,
trouble sleeping, frequent urination, and dry mouth, spousal caregivers had much higher
sensitivity than non—spousal caregivers. However, spousal caregivers had much lower

sensitivity than non-spousal caregivers for poor appetite and difficulty breathing.

22
Research question 2 - Multiple Logistic Regression

Univariate Analysis

Multiple logistic regression was run first for each symptom analyzing only one
variable at a time. These results have been compiled and organized as follows: pain,
fatigue and trouble sleeping are displayed together on Table 24, as they are commonly
grouped together for cancer patients; gastrointestinal symptoms are displayed together on
Table 25; respiratory symptoms are displayed together on Table 26; the remaining
symptoms are grouped together as “other” on Table 27. Of the fifteen symptoms
analyzed, only nausea, poor appetite, trouble sleeping, dry mouth, and coordination
problems had one or more significant predictor variables. For nausea and poor appetite,
age was determined to be a significant predictor of disagreement (OR=0.614, p=0.010
and OR=0.638, p=0.028, respectively). As the age of the caregiver increases, the odds for
disagreement decrease. In other words, there tends to be a higher rate of agreement
between patients and older caregivers versus patients and younger caregivers, which may
suggest a spousal phenomena. This same trend is also seen for trouble sleeping, dry
mouth, and coordination problems. Additionally, for these three symptoms, caregiver
residence and caregiver relationship to the patient also become significant predictors of
disagreement. Caregivers who live with the patient are at less than half as likely to
disagree with the patient on the presence of these symptoms versus caregivers who live
apart from the patient (OR=2.098, p=0.010; OR=2.560, p=0.001; OR=2.729, p=0.004,
respectively). Further, caregivers and patients who have a spousal relationship are also

approximately half as likely to disagree with each other on the presence of the above

23
symptoms as opposed to those with a non-spousal relationship (OR=1.815, p=0.018;

OR=2.120, p=0.002; OR=2.222, p=0.012, respectively). When indicator variables for
caregiver/patient relationship and living arrangements were used in the model, similar
results were seen. Symptoms having significant associations between disagreement and
the predicator variables included trouble sleeping, dry mouth, and coordination problems.
In this model, the reference characteristics were patient and caregiver having a spousal
relationship and living together. The two comparison groups were patients and caregivers
who were not married, but lived together, and patients and caregivers who were not
married and lived apart. As seen for trouble sleeping, when comparing the first group
(not married and live together) to the reference, only one change is made: non-spouse
patients and caregivers are compared to spouse patients and caregivers. Here, no
significant difference is seen (OR=1.294, p=0.528). The next comparison is with the
living arrangements (living together compared to living apart), since the previous
comparison was not significant. For this comparison, there is a significant difference
(OR=2.159, p=0.009) and the only change was in the living arrangements. In other
words, the significance is coming from the living arrangements, and not the relationship
of the caregiver to the patient. For the remaining symptoms (other than nausea, poor
appetite, trouble sleeping, dry mouth, and coordination problems), none of the variables

tested achieved significance.

24
Multivariate Analysis

In an effort to further understand the associations, multiple logistic regression was
performed using multivariate models. The results from this analysis are presented in
Tables 28-42. As in the univariate analysis, the only symptoms with significant
predictors of disagreement were nausea (Table 34), poor appetite (Table 31), trouble
sleeping (Table 30), dry mouth (Table 37), and coordination problems (Table 40). Non-
significant results for the remaining symptoms are displayed in the remaining tables.

Once again, the age group to which the caregiver belongs is consistently seen as a
significant predictor of disagreement in each of the five symptoms mentioned above. For
nausea and trouble sleeping, there are no other variables than caregiver age group that
significantly predict disagreement, as in the univariate analysis.

For nausea, caregivers aged 65 and older were less likely to disagree with the
patient than caregivers less than 50 years of age when controlling for caregiver gender
(OR=0.435, p=0.045). Although the odds ratios for disagreement in the other models are
also decreased (in other words, less likely to disagree/more likely to agree), they were not
significant.

Poor appetite has a similar pattern as seen with nausea. Caregivers aged 65 and
older were about one third less likely to disagree with the patient than caregivers aged
less than fifty (OR=0.358, p=0.025). This association was seen only when controlling for
caregiver gender. Once again, although the odds ratios for disagreement in the other

models were also decreased, they were not significant.

25
Similar to what was observed with nausea and poor appetite, for dry mouth,

caregiver age only achieves significance when the gender of the caregiver is controlled
for. In other words, after adjusting for any extraneous effects caregiver gender may have
on disagreement, caregiver age remained significant. Here, caregivers 65 years and older
are about two fifths less likely to disagree with the patient than caregivers less than 50
years (OR=0.403, p=0.007). In the other three models, however, there is a consistent
association seen with caregivers who are not married to and live apart from the patient.
When controlling for caregiver age, this group of caregivers was about two times more
likely to disagree than caregivers married to and living with the patient (OR=2.053,
p=0.059). When controlling for caregiver gender, this group of caregivers was almost
three times more likely to disagree than the reference group (OR=2.726, p=0.001). In the
full model, controlling for caregiver age and gender, this group of caregivers was again
about two times more likely to disagree than the reference group (OR=2.066, p=0.057).

For trouble sleeping, caregivers aged 65 and older again are less likely to disagree
with the patient only when controlling for caregiver gender (OR=0.428, p=0.013).
Similarly, caregivers not married to and living apart from the patient are more likely to
disagree with the patient when compared to caregivers married to and living with the
patient only when controlling for caregiver gender (OR=2.192, p=0.009).

