Psycho-Oncology

Psycho-Oncology 22: 403–410 (2013)

Published online 2 December 2011 in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/pon.2104

Quality of life and mental health in caregivers of

outpatients with advanced cancer
Deepa Wadhwa1, Debika Burman3,4, Nadia Swami3,4, Gary Rodin2,3,4, Christopher Lo2,3 and
Camilla Zimmermann1,2,3,4*
1
Division of Medical Oncology and Haematology, Department of Medicine, University of Toronto, Toronto, Canada
2
Department of Psychiatry, University of Toronto, Toronto, Canada
3
Department of Psychosocial Oncology and Palliative Care, Princess Margaret Hospital, University Health Network, Toronto, Canada
4
Campbell Family Cancer Research Institute, Ontario Cancer Institute, Princess Margaret Hospital, University Health Network, Toronto, Canada

*Correspondence to: Abstract

Department of Psychosocial
Oncology and Palliative Care,
Princess Margaret Hospital,
University Health Network, 610
University Ave., 16-712, Toronto,
Ontario, Canada M5G 2M9.
E-mail: camilla.zimmermann@
uhn.on.ca
Received: 4 June 2011
Revised: 23 October 2011
Accepted: 27 October 2011
Objective: This study evaluates the quality of life (QOL) and mental health (MH) of caregivers of
patients with advanced cancer who are receiving ambulatory oncology care and associations
with patient, caregiver and care-related characteristics.
Methods: Patients with advanced gastrointestinal, genitourinary, breast, lung or gynaecologic
cancer, and their caregivers, were recruited from 24 medical oncology clinics for a cluster-
randomized trial of early palliative care. Caregivers completed the Caregiver QOL—Cancer
scale and the Medical Outcomes Study Short Form, version 2, and a questionnaire including
care-related factors such as hours/day providing care and change in work situation. Patients
completed a demographic questionnaire and measures of their QOL and symptom severity.
Associations of these factors with caregiver QOL and MH were examined using linear regres-
sion analyses.
Results: Of the 191 caregivers, 84% were spouses/partners, 90% cohabited with the patient,
half were working and 25% had a change in work situation since the patient’s diagnosis. On
multiple regression analysis, better caregiver QOL was associated with better caregiver MH
and patient physical well-being and with not providing care for other dependents. Worse
caregiver MH was associated with female caregiver sex, worse patient emotional well-being,
more hours spent caregiving and change in the caregiver’s work situation.
Conclusions: Caregivers of ambulatory patients with advanced cancer may have compro-
mised QOL and MH associated with worse patient physical and emotional well-being and with
simultaneously caring for others and working outside the home. Early palliative care interven-
tions directed at patient symptoms and caregiver support may improve QOL in this population.
Copyright © 2011 John Wiley & Sons, Ltd.
Keywords: caregiver; advanced cancer; mental health; quality of life; palliative care

Introduction evaluate whether and how these caregivers might

In the last few decades, cancer care has shifted from the
hospital inpatient setting to ambulatory settings.
Combined with an ageing population and increased
fiscal pressure on health care systems, this shift has
resulted in families and other informal caregivers
assuming increasing responsibility for patient care
[1]. Patients with advanced cancer often receive cancer
treatment well into the palliative phase of their illness,
with referrals to hospice or palliative care occurring
late in the disease course [2–4]. The caregiving
requirements are considerable for these seriously ill
outpatients with cancer, who face complex medical
problems as well as toxicities of treatment, without
the support of a hospice team. However, few studies
have examined the quality of life (QOL) of this group
of caregivers [5]. It is important to do so in order to
benefit from early palliative care interventions.
Caregiver QOL is a multidimensional construct
encompassing a broad range of elements including
physical health, emotional well-being, social function-
ing, financial welfare and spirituality [6]. It is related
to, but distinct from caregiver burden [6], a construct
originating in the geriatric literature, which has been
defined as the perception of distress related to caregiv-
ing tasks [7]. Caregiver QOL is by definition subjective
and may vary between individuals based on differing
personal values, perceptions and the stage of disease
in patients for whom care is being provided [8].
A recent review of randomized trials for caregivers
of cancer patients identified a need for research to
determine patient and caregiver factors that could be
targets for intervention [9]. Further, a review of
research on the QOL of caregivers of cancer survivors

Copyright © 2011 John Wiley & Sons, Ltd.

