Keywords
primary caregiver - cancer - quality of life - rural India
Introduction
Cancer is one of the most feared and dreaded chronic diseases across the world.[1] The patient spends more time at home as compared with the cancer center during this
prolonged treatment duration, often spanning from months to years.[2]
[3]
[4] In rural India, majority of the people still live in joint families. Diagnosis of
cancer in a family member enforces the family to put efforts collectively to help
the patient.[5] The socioeconomic conditions in rural India do not permit hiring a professional
caregiver, and hence, it becomes mandatory to take the role of “primary caregiver”
by spouse, sibling, or children.[6]
The primary caregiver is involved in monitoring the changes in the patient’s condition,
making decisions, providing hands-on care, making adjustments, accessing resources,
negotiating with health care system, emotional support, and often arranging funds
for the treatment.[7] Balancing the cancer patient’s care with his or her own personal routine is a challenging
task, physically and emotionally, to the primary caregiver.[8]
[9] Caregiving from historical times has been regarded as a meaningful experience but
the sequelae of the caregivers is often overlooked.[8] At Kolhapur Cancer Centre which is a rural cancer center in western India, we have
reported approximately 3,000 new cancer patients in a year with two out of three patients
presenting with either stage III or stage IV.[10] The Caregiver Quality of Life Index—Cancer (CQOL-C) scale is a measure of effect
of the illness of the cancer patient on the caregiver’s physical, emotional, social,
family, and other areas of functioning. The total score ranges from 0 to 140. The
higher the score, the worse is the CQOL-C.[11] There is paucity of data over the CQOL-C in rural India. Hence, we conducted this
study to understand the score of the primary caregivers and to find the significant
predictors affecting it, attending Kolhapur Cancer Centre, India.
Materials and Methods
This cross-sectional study was conducted among the primary caregivers of cancer patients
attending our center. Primary caregiver was an immediate relative who is assisting
the patient in most routine activities and is not a professional caregiver. The duration
of the study was from December 2019 to June 2020. The 114 caregivers were selected
by convenience sampling. All the primary caregivers were above 18 years of age. The
minimum duration between the date of cancer diagnosis and the interview of caregiver
was 3 months.
A pretested and predesigned questionnaire adapted from current literature was used
to interview the caregivers.[11] The questionnaire had two parts. The first part included the age, gender, site of
cancer, Eastern Cooperative Oncology Group (ECOG) status of the patient, relationship
with the caregiver, age of caregiver, gender of caregiver, presence of metastases,
and whether it was new or recurrent cancer case. The second part consisted of the
CQOL-C scale.[11] It had 35 QOL specific items each graded from 0 to 4 on Likert’s scale of which
“0” was “Not at all,” “1” was “A little bit,” “2” was “Somewhat,” “3” was “Quite a
bit,” and “4” was “Very much.” Question numbers 10, 12, 16, 22, 27, 28, and 34 were
reverse graded and analyzed. Question number 4 in the scale was omitted from the analysis
due to missing data. A total score was obtained by adding all the 34 items and final
score was considered for analysis.
The scale was translated to Marathi language by two independent translators and a
final approved version was used to collect the data. Data were collected by interviewing
the caregivers in person. A pilot study was conducted among 10 caregivers to finalize
the questionnaire. This pilot also revealed the standard deviation of total CQOL-C
score to be 16.23. Using this, with 95% confidence interval (CI) and 3.5% error, we
found the minimum sample size to be 86.[12] For our convenience, we included all 114 interviewed caregivers in the present study.
Statistical Analysis
The data were collected and compiled in Microsoft Excel. The data were analyzed using
statistical package of social sciences (SPSS) version 20.00. The data were coded and
analyzed using the guidelines published by the Measurement Instrument Database for
Social Sciences (MIDSS).[13] The qualitative variables were expressed in terms of percentages. Quantitative variables
were expressed in terms of mean and their 95% CIs. The total score of CQOL-C was categorized
based on the quartiles of our dataset into less than 30, 30 to 60, and more than 60
and then expressed in terms of percentages. To test the difference between 2 means,
Student’s t-test was used and more than 2 means, analysis of variance (ANOVA) was used. Univariate
analysis was done for all the factors and those factors which had p-value of <0.10 included in multiple linear regression analysis. Normality of the
data were tested using probability plots. Linearity of the factors was tested using
scatter diagrams. The independence was tested using Dubin–Watson test. After all these
assumptions were met, stepwise method of multiple linear regression analysis was used
to find the significant predictors which affect the CQOL-C. The best model fit was
determined and R
2 statistics was reported for the model. All of them were two-tailed analyses and the
significance was set at 0.05.