For coordination problems, increasing age of the caregiver is a significant
predictor of disagreement in all models. When controlling for relationship/living
arrangements, caregivers aged 65 and older were shown to have approximately one third

the chance of disagreeing as caregivers less than 50 years old (OR=.303, p=0.029). When

26
gender of the caregiver was controlled for, this association was even more pronounced,

and showed up in caregivers aged 50-64 as well. Caregivers 65 and older were about one
fourth as likely to disagree as caregivers 50 years or less (OR=.23 8, p<0.001) while
caregivers aged 50-64 were about two fifths as likely to disagree as caregivers 50 years or
less (OR=.415, p=0.047). In the model controlling for caregiver gender as well as
relationship/living arrangements, caregivers 65 and older were about one fourth as likely
to disagree as caregivers less than 50 years (OR=0.287, p=0.025). Also showing up as a
significant predictor of disagreement is relationship/living arrangements. When
controlling for caregiver gender, caregivers who were not married to the patient and who
lived apart from the patient were almost three times more likely to disagree than

caregivers who were married to and lived with the patient (OR=2.865, p=0.004).

DISCUSSION

Patients with cancer and their caregivers need to be better educated about how to
manage symptom distress. This is particularly true for elderly cancer patients, as they
tend to experience more symptoms. Several symptoms were investigated in this study.
One of the reasons various symptoms such as fatigue, pain and dry mouth are present in
such high frequencies is that the patients in this study had undergone some form of
treatment for their cancer during the month prior to interview. Although data was not
available on which patients had which type of treatment, the symptoms mentioned above
have been known to be associated with chemotherapy. Fatigue, in particular, had the
highest prevalence, which is consistent with previous literature, however, the rate of
agreement was relatively low, not consistent with previous research. This could possibly
be due to the fact that since it is often present concurrently with treatment, it may be
appearing only in intermittent phases, whereas other symptoms may be present on a more
continuous cycle.

One unique aspect of this study is the utilization of both percent agreement and
kappa coefficients to demonstrate concordance. Percent agreement would at most be
considered a crude estimate of concordance as it does not take into consideration that
agreement which would occur by chance. The kappa statistic is the most popular measure
of agreement which provides estimates beyond chance.28 It is important to realize,
however, that because kappa takes into account chance agreement, it is affected by the

distribution of data across the categories, i.e., “prevalence” of yes’s and no’s as indicators

27

28
of symptom absence or presence. To illustrate, consider the results seen for the symptom,

coordination problems, for the entire sample. The percent agreement was calculated as
86.43%, which is relatively high. The kappa statistic, however, is calculated at 0.32,
which would be considered relatively poor. Compare this kappa to that seen with poor
appetite for which a similar percent agreement is seen (86.74%). The kappa statistic here
is much higher, at .64. This occurs because the distribution of yes’s and no’s is different.
This difference is seen primarily in the distribution of yes’s (i.e., prevalence). For poor
appetite, 25.1% of the patients (17.7% of the dyads) responded “yes”, while for
coordination problems, only10.8% of the patients (4.4% of the dyads) responded “yes”.
This difference in distribution directly affects the amount of chance agreement, thus
affecting the value of kappa. With higher prevalence, the results less likely to be due to
chance. In this sense, by calculating both percent agreement and kappa, one is able to
evaluate agreement as it applies to distributions with high and low prevalence of “yes’s.

Although not all variables emerged as significant predictors of disagreement in the
regression analysis, caregiver age and relationship/living arrangements did. Five
symptoms had at least one of these variables as significant predictors. Caregiver age was
consistently found to be a predictor of disagreement with few exceptions, which were not
significant. Recall what was observed: Caregivers aged 65 and older were less than half
as likely to disagree on the presence or absence of symptoms when compared to
caregivers less than 50 years of age. Caregivers aged 50-64 years, were also found to be
less likely to disagree, although significance was observed only with the symptom,

coordination problems. Several possibilities exist for explanation. First, persons 65 years

29
and older are more likely to be retired and able to spend more time with the patient.

When looking at the distribution of caregiver age, only 12.8% are less than 50 years,
23.4% are 50-64 years, and 63.8% are 65 and older. More time spent with the patient
would reasonably imply more accurate observance of symptoms. Further, consider the
fact that all the patients included in this research are at least 65 years of age and the
majority of dyads are married to each other (74.4%). It therefore seems reasonable to
assume that as the majority of caregivers are married to patients 65 years and older, they
are more likely to be 65 years and older as well. As previously discussed in the
framework section, spouses are more likely to be committed to the caregiving role than
are non-spouses. If the spouses in this study were more likely to be 65 years and older,
this could potentially explain the finding that younger caregivers were more likely to
disagree. In fact, 91.5% of all spousal caregivers are 65 years and older.

Issues of marital status and living arrangements of the dyad are important in
caregiving research. However, these two characteristics were highly correlated with each
other. By including both in the model, each variable adjusted for the effect of the other
variable, neither was a significant predictor of disagreement. Therefore, combinations of
the two, previously described as NS_APART, NS_TOG, and S_TOG, were used to
represent the dyads in this study. Significance was seen with trouble sleeping, dry mouth
and coordination problems. When CCURLIV and RLTNCAT were analyzed as separate
variables (not controlling for other variables) the odds ratios are highly significant, when
the variables were merged into combinations describing the dyads, the odds ratios were

even higher and more significant. Here, the reference group was dyads married to and

30
living with each other. The two comparison groups were dyads not manied to and living

with each other and dyads not manied to and living apart from each other. The latter
group significantly predicted disagreement. It might be asked how does one determine
where the significance is coming from, since not married/living apart is being compared
to married/living together. In the model, when dyads not manied/living together are
compared to dyads married/living together (thus, only comparing marital status, since
living arrangements are not changed), there is no significant difference. However, when
the marital status remains, and the living arrangements are changed (living together
changes to living apart), a significant difference is seen: the odds ratio drastically
increases from 1 to greater than 2 (p<0.01). The conclusion to be drawn, therefore, is that
living arrangements are more important in predicting presence or absence of symptoms
than marital status is, although the two cannot be separated. This interpretation must be
taken cautiously as the fourth group of dyads, patients married to each other but living
apart from each other, was not available to analyze. The conclusions reached are logical
as caregivers who live with the patient, whether as a spouse, friend, or other relative,
would observe more and be informed more of what is happening physically with the
patient. Simply being a spouse, regardless of whether or not that spouse lived with the
patient, would not seemingly predict disagreement. As was seen, being a spouse, when
analyzed individually came in as a significant predictor of disagreement, because the
majority of spouses live with the patient. In dyads whose caregivers live apart from the
patient, much of the interaction may occur via telephone and the majority of the face-to-

face interaction likely occurs during short periods of time during which the caregiver is

31
probably not able to observe all of the symptom distress. Further, they are not able to

observe any symptom distress occurring during the night.