404
revealed few studies beyond the acute survivorship
phase of diagnosis and treatment [8]. Despite the
heightened caregiving burden in the palliative phase
of illness [10], studies of QOL at this stage are particu-
larly sparse. Those that have been conducted were in
mixed samples, comparing QOL in patients with ad-
vanced disease to those in acute phases of illness [11],
or were small studies of patients who were already receiv-
ing hospice care [12–14]. To our knowledge, only one
study has focused specifically on the QOL of caregivers
of patients in the ‘late palliative phase’, which the authors
described as ‘a condition beyond the curative phase, but
[which] is not considered to be terminal’ [5]; these patients
had metastatic cancer but a clinical prognosis of more than
4 months. This study, which was conducted in Norway,
compared caregiver physical health and mental health
(MH), measured by the Medical Outcomes Study Short
Form (SF-36), with previously reported gender-specific
norms. Physical QOL was higher than the norm in both
genders, whereas MH was lower in male caregivers. This
study did not, however, assess factors associated with
QOL and MH in this population.
It has been theorized that variables associated with
the caregiving experience and MH of caregivers of
patients with cancer can be categorized into patient,
caregiver and care-related factors [15]. We have used
this model to categorize possible factors associated
with caregiver QOL. Potential patient-related factors
include demographic and disease-related characteris-
tics; caregiver-related factors include demographics,
physical health and MH, other roles (occupational,
family and social), living arrangements and the quality
of the relationship with the patient; and care-related
factors include the intensity and duration of care, help
with caregiving and change in activities as a conse-
quence of caregiving [15]. Caregiver QOL has been
found to be more strongly related to the MH than to
the physical health of the caregiver [6,16]. Therefore,
in addition to examining the influence of MH on
QOL, as has been done previously [17], we also exam-
ined factors that may specifically affect caregiver MH.
The purpose of the present study was to examine the
QOL and MH of caregivers of ambulatory patients with
advanced cancer and identify associations with patient,
caregiver and care-related variables. We hypothesized
that caregiver QOL would be related to caregiver char-
acteristics, such as mental and physical health, female
sex and younger age; to the QOL of the patient and to
care-related characteristics, such as the amount of care
provided and presence of and/or impact on roles other
than that of caregiver. For caregiver MH, we had
similar hypotheses but also that there would be an asso-
ciation with patient emotional well-being.
Patients and methods
Participants
Patients and their caregivers were recruited from 24
outpatient medical oncology clinics between December
Copyright © 2011 John Wiley & Sons, Ltd.
D. Wadhwa et al.
2006 and May 2010, at Princess Margaret Hospital, a
comprehensive cancer centre in Toronto, Canada. This
study was undertaken as part of a cluster-randomized
controlled trial of early intervention by a specialized
palliative care team versus conventional oncology care
in patients with advanced cancer, the main purpose of
which was to assess whether early palliative care
improves patient QOL; caregiver QOL was included
as a secondary outcome. The methods have been
described previously [18] but are summarized below.
Eligible patients had a diagnosis of stage IV gastroin-
testinal, genitourinary, breast, or gynaecological
cancer, stage III/IV lung cancer, or locally advanced
pancreatic or oesophageal cancer. Other patient
eligibility criteria included an Eastern Cooperative
Oncology Group performance status score of 0–2 [19]
and a clinical prognosis of 6 months to 2 years (both