Ethics
Kolhapur Cancer Center institutional ethics committee (ECR-/523/INST/MH/2014/RR-17,
dated December 16, 2019) approval for the study was obtained. Written informed consent
was taken from all the participants with precautions to maintain the confidentiality.
The procedures followed were in accordance with the ethical standards of the responsible
committee on human experimentation and with Helsinki Declaration of 1964, as revised
in 2013.
Results
We included a total of 114 primary caregivers in the present study. The mean age of
the caregivers was 40.75 ± 11.45 years with male preponderance (male:female = 1.32:1).
Majority of the primary caregivers were related as children (50.86%) of the cancer
patients. The proportion of recurrent cancer and metastatic cancer at the time of
interview were 20.18 and 25.44%, respectively. More than half of the patients had
an ECOG performance score of 3 or 4 ([Table 1]).
Table 1
Demographic particulars of the participants
|
Demographic particulars
|
Frequency
|
Percentage
|
|
Age of the caregiver (y)
|
|
Abbreviation: ECOG, the Eastern Cooperative Oncology Group.
|
|
<30
|
19
|
16.67
|
|
31 to 40
|
34
|
29.82
|
|
41 to 50
|
30
|
26.32
|
|
51 to 60
|
22
|
19.30
|
|
>60
|
9
|
7.89
|
|
Gender of caregiver
|
|
Female
|
49
|
42.98
|
|
Male
|
65
|
57.02
|
|
Relation with patient
|
|
Children
|
58
|
50.88
|
|
Spouse
|
43
|
37.72
|
|
Sibling
|
9
|
7.89
|
|
Parents
|
4
|
3.51
|
|
Recurrence
|
|
Yes
|
23
|
20.18
|
|
No
|
91
|
79.82
|
|
Metastasis
|
|
Yes
|
29
|
25.44
|
|
No
|
85
|
74.56
|
|
ECOG
|
|
0–2
|
55
|
48.24
|
|
3–4
|
59
|
51.75
|
Head and neck (47.37%) was the most common site of cancer in the present study (
[Fig. 1]
).
Fig. 1 Distribution based on the site of the malignancy.
The mean total CQOL-C score was 44.15 ± 17.24 (CI: 41–47.3) with 71.05% of the caregivers
having moderate-to-severe hampering of their QOL ([Table 2]). The mean CQOL-C scores in caregivers of patients with and without recurrent cancer
were 58.24 (CI: 51.66–64.81) and 40.58 (CI: 37.35–43.80), respectively (p < 0.001). The mean CQOL-C scores in caregivers of patients with and without metastatic
cancer were 56.68 (CI: 51.13–62.22) and 39.80 (CI: 36.45–43.14), respectively (p < 0.001). The mean CQOL-C scores in caregivers of patients with hematological malignancies
was 60.03 (CI: 58.88–61.17) which was significantly higher compared with other sites
(p = 0.0257; [Table 3]). Stepwise linear regression analysis showed the presence of recurrence and metastases
in patients were significant predictors affecting the primary caregivers’ CQOL-C score
([Table 4]).
Table 2
Distribution of the total CQOL-C score
|
CQOL-C score
|
Frequency
|
Percentage
|
|
Abbreviations: CQOL-C, caregiver quality of life index—cancer; SD, standard deviation.
|
|
0–30 (mild)
|
33
|
28.95
|
|
30–60 (moderate)
|
67
|
58.77
|
|
60–136 (severe)
|
14
|
12.28
|
|
Total
|
114
|
100.00
|
|
Mean
|
44.15
|
|
|
SD
|
17.24
|
|
Table 3
Univariate analysis of the different parameters affecting CQOL-C
|
Parameters
|
CQOL-C
|
|
Mean
|
Confidence interval
|
|
Abbreviation: CQOL-C, caregiver quality of life index—cancer.