Although gender of the caregiver has been shown to be important in various
caregiving roles, the present research did not find it to be a significant predictor of
disagreement when analyzed individually. This is consistent with research done by Kurtz
et al.5

Although predictors of disagreement can be explained, as above, for some
symptoms, analyses with other symptoms showed no significant predictors of
disagreement. Pain, fatigue and trouble sleeping have long been known as symptoms
commonly associated with cancer and often are grouped together for research
purposes.”'9’3O In the present analysis, significant predictors of disagreement were
observed for trouble sleeping, but not for pain and fatigue. For trouble sleeping,
caregivers 65 years and older were shown to be less likely to disagree when compared to
caregivers 50 years or less, while caregivers not married to and living apart from the
patient were shown to be more likely to disagree with the patient than caregivers married
to and living with the patient on the presence or absence of symptoms. This may be
explained by the fact that caregivers living with the patient would be more likely to
observe and/or discuss with the patient sleeping habits. Further, as the patients are all
65+ years, spousal caregivers are more likely to be 65+ years as well. In this analysis, all
but one spouse lives with the patient and, thus, the previous argument could be assumed.
Pain and fatigue did not show any significant predictors of disagreement. Fatigue is quite

often associated with chemotherapy and radiation treatment and may represent only an

32
intermittent phase of symptom distress as opposed to symptoms which are more

ubiquitous3 1, thus possibly explaining a lack of association. Pain may be a symptom that
is relative in terms of how it is defined. What the patient refers to as pain, the caregiver
may not.

Several gastrointestinal symptoms were analyzed in this study, including poor
appetite, diarrhea, constipation, nausea, vomiting, and weight loss. Of these, only poor
appetite and nausea had significant predictors of disagreement, and of the variables
assessed, caregiver age was the only significant predictor. Recall that caregivers 65 years
and older were less than half as likely to disagree as their younger counterparts (less than
50 years). Vomiting, weight loss, and diarrhea may often be associated with
chemotherapy or radiation therapy and only be present for short, intermittent periods of
time. Perhaps, in the case of diarrhea and constipation, the symptom distress is not
discussed between the patient and the caregiver, or is not acknowledged, because of the
personal nature of the symptom. Weight loss may occur insidiously and not be as
noticeable a symptom as others may be.

The respiratory symptoms analyzed included dry mouth, cough, and difficulty
breathing. The symptoms difficulty breathing and coughing, in particular, have been
shown in the literature to be common in lung cancer patients”. Many times, these
symptoms are associated with other respiratory conditions commonly seen in lung cancer
patients”, such as emphysema, and may be attributed by the caregiver to this particular
condition. If these other conditions have been present for a long period of time it is likely

that the symptoms also may have been present for a long period of time, and may have

33
become less noticeable with time, potentially explaining a lack of association. In

particular, the nature of the questionnaire may be a problem, as it asks whether the
symptom has been present in the past two weeks. This may imply a change from the past
times to the past two weeks. In the case of dry mouth, caregivers 65 years and older were
found to be less likely to disagree with the patient than the younger comparison group.
Models run for cough and difficulty breathing, did not show any significant predictors of
disagreement. A difficulty here is that likely, coughing and breathing trouble are much
more prevalent in the lung cancer portion of the patients in this study. Unfortunately, at
the time of this study, cancer site data was not available to run the analyses on the
stratified data. In this case, perhaps predictors of disagreement would emerge.

In the case of coordination problems, significant predictors of disagreement may
be present due to the fact that this symptom would be quite noticeable. In fact, a
significant predictor of disagreement was found with caregivers 65 years and older and
with caregivers not married to and living apart from the patient. This is reasonable, as the
coordination problems would be more noticeable to a caregiver living with the patient
rather than apart from the patient. Frequent urination is a symptom that is very common
in the geriatric population in general and may not be attributed to the cancer, therefore,
masking any associations. Fever is as noticeable a symptom as coordination problems is
and may not be readily recognized. This could potentially explain a the lack of
association observed here.

There are several limitations to this study which need to be discussed. Foremost

is the argument that the same regression analysis is being run for those symptoms with

34
similar responses. Perhaps a more appropriate method of analysis in similar future

research would involve analyzing groups of symptoms that are similar to each other.
However, the present study is exploratory in nature, and a grouping of symptoms may
mask the differences that are seen. A second limitation is that the analyses were run on
the entire sample as well as stratified by caregiver characteristics, but not stratified by site
of cancer. At the time of this study, data on the site of cancer was not available, however,
future attempts to research this area should include this data. In this study, the sample
sizes for each group after being stratified by cancer site may have been too small to see
significant differences between subgroups. It is also important to note that this study
investigated the research questions symptom by symptom, and not by number of
symptoms. Future studies may benefit by including this further aspect in the research. A
third limitation in this study is the small number of independent variables analyzed.
Other variables that may introduce more findings include, but are not limited to, caregiver
race, patient gender, stage of patient’s cancer at diagnosis or interview, caregiver and/or
patient employment status, and what type of occupation the caregiver holds. As well,
subjective variables such as caregiver and/or patient depression, optimism, comorbidity
of the patient, and health status of the caregiver may provide further information in the
area of caregiving and concordance.

Based on the findings of this study, directions for future study have emerged. As
mentioned previously, a limitation of the study is the exclusion of many important
independent variables. The inclusion of these variables for analysis would likely provide

a better understanding of the caregiver-patient relationship. Further explanation of the

35
findings of this study may be found in the number of symptoms reported. This was not

analyzed in this study, however, there is a possibility that as the number of symptoms
reported increases, disagreement may be affected. Finally, an aspect that should be
considered in future research is the site of cancer. Different cancers are often associated
with different symptoms, different severity of disease, and different types of caregiving
needed. Perhaps different patterns of disagreement would emerge within each patient
group based on site of cancer.