determined by the patient’s primary oncologist). Each
patient was asked to identify his/her primary caregiver,
who was subsequently approached in person (if pres-
ent) or by telephone to request study participation and
to seek informed consent. Exclusion criteria for both
patients and caregivers were age less than 18 years or
insufficient English to complete the questionnaires;
patients were also excluded if they obtained a low score
on a cognitive screening test [20] (Short Orientation–
Memory–Concentration Test score <20, or >10 errors).
All caregivers and patients provided written
informed consent; those who declined to proceed with
the trial were asked for written consent to complete
baseline measures only. Patients and caregivers
completed measures at baseline and monthly for
4 months; for this study, baseline data were used for
all analyses. The study was approved by the Research
Ethics Board of the University Health Network.
Measures
Patients and caregivers completed a demographic ques-
tionnaire at accrual; items included age, gender, ethnic-
ity, religion, level of education, marital status, living
arrangement, employment status and household
income. Other items included on this questionnaire
were the caregiver’s relationship to the patient; the
number of hours per day spent providing care and
whether caregivers had any chronic illness or disability,
cared for others in addition to the patient, had formal or
informal help caring for the patient or had experienced
a change in their work or living situation following the
patient’s diagnosis. Patient medical records were reviewed
by research staff to obtain patient cancer diagnosis and
stage, cancer treatment status and comorbid diagnoses.
Caregiver QOL was measured using the Caregiver
QOL Index—Cancer (CQOLC). This is a multidimen-
sional tool developed through in-depth interviews with
caregivers of patients with cancer and is the only
validated measure designed specifically for caregivers
of patients with cancer [6]. It has been internationally
validated, including in curative and palliative settings
[16,21], and uses a five-point Likert-type scale to
Psycho-Oncology 22: 403–410 (2013)
DOI: 10.1002/pon
Quality of life in caregivers of advanced cancer outpatients
measure physical, emotional, social family/financial
and spiritual elements of caregiver QOL. Each item is
rated from 0 to 4; the 35 items are summed to generate
the total score.
The Medical Outcomes Study Short Form, version 2
(SF-36v2), was used to measure caregiver health and
functioning [22]. Its 36 items are organized into eight
subscales: physical functioning, role limitation due to
physical health problems, bodily pain, general health,
vitality (energy/fatigue), social functioning, role limita-
tion due to emotional problems and MH. Items from
these subscales are combined into two summary scores:
physical component summary and mental component
summary, evaluating physical health and MH, respec-
tively [22]. These summary scores were calculated
using SF-36v2 scoring software, which uses norm-
based scoring: scores are T-transformed so that in a
US norm population, the mean is 50 and the standard
deviation 10. It is well validated [23,24] and has been
used as an outcome in other studies assessing the health
of caregivers of cancer patients [10,25].
The Functional Assessment of Cancer Therapy—
General is a 27-item internationally validated measure
of health-related QOL [26] and was used in this study
to measure patient QOL. It has four subscales measur-
ing physical, social/family, emotional and functional
well-being, which are summed to obtain the total Func-
tional Assessment of Cancer Therapy—General score.
The Edmonton Symptom Assessment System is a
validated, self-administered tool, which uses a numeri-
cal scale from 0 to 10 to measure the severity of nine
main symptoms in patients with advanced disease
(pain, fatigue, drowsiness, nausea, anxiety, depression,
appetite, dyspnoea and sense of well-being) [27].