This research is important to patients and their caregivers because it gives insight
into the caregiver-patient relationship by looking at both individual caregiver
characteristics as well as dyadic characteristics. The findings illustrate that certain groups
of caregivers (aged 65 and older, living with and married to the patient) can reasonably
act as proxies for the patient for information on presence or absence of symptoms.
However, this study shows that misunderstanding does exist between the patient and the
caregiver when certain characteristics are present (caregiver is less than 50 years old,
caregiver lives apart from and is not married to the patient). The inability to understand
and appropriately manage symptoms can add to patient and caregiver distress and burden.
Education of both the patient and the caregiver on the various aspects of symptom
distress is key to a better understanding of the caregiving role and to better

communication.

APPENDICES

36

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37

Table 2. Frequency of selected caregiver/dyad characteristics among sample

Number Percent

 

 

 

 

Caregiver Age
<50 45 12.8
50-64 82 23.4
>64 224 63.8
351 100
Caregiver Gender
Male 85 23.5
Female 277 76.5
362 100
Caregiver Residence
cg lives with pt 295 82.9
cg lives apart from pt 61 17.1
356 100
Caregiver Relation to Patient
Spouse 265 74.4
Non-spouse 91 25.6
356 100
Residence/Relationship Combination
NS_APART 61 17.1
NS_TOG 31 8.7
S_TOG 264 74.2

 

356 100

38

 

 

 

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39

Table 4. Overall patient/caregiver concordance

 

 

 

DS-l DS-2
Group Overall % Agreement Overall % Agreement
(weighted)

Total 81.24 80.78
Caregiver Residence:

with patient 81.93 81.71

apart from patient 76.19 76.43
Relationship

spouse 82.14 82.03

non-spouse 77.1 1 77.75
Caregiver Age

< 50 years 73.71 74.37

50-64 years 80.63 80.23

> 65 years 82.42 82.27
Caregiver Gender

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Female 80.76 80.56

 

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66

Table 28. Odds of disagreement for pain

 

 

 

 

 

 

Caregiver Characteristics Statistics
Reference Variable

Comparison Variable 'E [3 OR p-value
<5 0 years 1. 000

50-64 years 0798 0.450 0.103

>64 years -0.152 0.859 0.755
Spouse/live together 1. 000

Non-spouse/live together 0.213 1.237 0.641

Non-spouse/live apart -0.005 0.995 0.990
<5 0 years 1.000

50-64 years 0789 0.454 0.070

>64 years -0.161 0.851 0.658
Female 1. 000

Male 0.147 1.158 0.612
Female 1.000

Male 0.21 1 1.234 0.463
Spouse/live together 1. 000

Non-spouse/live together 0.206 1.229 0.627

Non-spouse/live apart 0.073 1.076 0.825
<5 0 years I. 000

50-64 years 0794 0.452 0.105

>64 years 0161 0.851 0.741
Female 1.000

Male 0.067 1.069 0.823
Spouse/live together 1. 000

Non-spouse/live together 0.222 1.249 0.628

Non-spouse/live apart 0.004 1.004 0.993

 

 

 

 

67

Table 29. Odds of disagreement for fatigue

 

 

 

 

 

Caregiver Characteristics Statistics
Reference Variable
Comparison Variable L [3 OR p-value
FT
<5 0 years 1. 000
50-64 years -0.759 0.468 0.109
>64 years -0.279 0.756 0.557
Spouse/live together 1.000
Non-spouse/live together -0.472 0.624 0.328
Non-spouse/live apart -0.212 0.809 0.623
<5 0 years 1. 000
50-64 years -0.573 0.564 0.166
>64 years 0.028 1.028 0.938
Female 1. 000
Male -0.158 0.853 0.578
Female 1.000
Male -0.081 0.923 0.773
Spouse/live together 1.000
Non-spouse/live together -0.485 0.616 0.284
Non-spouse/live apart -0.l26 0.881 0.689
<5 0 years I. 000
50-64 years -0.769 0.464 0.106
>64 years -0.248 0.780 0.604
Female [.000
Male -0.194 0.824 0.504
Spouse/live together 1.000
Non-spouse/live together -0.497 0.609 0.304
Non-spouse/live apart -0.235 0.791 0.587

 

 

 

 

Table 30. Odds of disagreement for trouble sleeping

68

 

 

 

 

 

Caregiver Characteristics Statistics
Reference Variable

Comparison Variable LL [3 OR p-value
< 5 0 years l 1. 000

50-64 years -0.383 0.682 0.374

>64 years -0.384 0.681 0.390
Spouse/live together 1. 000

Non-spouse/live together 0.181 1.199 0.679

Non-spouse/live apart 0.552 1.736 0.158
< 5 0 years 1. 000

50-64 years -0.692 0.500 0.071

>64 years -0.849 0.428 0.013
Female 1.000

Male 0.082 1.085 0.776
Female [.000

Male 0.067 1.070 0.814
Spouse/live together I. 000

Non-spouse/live together 0.271 1.311 0.511

Non-spouse/live apart 0.785 2.192 0.009
< 5 0 years I. 000

50-64 years -0.380 0.684 0.378

>64 years 0398 0.671 0.376
Female 1.000

Male 0.085 1.089 0.770
Spouse/live together 1. 000

Non-spouse/live together 0.195 1.212 0.663

Non-spouse/live apart 0.561 1.753 0.152

 

 

 

69

Table 31. Odds of disagreement for poor appetite

 

 

 

 

 

 

Caregiver Characteristics Statistics
Reference Variable

Comparison Variable l [3 OR p-value
<5 0 years 1. 000

50-64 years 0243 0.784 0.668

>64 years 0950 0.387 0.110
Spouse/live together 1.000

Non-spouse/live together 0.514 1 .672 0.325

Non-spouse/live apart -0.561 0.570 0.322
<5 0 years 1. 000

50-64 years -0.209 0.811 0.660

>64 years -1.026 0.358 0.025
Female 1. 000

Male 0.630 1.877 0.104
Female 1. 000

Male 0.51 1 1.667 0.159
Spouse/live together 1.000

Non-spouse/live together 0.861 2.366 0.072

Non-spouse/live apart 0.066 1.068 0.885
<50 years 1. 000

50-64 years -0.202 0.817 0.722

>64 years -1.088 0.337 0.075
Female 1. 000

Male 0.670 1.955 0.087
Spouse/live together 1. 000

Non-spouse/live together 0.590 1.803 0.272

Non-spouse/live apart -0.499 0.607 0.382

 

 

 

 

70

Table 32. Odds of disagreement for diarrhea

 

Caregiver Characteristics

Reference Variable

Statistics

 

 

 

 

Comparison Variable [3 OR p-value
<5 0 years I. 000

50-64 years 0.445 1.561 0.471

>64 years 0.203 1.224 0.751
Spouse/live together 1.000

Non-spouse/live together 0.572 1 .771 0.274

Non-spouse/live apart -0.031 0.969 0.954
<5 0 years I. 000

50-64 years 0.409 1.506 0.467

>64 years 0.12] 1.129 0.818
Female 1. 000

Male 0.047 1.048 0.905
Female 1. 000

Male 0.114 1.120 0.759
Spouse/live together 1.000

Non-spouse/live together 0.474 1.606 0.339

Non—spouse/live apart 0.014 1.014 0.975
<5 0 years I. 000

50-64 years 0.452 1.571 0.464

>64 years 0.188 1.207 0.770
Female 1.000

Male 0.098 1.103 0.801
Spouse/live together I. 000

Non-spouse/live together 0.586 1.796 0.266

Non-spouse/live apart -0.021 0.979 0.969

 

 

 

71

Table 33. Odds of disagreement for constipation

 

 

 

 

 

 

Caregiver Characteristics Statistics
Reference Variable

Comparison Variable .1 [3 OR p-value
<50 years I. 000

50-64 years 1.090 2.974 0.063

>64 years 0.668 1.951 0.378
Spouse/live together 1. 000

Non-spouse/live together 0.435 1.545 0.394

Non-spouse/live apart 0.432 1.540 0.354
<5 0 years 1. 000

50-64 years 0.884 2.420 0.103

>64 years 0.399 1.490 0.441
Female 1. 000

Male 0156 0.856 0.671
Female 1. 000

Male 01 13 0.893 0.755
Spouse/live together 1. 000

Non-spouse/live together 0.275 1.316 0.575

Non-spouse/live apart 0.291 1.338 0.434
<5 0 years I. 000

50—64 years 1.088 2.968 0.063

>64 years 0.678 1.969 0.273
Female 1. 000

Male 0058 0.944 0.876
Spouse/live together 1. 000

Non-spouse/live together 0.427 1.532 0.406

Non-spouse/live apart 0.427 1.532 0.360

 

 

 

 

72

Table 34. Odds of disagreement for nausea

 

 

 

 

 

 

Caregiver Characteristics Statistics
Reference Variable

Comparison Variable L [3 OR p-value
<50 1. 000

50-64 0202 0.817 0.695

>64 -0.919 0.399 0.096
Spouse/live together I. 000

Non-spouse/live together 0.111 1.117 0.836

Non-spouse/live apart -0.220 0.802 0.657
<5 0 years I. 000

50-64 years 0208 0.812 0.637

>64 years -0.833 0.435 0.045
Female 1. 000

Male -0.280 0.756 0.493
Female 1.000

Male -0.390 0.677 0.328
Spouse/live together 1.000

Non-spouse/live together 0.351 1.421 0.476

Non-spouse/live apart 0.253 1.288 0.511
<50 years 1. 000

50—64 years -0.211 0.810 0.683

>64 years 0873 0.418 0.1 15
Female 1. 000

Male -0.260 0.771 0.525
Spouse/live together 1. 000

Non-spouse/live together 0.090 1.094 0.866

Non-spouse/live apart -0.239 0.787 0.630

 

 

 

73

Table 35. Odds of disagreement for vomiting

 

 

 

 

 

 

Caregiver Characteristics Statistics
Reference Variable

Comparison Variable [3 OR p-value
<5 0 years I. 000

50-64 years -0.996 0.370 0.265

>64 years -0.795 0.452 0.357
Spouse/live together I. 000

Non-spouse/live together 0.640 1.897 0.412

Non-spouse/live apart -0.279 0.757 0.757
<5 0 years 1. 000

50-64 years -0.938 0.391 0.234

>64 years -0.654 0.520 0.301
Female 1. 000

Male -0.346 0.707 0.608
Female 1. 000

Male -0.271 0.763 0.684
Spouse/live together I. 000

Non-spouse/live together 0.854 2.350 0.215

Non-spouse/live apart 0.118 1.126 0.862
<5 0 years I. 000

50-64 years -1.027 0.358 0.252

>64 years -0.763 0.466 0.374
Female 1. 000

Male -0.331 0.718 0.625
Spouse/live together 1. 000

Non-spouse/live together 0.605 1.831 0.435

Non-spouse/live apart -0.328 0.720 0.716

 

 

 

74

Table 36. Odds of disagreement for weight loss

 

 

 

 

 

 

 

Caregiver Characteristics Statistics
Reference Variable

Comparison Variable [3 OR p-value
<50 years I. 000

50-64 years -0.807 0.446 0.102

>64 years -0.822 0.440 0.103
Spouse/live together 1. 000

Non-spouse/live together -0.129 0.879 0.797

Non-spouse/live apart -0.300 0.741 0.523
<5 0 years 1. 000

50-64 years -0.633 0.536 0.143

>64 years 0609 0.544 0.103
Female 1. 000

Male 0.086 1.090 0.787
Female 1. 000

Male 0.050 1.051 0.874
Spouse/live together I. 000

Non-spouse/live together 0.1 13 l .1 19 0.807

Non-spouse/live apart 0.226 1.253 0.509
<5 0 years 1. 000

50-64 years 0802 0.448 0.104

>64 years -0.837 0.433 0.099
Female 1. 000

Male 0.090 1.094 0.780
Spouse/live together I. 000

Non-spouse/live together -0.1 19 0.888 0.813

Non-spouse/live apart -0.290 0.748 0.538

 