Because no time window is stipulated, we added
instructions that symptoms were to be rated based on
the previous 24-h period [28]. The Edmonton Symp-
tom Assessment System Distress Score is the sum of
the nine symptom ratings and ranges from 0 to 90, with
higher scores indicating greater symptom burden [27].
Additional patient measures included the Eastern
Cooperative Oncology Group measure of performance
status [19] and the Charlson Comorbidity Index, which
generates a weighted score based on the presence of
various medical illnesses [29] and is the most
commonly used measure of comorbidity for patients
with cancer [30].
Statistical analysis
Descriptive statistics were calculated for all variables.
Simple linear regression was used to determine the
impact of patient, caregiver and care-related character-
istics on caregiver QOL and MH; backward stepwise
multiple regression was used to determine factors that
were independently associated with caregiver QOL.
Variables significant at p ≤ 0.05 in the simple regres-
sion analyses were included in the multiple regression
model. Employment status was excluded due to
collinearity with age. When both patient and caregiver
Copyright © 2011 John Wiley & Sons, Ltd.
405
versions of a single variable were significant on simple
linear regression analysis (e.g. age), only the caregiver
variable was included. Analyses were performed using
SPSS, version 19.0 (IBM Corporation, Somers, NY,
USA). A two-sided p ≤ 0.05 was considered statisti-
cally significant.
Results
Caregiver and patient characteristics
Of the 1016 eligible patients approached for enrolment
into the randomized controlled trial, 477 identified a
caregiver; 105 caregivers were not approached for the
following reasons: patient refused for the caregiver
(n = 41), patient withdrew before the caregiver could
be approached (n = 20), the caregiver could not be
reached (n = 12) and reason not indicated (n = 32). Of
the 372 caregivers approached, 182 consented and were
enrolled; a further nine consented to completion of
baseline measures but not to participation in the full
trial. Thus, the study sample included 191 caregiver–
patient pairs.
Caregiver and patient demographic and medical
characteristics are shown in Table 1. The majority of
caregivers were women, lived with the patient and/or
were their spouse/partner; 35% reported caring for
others, in addition to the patient (children ≤ 18,
n = 44; parents, n = 13; spouse/partner, n = 7; other
family member, n = 21). Caregivers spent a mean of
3.5 h/day caring for the patient (3.7 h/day for female
and 3.3 h/day for male caregivers), and 40% (76/191)
had formal (13/76) or informal (69/76) help. Informal
help was from family (59/69), friends (4/69), family
and friends (5/69) or unknown (1/69); formal help
was through the home care system (11/13) or privately
paid (2/13). Approximately half of caregivers were
employed, and 25% described a change in work situa-
tion, the most common being a reduction in work hours
(12% of participants; Table 2). Mean scores for
caregiver and patient outcome measures are presented
in Table 3.
Factors associated with caregiver quality of life and
mental health
Results of the simple and multiple regression analyses
examining caregiver and patient factors related to care-
giver QOL and MH are shown in Tables 4 and 5. On
multiple regression analysis, better caregiver MH and
better patient physical well-being were associated with
better caregiver QOL, whereas providing care for addi-
tional individuals other than the patient was associated
with worse caregiver QOL. Because items pertaining to
MH are included in the CQOLC scale, we conducted
another analysis in which we removed all items related
to MH from the CQOLC. The SF-36 mental compo-
nent summary score remained significantly associated
with caregiver QOL (p < 0.0001).
Psycho-Oncology 22: 403–410 (2013)
DOI: 10.1002/pon
406 D. Wadhwa et al.