 

 

75

Table 37. Odds of disagreement for dry mouth

 

Caregiver Characteristics

Reference Variable

Statistics

 

 

 

 

Comparison Variable 0 OR p-value
<5 0 years 1. 000

50-64 years 0411 0.663 0.333

>64 years 0477 0.621 0.278
Spouse/live together I. 000

Non-spouse/live together 0.109 1.115 0.799

Non-spouse/live apart 0.719 2.053 0.059
<5 0 years 1. 000

50-64 years 0684 0.505 0.069

>64 years -0.909 0.403 0.007
Female 1. 000

Male 0.030 1.030 0.915
Female 1. 000

Male 0.103 1.108 0.708
Spouse/live together 1. 000

Non-spouse/live together 0.376 1.456 0.343

Non-spouse/live apart 1.003 2.726 0.001
<5 0 years 1. 000

50-64 years -0.408 0.665 0.336

>64 years -0.487 0.615 0.270
Female 1. 000

Male 0.061 1.063 0.830
Spouse/live together 1. 000

Non-spouse/live together 0.117 1.124 0.786

Non-spouse/live apart 0.726 2.066 0.057

 

 

 

 

76

Table 38. Odds of disagreement for cough

 

 

 

 

 

 

Caregiver Characteristics Statistics
Reference Variable

Congarison Variable [3 OR p-value
<5 0 years 1. 000

50-64 years 0.276 1.317 0.575

>64 years 0007 0.993 0.989
Spouse/live together 1.000

Non-spouse/live together 0.744 2.105 0.104

Non-spouse/live apart 0.395 1.485 0.373
<5 0 years 1. 000

50-64 years -0.070 0.933 0.873

>64 years -0.421 0.656 0.291
Female 1. 000

Male -0.027 0.973 0.936
Female 1. 000

Male 0020 0.981 0.954
Spouse/live together 1.000

Non-spouse/live together 0.739 2.095 0.089

Non-spouse/live apart 0.422 1.524 0.235
<5 0 years 1. 000

50-64 years 0.276 1.318 0.574

>64 years -0.009 0.991 0.986
Female 1.000

Male 0.011 1.011 0.975
Spouse/live together I. 000

Non-spouse/live together 0.746 2.108 0.105

Non-spouse/live apart 0.397 1.487 0.374

 

 

77

Table 39. Odds of disagreement for difficulty breathing

 

 

 

 

 

 

 

Caregiver Characteristics Statistics
Reference Variable

Comparison Variable [3 OR p-value
<5 0 years 1. 000

50-64 years 0421 0.657 0.437

>64 years 0718 0.488 0.209
Spouse/live together 1. 000

Non-spouse/live together -1.285 0.277 0.102

Non-spouse/live apart -0.077 0.926 0.876
<5 0 years 1. 000

50-64 years -0.251 0.778 0.584

>64 years 0566 0.568 0.175
Female 1. 000

Male 0.345 1.412 0.315
Female 1. 000

Male 0.257 1.293 0.443
Spouse/live together I. 000

Non-spouse/live together -1 .014 0.363 0.178

Non-spouse/live apart 0.459 1.582 0.198
< 5 0 years 1. 000

50-64 years 0423 0.655 0.434

>64 years -0.785 0.456 0.177
Female 1. 000

Male 0.265 1.303 0.452
Spouse/live together 1. 000

Non-spouse/live together —1.270 0.281 0.109

Non-spouse/live apart -0.061 0.941 0.903

 

 

 

78

Table 40. Odds of disagreement for coordination problems

 

 

 

 

 

 

Caregiver Characteristics Statistics
Reference Variable

Comparison Variable [3 OR p-value
<5 0 years 1. 000

50-64 years -0.785 0.456 0.122

>64 years -1.196 0.303 0.029
Spouse/live together 1.000

Non-spouse/live together -0.285 0.752 0.649

Non-spouse/live apart 0.338 1.402 0.490
<5 0 years 1. 000

50-64 years -0.879 0.415 0.047

>64 years -1.434 0.238 0.000
Female 1. 000

Male 0.219 1.244 0.580
Female 1. 000

Male 0.140 1.150 0.716
Spouse/live together I. 000

Non-spouse/live together 0.1 72 1 .188 0.765

Non-spouse/live apart 1.052 2.865 0.004
<5 0 years I. 000

50-64 years -0.783 0.457 0.123

>64 years -1.249 0.287 0.025
Female 1. 000

Male 0.247 1.281 0.533
Spouse/live together I. 000

Non-spouse/live together -0.270 0.763 0.669

Non-spouse/live apart 0.359 1.432 0.466

 

 

 

79

Table 41. Odds of disagreement for frequent urination

 

 

 

 

 

Caregiver Characteristics Statistics
Reference Variable
Comparison Variable .1 [3 OR p-value
..
<5 0 years 1. 000
50-64 years -0.058 0.944 0.896
>64 years 0.025 1.026 0.956
Spouse/live together 1.000
Non-spouse/live together 0. 153 1.165 0.73 1
Non-spouse/live apart 0.565 1.760 0.154
<5 0 years 1. 000
50-64 years 0280 0.756 0.479
>64 years 0.245 0.783 0.488
Female 1. 000
Male 0.497 0.608 0.106
Female 1. 000
Male -0.402 0.669 0.179
Spouse/live together 1. 000
Non-spouse/live together -0.023 0.977 0.956
Non-spouse/live apart 0.427 1.533 0.157
<5 0 years 1. 000
50-64 years 0073 0.929 0.868
>64 years 0.095 1.100 0.836
Female 1. 000
Male -0.452 0.636 0.145
Spouse/live together 1. 000
Non-spouse/live together 0.096 1 .101 0.829
Non-spouse/live apart 0.520 1.682 0.191

 

 

 

80

Table 42. Odds of disagreement for fever

 

 

 

 

 

 

Caregiver Characteristics Statistics
Reference Variable

Comparison Variable 0 OR p-value
<5 0 years 1. 000

50-64 years 0.155 1.168 0.848

>64 years -0.809 0.445 0.356
Spouse/live together 1.000

Non-spouse/live together 0.539 1.715 0.468

Non-spouse/live apart -0.416 0.660 0.605
<5 0 years I. 000

50-64 years 0.255 1.290 0.723

>64 years -0.839 0.432 0.250
Female 1. 000

Male 0.588 1.801 0.318
Female 1.000

Male 0.357 1.429 0.526
Spouse/live together 1.000

Non-spouse/live together 0.887 2.427 0.198

Non-spouse/live apart 0.171 1.186 0.802
<5 0 years 1. 000

50-64 years 0.198 1.219 0.808

>64 years -0.931 0.394 0.300
Female 1.000

Male 0.615 1.849 0.297
Spouse/live together 1.000

Non-spouse/live together 0.598 1.819 0.432

Non-spouse/live apart -0.368 0.692 0.648

 

 

 

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ENDNOTES

ENDNOTES

l SEER Cancer Statistics Review, 1973-1994; American Cancer Society Cancer Facts &
Figures - 1997.

2 Grossman SA, Sheidler VR, Swedeen K, Mucenski J, Piantadosi S. Correlation of
Patient and Caregiver Ratings of Cancer Pain. Journal of Pain and Symptom
Management 6(2):53-57 1991.

3 Curtis AE, Femsler J1. Quality of Life of Oncology Hospice Patients: A Comparison
of Patient and Primary Caregiver Reports. Oncology Nursing Forum 16(1):49-53 1989.

4 Neal MB, Ingersoll-Dayton B, Starrels ME. Gender and relationship differences in

caregiving patterns and consequences among employed caregivers. The Gerontologist
1997;37:804-816.

5 Ingersoll-Dayton B, Starrels ME, Dowler D. Caregiving for parents and parent-in law:
is gender important? The Gerontologist 1996;36:483-491.

6 Young RF, Kahana E. Specifying caregiver outcomes: gender and relationship aspects
of caregiving strain. The Gerontologist 1989;29:660-665.

7 Kramer BJ, Kipnis S. Eldercare and work-role conflict: toward an understanding of
gender differences in caregiver burden. The Gerontologist 1995;35:340-348

8 Clipp EC, George LK. Patients with cancer and their spouse caregivers. Cancer
1992;69:1075-1079.

9 Dwyer J W, Coward RT. Gender, family, and long-terrn care of the elderly. In Gender,
families, and eldercare. J W Dwyer & RT Coward (Eds). pp. 151-162. Newbury Park,
CA: Sage.

‘0 Miller B, Cafasso L. Gender differences in caregiving: fact or artifact. The
Gerontologist 1992;32:498-507.

11 Kurtz ME, Kurtz J C, Given CG, Given G. Concordance of cancer patient and
caregiver symptom reports. Cancer Practice 1996;4z185-190.

'2 Barusch AS, Spaid WM. Gender differences in caregiving: why do wives report
greater burden? The Gerontologist 1989;29:667-676.

82

 

83

‘3 Stone R, Cafferata GL, Sangl J. Caregivers of the frail elderly: a national profile. The
Gerontologist 1987;27:616-626.

'4 Finley NJ. Theories of family labor as applied to gender differences in caregiving for
elderly parents. Journal of Marriage and the Family 1989;51:79-86.

‘5 Horowitz A. Sons and daughters as caregivers to older parents: differences in role
performance and consequences. The Gerontologist 1985;25:612-617

'6 Stoller EP. Parental caregiving by adult children. Journal of Marriage and the Family
1983;45:851-858.

'7 Stoller EP. Males as helpers: the role of sons, relatives, and friends. The Gerontologist
1990;30:228-235.

'8 Stone R, Short P. The competing demands of employment and informal caregiving to
disables elders. Medical Care 1990;28:513-526.

19 Chang C, White-Means S. The men who care: An analysis of male primary caregivers
who care for frail elderly at home. The Journal of Applied Gerontology 1991 ;10:343-
358.

2° Chappell NL. Living arrangements and sources of caregiving. The Journal of
Gerontology 1991 ;46:S 1 -S8.

2' Tennstedt SL, Crawford S, McKinlay JB. Determining the pattern of community care:
is coresidence more important than caregiver relationship? The Journal of Gerontology
1993;48:874-883.

22 Fitting MD, Rabins PV. Men and women: do they give care differently? Generations
1985;Fall:23-26.

23 Fitting MD, Rabins PV, Lucas MJ. Caregivers for dementia patients: A comparison of
men and women. Paper presented at the 37‘h Annual Scientific Meeting of the
Gerontological Society of America, San Antonio. 1984.

24 Portnoy RK. Pain Management in the Older Cancer Patient. Oncology 6(2)
Supplementz86-98 1992.

25 Brescia FJ, Adler D, Gray, G. Hospitalized Advanced Cancer Patients: A Profile.
Journal of Pain and Symptom Management 5:222-227 1990.

26Hodgkins M, Albert D, and Daltroy L. Comparing Patients’ and their Physicians’
Assessments of Pain. Pain 23:273-277 1985.

84

27 Given BA, Given CW. Family Home Care for Cancer — A Community-Based Model.
Grant #ROl NRCA 01915, funded by the National Institute for Nursing Research and
the National Cancer Institute. September, l993-August, 1997.

28 Guggenmoos-Holzrnann I. How reliable are chance-corrected measures of agreement?
Statistics in Medicine 12:2191-2205 1993.

29 Sheehan DC, Forman WB. Symptomatic management of the older person with cancer.
Clinics in Geriatric Medicine 13:203-219 1997.