Table 1. Patient and caregiver demographic and medical characteristics (n = 191)

Patients Caregivers

Characteristic N (%) Characteristic N (%)

Age [median (min–max)] 61.0 (28–88) Age [median (min–max)] 57.0 (22–83)
Female sex 89 (46.6) Female sex 124 (64.9)
Primary tumour site Relationship to patient
GI 72 (37.7) Spouse/partner 160 (83.8)
Lung 31 (16.2) Son/daughter 21 (11.0)
Genitourinary 34 (17.8) Other 10 (5.2)
Gynaecology 21 (11.0) Marital status
Breast 33 (17.3) Married/common law 182 (95.8)
Marital status Separated/divorced 1 (0.5)
Married/common law 176 (92.1) Single 7 (3.7)
Separated/divorced 8 (4.2) Living with patient 171 (89.5)
Single 1 (0.5) Caring for others (other than patient) 67 (35.1)
Widowed 6 (3.1) Non-European ethnicity 34 (17.8)
Living with others 184 (96.3) Religion
Caring for others 55 (28.9) Catholic/Christian 133 (69.6)
Non-European ethnicity 29 (15.2) Non-Catholic/Non-Christian 13 (6.8)
Religion Atheist/agnostic/none 45 (23.6)
Catholic/Christian 124 (70.1) Education
Non-Catholic/Non-Christian 16 (9.0) High school or less 65 (34.6)
Atheist/agnostic/none 37 (20.9) College/university/other 123 (65.4)
Education Employment status
High school or less 67 (35.4) Retired 68 (35.6)
College/university/other 122 (64.6) Employed 94 (49.2)
Employment status Unemployed/Student 25 (13.1)
Retired 85 (44.5) On disability 4 (2.1)
Employed 39 (20.4) Income
Unemployed 26 (13.6) <$14 999 5 (3.6)
On disability 41 (21.5) $15 000–29 999 13 (9.4)
Income $30 000–59 999 36 (26.1)
<$14 999 6 (4.4) ≥$60 000 84 (60.9)
$15 000–29 999 13 (9.6) Change in work situation 48 (25.1)
$30 000–59 999 38 (28.1) Change in living situation 17 (8.9)
≥$60 000 78 (57.8) Hours/day spent caregiving [mean (SD)] 3.5 (5.5)
Treatment status Help caring for patient 76 (39.8)
Receiving active treatment 141 (73.8) Own chronic illness or disability 35 (19.7)
Awaiting new line of treatment 28 (14.7)
Not on active treatment 22 (11.5)

Factors associated with worse caregiver MH on not yet receiving support from formal hospice or palli-
multiple regression analyses were female caregiver ative care services. Caregivers were generally in good
sex, change in work situation, spending a larger physical health, as indicated by the SF-36v2 physical
number of hours per day on caregiving tasks and caring component summary score of 52.5, which is higher
for patients with worse emotional well-being. than the US population norm of 50 and higher than
that reported in caregivers in a home hospice setting
Discussion (46.0). However, the score for the mental component
summary was only 41.0. This is not only lower than
To our knowledge, this study is the first to assess the US norm of 50 but also lower than the values of
factors associated with the QOL and MH of caregivers 44.4 in men and 43.5 in women recorded in a
of ambulatory patients with advanced cancer who are Norwegian sample of caregivers of ambulatory patients
with advanced cancer [5]. It is also lower than the value
of 44.0 found in a study of caregivers in a US home
Table 2. Changes in caregiver work situation following hospice setting [16], despite the fact that overall
patient’s cancer diagnosis
caregiver QOL in our sample was not as compromised
Total sample, n = 191 as that of caregivers in that study (CQOLC score 99 vs
No. Percent (%) 85). Thus, there appears to be considerable mental
Change in work situation 48 25.1
strain associated with caring for patients with advanced
Less hours worked 22 11.5 cancer who are still receiving hospital-based ambula-
Quit job 9 4.7 tory care.
On leave (four paid, four unpaid) 8 4.2 Despite the fact that the caregivers in this study were
Changed job 5 2.6 caring for patients with relatively good performance
Lost job 4 2.1
status, caregiver QOL correlated strongly with patient

Copyright © 2011 John Wiley & Sons, Ltd. Psycho-Oncology 22: 403–410 (2013)
DOI: 10.1002/pon
Quality of life in caregivers of advanced cancer outpatients 407

Table 3. Mean scores for patient and caregiver outcome measures (n = 191)
Patients Caregivers

Scale and subscale(s) Mean (SD) Scale and subscale(s) Mean (SD)

ECOG performance status SF-36v2

0 52 (27.2) Physical component summary (PCS) 52.5 (8.9)
1 124 (64.9) Mental component summary (MCS) 41.0 (12.3)
2 15 (7.9)
Charlson Comorbidity Index [mean (SD)] 0.49 (0.8) Caregiver QOL—Cancer 98.8 (15.8)
0 125 (65.4)
1 45 (23.6)
≥2 21 (11.0)
ESAS Symptom Distress Score 25.1 (15.4)
FACT-G
Physical well-being (PWB) 18.7 (5.7)
Social well-being (SWB) 22.8 (3.7)
Emotional well-being (EWB) 16.5 (5.0)
Functional well-being (FWB) 17.0 (6.1)
Total 74.6 (15.9)

Score ranges for measures: ESAS Symptom Distress Score 0–90; FACT-G: Total, 0–108; PWB, 0–28; SWB, 0–28; EWB, 0–24; FWB, 0–28; SF-36v2 PCS, 22.4-59.0; MCS,
10.6-62.3; Caregiver QOL—Cancer, 0–140.
ECOG, Eastern Cooperative Oncology Group; ESAS, Edmonton Symptom Assessment System; FACT-G, Functional Assessment of Cancer Therapy—General.

physical well-being. Similarly, caregiver MH was
associated with patient emotional well-being. There
are few studies that have compared QOL of caregivers
to that of patients [8]. A small study of 30 ovarian can-
cer patient–caregiver pairs showed a direct relationship
between the QOL of women with cancer and the QOL
of their caregivers [31], as did two studies in cancer
survivors [11,32]. Our findings are consistent with
these studies, as well as with others showing that the
QOL of family members is worse in those caring for
patients with advanced disease [33,34] and that there
is an association between caregiver and patient depres-
sion scores [35]. In contrast, a study in the hospice set-
ting found no association of caregiver QOL with the
patient’s physical state [13]. This may be due to the
support provided by health care professionals in
hospice care or due to the more uniformly poor patient
QOL in this population.
There are few studies documenting the socio-
economic hardship experienced by caregivers of patients

Table 4. Caregiver and patient variables associated with caregiver quality of life (n = 191)
Simple regression analysisa Multiple regression analysis (adjusted R2 = 0.456)

Variable Bb SE P b SE P

Caregiver variables
Female 4.869 2.4 0.047
Age 0.427 0.1 <0.001
Unemployedc 7.623 3.6 0.034
Retiredc 6.096 2.4 0.013
SF36-v2 mental component summary 0.817 0.1 <0.001 0.761 0.1 <0.001
Care-related variables
Caring for others 9.067 2.4 <0.001 6.214 2.3 0.007
Change in work situation 8.607 2.6 0.001
Patient variables
Age 0.303 0.1 0.004
Income ≥ $60 000 5.919 2.8 0.038
ECOG performance status score 5.432 2.1 0.010
Edmonton Symptom Assessment System
Pain 0.937 0.4 0.033
Depression 1.482 0.5 0.002
Anxiety 0.984 0.4 0.021
FACT-G
Physical well-being subscale score 0.700 0.2 0.001 0.565 0.2 0.004
Emotional well-being subscale score 0.763 0.2 0.001
Functional well-being subscale score 0.538 0.2 0.007

ECOG, Eastern Cooperative Oncology Group; FACT-G, Functional Assessment of Cancer Therapy—General.
a
Only variables that were significant on simple regression analysis at p ≤ 0.05 and were therefore included in the initial multiple regression analysis are shown. Other vari-
ables examined on simple regression analysis were caregiver disability or chronic illness, caregiver spouse of patient, caregiver living with patient, caregiver ethnicity, care-
giver education, caregiver income, SF36 v2 physical component summary, number of hours per day spent on caregiving tasks, receiving formal help, receiving informal help
(no help was the referent), patient gender, tumour type, patient receiving no cancer therapy, patient awaiting new line of treatment (patient receiving treatment was the
referent), patient Charlson comorbidity, patient fatigue, nausea, appetite, well-being and dyspnoea.
b
B, unstandardized regression coefficient.
c
Not included in multiple regression analysis due to collinearity with age.

Copyright © 2011 John Wiley & Sons, Ltd. Psycho-Oncology 22: 403–410 (2013)
DOI: 10.1002/pon
408 D. Wadhwa et al.