30 Dunlop GM. A study of the relative frequency and importance of gastrointestinal
symptoms, and weakness in patients with far advanced cancer: student paper.
Palliative Medicine 4:37-43 1989.

3 ' Irvine DM, Vincent L, Bubela N, Thompson L, Graydon J. A critical appraisal of the
research literature investigating fatigue in the individual with cancer. Cancer Nursing
14:188-1991991.

32 Brown M, Carrieri V, Janson-Bjerkle S, Dodd M J. Lung cancer and dyspnea: the
patient’s perception. Oncology Nursing Forum 13:19-24 1986.

33 Sarna L. Correlates of symptom distress in women with lung cancer. Cancer Practice
1(1)21-281993.

 

BIBLIOGRAPHY

BIBLIOGRAPHY

Barusch AS, Spaid WM. Gender differences in caregiving: Why do wives report greater
burden? The Gerontologist 1989;29:667-676.

Brescia FJ, Adler D, Gray G, et a1. Hospitalized Advanced Cancer Patients: A Profile.
Journal of Pain and Symptom Management 5:222-227 1990.

Brown M, Carrieri V, Janson-Bjerkle S, Dodd M J. Lung cancer and dyspnea: The
patient’s perception. Oncology Nursing Forum 13:19-24 1986.

Chang C, White-Means S. The men who care: An analysis of male primary caregivers
who care for frail elderly at home. The Journal of Applied Gerontology 1991;10:343-
358.

Chappell NL. Living arrangements and sources of caregiving. The Journal of
Gerontology 1991 ;46:S 1-88.

Clipp EC, George LK. Patients with cancer and their spouse caregivers. Cancer
1992;69: 1075- 1 079.

Curtis AE, F emsler J 1. Quality of Life of Oncology Hospice Patients: A Comparison of
Patient and Primary Caregiver Reports. Oncology Nursing Forum 16(1):49-53 1989.

Dunlop GM. A study of the relative frequency and importance of gastrointestinal
symptoms, and weakness in patients with far advanced cancer: student paper.
Palliative Medicine 4:37-43 1989.

Dwyer J W, Coward RT. Gender, family, and long-terrn care of the elderly. In Gender,
families, and eldercare. JW Dwyer & RT Coward (Eds). pp. 151-162. Newbury
Park, CA: Sage.

Finley NJ. Theories of family labor as applied to gender differences in caregiving for
elderly parents. Journal of Marriage and the Family 1989;51:79-86.

Fitting MD, Rabins PV, Lucas MJ. Caregivers for dementia patients: A comparison of
men and women. Paper presented at the 37th Annual Scientific Meeting of the
Gerontological Society of America, San Antonio. 1984.

85

86

Fitting MD, Rabins PV. Men and women: do they give care difi’erently? Generations
1985;Fall:23-26.

Given BA, Given CW. Family Home Care for Cancer — A Community-Based Model.
Grant #ROl NRCA 01915, funded by the National Institute for Nursing Research and
the National Cancer Institute. September, 1993-August, 1997.

Grossman SA, Sheidler VR, Swedeen K, Mucenski J, Piantadosi S. Correlation of
Patient and Caregiver Ratings of Cancer Pain. Journal of Pain and Symptom
Management 6(2):53-57 1991.

Guggenmoos-Holzmann I. How reliable are chance-corrected measures of agreement?
Statistics in Medicine 12:2191-2205 1993.

Hodgkins M, Albert D, Daltroy L. Comparing Patients’ and their Physicians’
Assessments of Pain. Pain 23:273-277 1985.

Horowitz A. Sons and daughters as caregivers to older parents: differences in role
performance and consequences. The Gerontologist 1985;25:612-617

Ingersoll-Dayton B, Starrels ME, Dowler D. Caregiving for parents and parent-in law: is
gender important? The Gerontologist 1996;36:483-491.

Irvine DM, Vincent L, Bubela N, Thompson L, Graydon J. A critical appraisal of the
research literature investigating fatigue in the individual with cancer. Cancer Nursing
14:188-1991991.

Kramer BJ, Kipnis S. Eldercare and work-role conflict: toward an understanding of
gender differences in caregiver burden. The Gerontologist 1995;35:340—348

Kurtz ME, Kurtz JC, Given CG, Given G. Concordance of cancer patient and caregiver
symptom reports. Cancer Practice 1996;4: 1 85-190.

Miller B, Cafasso L. Gender differences in caregiving: fact or artifact. The Gerontologist
1992;32:498-507.

Neal MB, Ingersoll-Dayton B, Starrels ME. Gender and relationship differences in

caregiving patterns and consequences among employed caregivers. The
Gerontologist 1997;37:804-8 1 6.

Portnoy R.K. Pain Management in the Older Cancer Patient. Oncology 6(2)
Supplementz86-98 1992.

Sarna L. Correlates of symptom distress in women with lung cancer. Cancer Practice
1(1)21-281993.

87

SEER Cancer Statistics Review, 1973-1994; American Cancer Society Cancer Facts &
Figures - 1997.

Sheehan DC, Forman WB. Symptomatic management of the older person with cancer.
Clinics in Geriatric Medicine 13:203-219 1997.

Stoller EP. Males as helpers: the role of sons, relatives, and friends. The Gerontologist
1990;30:228-235.

Stoller EP. Parental caregiving by adult children. Journal of Marriage and the Family
1983;45:851-858.

Stone R, Cafferata GL, Sangl J. Caregivers of the frail elderly: a national profile. The
Gerontologist 1 987;27:616-626.

Stone R, Short P. The competing demands of employment and informal caregiving to
disables elders. Medical Care 1990;28:513-526.

Tennstedt SL, Crawford S, McKinlay J B. Determining the pattern of commmiity care: is
coresidence more important than caregiver relationship? The Journal of Gerontology
1993 ;48:S74-S83.

Young RF, Kahana E. Specifying caregiver outcomes: gender and relationship aspects of
caregiving strain. The Gerontologist 1989;29:660-665.

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