Table 5. Caregiver and patient factors associated with caregiver mental health (n = 191)
Simple regression analysisa Multiple regression analysis (adjusted R2 = 0.193)

Variable Bb SE P b SE P

Caregiver variables
Female 4.019 1.9 0.038 5.716 1.9 0.003
Age 0.283 0.1 <0.001
Unemployedc 6.247 2.7 0.022
Retiredc 5.268 1.9 0.006
Spouse (relationship to patient) 5.320 2.4 0.030
Care-related variables
Number of hours/day spent on caregiving tasks 0.382 0.2 0.024 0.389 0.2 0.010
Change in work situation 8.090 2.0 <0.001 8.356 2.0 <0.001
Patient variables
Receiving no cancer therapy 6.180 2.8 0.027
Edmonton Symptom Assessment System
Pain 0.721 0.3 0.035
Fatigue 0.962 0.3 0.005
Depression 1.085 0.4 0.003
Anxiety 0.911 0.3 0.007
Drowsiness 0.868 0.3 0.010
FACT-G
Physical well-being subscale score 0.439 0.2 0.007
Emotional well-being subscale score 0.497 0.2 0.006 0.712 0.2 <0.001
Functional well-being subscale score 0.367 0.2 0.017
Total score 0.162 0.1 0.005

FACT-G, Functional Assessment of Cancer Therapy—General.

a
Only variables significant on simple regression analysis at p ≤ 0.05 and were therefore included in the initial multiple regression analysis are shown. Other variables exam-
ined on simple regression analysis were caregiver disability or chronic illness, caregiver living with patient, caregiver ethnicity, caregiver education, caregiver income, care-
giver caring for others, receiving formal help, receiving informal help (no help was the referent), patient age, patient gender, patient awaiting new line of treatment, patient
Charlson comorbidity, patient nausea, appetite, well-being and dyspnoea.
b
B, unstandardized regression coefficient.
c
Not included in multiple regression analysis due to collinearity with age.

with cancer. In the SUPPORT study, where family
members of seriously ill patients hospitalized in the
USA were interviewed post-discharge, a family member
had to quit work or make another major life change to
care for the patient in 20% of cases [36]. In the current
study, 25% of caregivers underwent a change in work
situation (the majority working fewer hours, with a
minority quitting their job, taking leave or losing em-
ployment) after becoming a caregiver for the patient.
This is a substantial proportion, considering that close
to half of the caregivers in our sample were retired, and
the patients being cared for had a relatively good perfor-
mance status, were receiving ambulatory cancer care and
had a clinical prognosis of greater than 6 months.
Changes in work situation and number of hours spent
caregiving were independently associated with worse
caregiver mental well-being. Although, to our knowl-
edge, the association between changes in work situation
and caregiver QOL has not previously been reported,
studies in Turkey [37] and Norway [38] have found that
being unemployed was associated with worse caregiver
QOL. In another study, increased emotional distress
was reported by caregivers with lifestyle interference
and limitation in their ability to participate in valued
activities and interests, regardless of how much care they
were providing [39]. It is difficult in all of these studies,
including our own, to interpret the directionality of the
association between reducing work or other activities
and worse QOL. However, it is reasonable to conclude
that one goal of interventions for caregivers of
outpatients with advanced cancer should be to provide
some relief from long caregiving hours and to enable
continued engagement in meaningful activities or
employment if this is desired.
Independent of female sex, QOL was also worse for
caregivers who had other caregiving responsibilities in
addition to those for the patient. These findings are
similar to those of a study in cancer survivors [11],
and emblematic of a demographic and cultural circum-
stance, in which caregivers, who are most often
women, provide care for multiple dependents of differ-
ent generations [40]. Our finding that young age was
strongly associated with poor QOL and MH on simple
linear regression analysis, as in some other studies
[11,41], but not in multiple regression analyses,
suggests that the distress of those who are younger
could be related to the role strain of caring for multiple
dependents [42] or to the strains associated with
changes in work situation. In this vein, a previous study
found that employed caregivers of cancer survivors,
who were also taking care of children, reported greater
levels of caregiver stress [43].
Consistent with other studies [6,44,45], caregivers’
mental, but not physical health, was strongly associated
with caregiver QOL. Female sex was associated with
worse MH, consistent with other studies of cancer
caregivers [34,37,46]. Possible explanations include
that women might perceive themselves to have less
choice in the assumption of a caregiving role or set
higher standards for themselves as caregivers. In one

Copyright © 2011 John Wiley & Sons, Ltd. Psycho-Oncology 22: 403–410 (2013)
DOI: 10.1002/pon
Quality of life in caregivers of advanced cancer outpatients
study, male caregivers were more likely than female
caregivers to judge the caregiving experience as boost-
ing their self-esteem [46]; others have theorized that
greater perceived negative aspects of caregiving are as-
sociated with decreased MH [47,48]. There may also be
differences in the caregiving tasks assumed: female
caregivers tend to take on more personal care and
time-consuming tasks than male caregivers [49,50],
and the latter may receive greater recognition for
caregiving and less often have multiple dependents to
care for.
Strengths of our study include that we assessed an
understudied population, used a QOL measure specific
for caregivers and included patient and care-related
factors in our analysis. Limitations include that the
patient and caregiver population was generally well
educated, of relatively high income and of predomi-
nantly European ethnicity. Similar to other studies of
cancer caregivers [6,11,38,43], we included patients
with a variety of different cancers. There might be
patient-related factors that affect caregiver QOL, which
are specific to caring for patients with particular cancer
diagnoses, although tumour site group was not associ-
ated with caregiver QOL in this sample. The cross-
sectional nature of the data allows only for the
description of associations between variables and not
for definite statements about causality. Although the
percentage of variance in caregiver QOL related to
variables in the multiple regression model was approx-
imately 46%, it was lower at 19% for the MH model.
Our study did not include contextual factors, such as
quality of the caregiver–patient relationship and attach-
ment style, which have been shown to influence
caregiver MH in other studies [15,51]. Longitudinal
studies are needed in this population, as is research on
other factors that may influence caregiver MH, and
with caregivers of patients who have specific cancer
diagnoses.
In summary, we have evaluated factors predicting
caregiver QOL and MH among caregivers of outpa-
tients with advanced cancer. Although such caregivers
are caring for patients who are less ill than those in
hospice populations and may provide fewer hours of
actual hands-on care, they also have less access to hos-
pice or palliative care services and are more likely to
have other commitments in addition to their caregiving
responsibilities. Our results indicate that these
caregivers experience substantial distress, particularly
related to their MH, and that interventions at this early
palliative stage of illness are indicated for caregivers as
well as patients. The relationships of caregiver QOL
with patient physical well-being, and caregiver MH
with patient emotional well-being, indicate that early
palliative care interventions at the level of the patient
might also benefit the caregiver. Also, the influence
on caregiver QOL and MH of care-related factors, such
as caring for other dependents, the amount of care pro-
vided and change in work situation, supports a role for
interventions providing social assistance for caregivers,
even at this relatively early stage of advanced cancer.
Copyright © 2011 John Wiley & Sons, Ltd.
409
Acknowledgements
We extend our thanks to the staff of the medical oncology clinics
for their facilitation of this research. This research was funded in
part by the Canadian Cancer Society (grant nos. 017257 and
020509; C. Zimmermann) and by the Ontario Ministry of Health
and Long Term Care. The views expressed do not necessarily
reflect those of the funding agencies, which also had no role in
the study design, data collection, analysis and interpretation,
writing or decision to submit for publication. This study was
previously presented in part at the American Society for Clinical
Oncology Annual Meeting, 2011, Chicago, IL, USA, and at the
Canadian Association for Psychosocial Oncology Conference,
2011, Toronto, Canada.
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