|
|
Age (y)
|
|
<40
|
43.34
|
39.08–47.59
|
|
>40
|
45.18
|
40.40–49.95
|
|
p-Value
|
0.5723
|
|
|
Gender
|
|
Female
|
45.96
|
42.02–49.91
|
|
Male
|
41.74
|
36.60–46.87
|
|
p-Value
|
0.2054
|
|
|
Relation with patient
|
|
Children
|
45.22
|
40.38–50.05
|
|
Spouse
|
42.61
|
37.69–47.52
|
|
Sibling
|
42.00
|
33.25–50.74
|
|
Parents
|
50.00
|
39.81–60.18
|
|
p-Value
|
0.7659
|
|
|
Recurrence
|
|
Yes
|
58.24
|
51.66–64.81
|
|
No
|
40.58
|
37.35–43.80
|
|
p-Value
|
<0.001
|
|
|
Metastasis
|
|
Yes
|
56.68
|
51.13–62.22
|
|
No
|
39.80
|
36.45–43.14
|
|
p-Value
|
<0.001
|
|
|
Site of cancer
|
|
Breast
|
40.28
|
32.44–48.11
|
|
Colorectal
|
40.10
|
33.44–46.75
|
|
Gynecology
|
55.00
|
42.57–67.42
|
|
Hematological
|
60.03
|
58.88–61.17
|
|
Head, face, and neck
|
42.26
|
37.79–46.73
|
|
Others
|
51.83
|
38.57–65.07
|
|
p-Value
|
0.0257
|
|
Table 4
Stepwise multiple linear regression analysis of the different parameters affecting
CQOL-C
|
Parameters
|
Unstandardized beta (95% CI)
|
Standard error
|
Standardized beta
|
t-Value
|
p-Value
|
|
Abbreviations: CI, confidence interval; CQOL-C, caregiver quality of life index—cancer.
Note: Adjusted R
2 = 0.224; Dubin–Watson = 2.21.
|
|
Constant
|
38.88 (35.55–42.22)
|
1.68
|
|
23.11
|
0.000
|
|
Metastasis (present/absent)
|
11.88 (4.34–19.38)
|
3.79
|
0.301
|
3.12
|
0.002
|
|
Recurrence (present/absent)
|
11.09 (2.93–19.26)
|
4.12
|
0.259
|
2.69
|
0.008
|
Discussion
Treating a cancer patient is the most common service offered in a cancer center with
little attention to the caregiver’s needs. The QOL of caregivers of cancer patients
is often a neglected part in routine practice. Improving the caregiver’s QOL has a
positive impact on the cancer patient’s care.[14]
[15] To highlight the importance of the QOL among the caregivers, we conducted a cross-sectional
study to analyze CQOL-C in the patients attending a rural cancer hospital in western
India.
There are numerous scales to quantify the caregiver’s QOL like “the Caregiver Reaction
Assessment,” “Brief Assessment Scale for Caregivers,” “Quality of Life in Life-Threatening
Illness—Family Carer Version,” “the Functional Assessment of Cancer Therapy Scale—General
Format,” “Measurement of Objective Burden and of Subjective Burden,” “the Caregiver
Strain Index,” “Bakas’ Caregiver Outcome Scale,” and “the Caregiver Quality of Life
Index—Cancer Scale.”[7] We chose the CQOL-C scale because it is a comprehensive assessment tool of physical,
negative emotions, social, spiritual, and financial dimension of the primary caregiver
of a cancer patient. The psychometric properties of the CQOL-C, such as internal consistency,
test–retest reliability, content validity, and convergent validity, are well defined.[7]
The studies conducted in South East Asia and Middle Eastern countries which do share
somewhat similar social norms and have reported higher CQOL-C score than the present
study.[16]
[17]
[18]
[19]
[20]
[21]
[22]
[23] Other studies conducted in the West revealed much higher CQOL-C as compared with
the South East Asian and Middle Eastern studies.[24]
[25]
[26]
[27] This reflects the role of societal norms and coping attitudes of caregivers of our
region in providing the appropriate care along with handling their QOL.
The various factors affecting cancer caregivers QOL were gender, marital status, educational
status, income status, insurance status, and relation of caregiver with patient reported
in various studies.[16]
[17]
[18] In the present study, the CQOL-C was significantly hampered in patients who had
recurrence and metastasis. Other factors, like age of the caregiver, gender, site
of cancer, and relationship of the caregiver with the patient, did not differ in their
CQOLC scores. The primary caregiver experiences the natural course of the cancer patient
from diagnosis, treatment initiation, treatment complications, treatment failure in
terms of recurrence, decision to discontinue treatment and opting out for alternative
treatment modalities, terminal illness, and death.[7] Caregivers with recurrent cancer cases have poor QOL which might be due the shattering
of the hope which was generated in the previous treatment modalities. The pain and
suffering of metastatic cancer patients adversely affects the negative emotions of
the primary caregiver.[28] Higher symptom burden of the cancer patients, more economic strain, role changes
during different modalities of treatment, loss of personal wages due to repeated visits
to hospital, and family function disruption are some important cues which explain
detrimental effects of CQOL-C among patients with metastatic disease at the time of
interview.[29]
[30]
[31]
[32]
Limitations and Strengths
Limitations and Strengths
Our study had some limitations. It was a single-center study with smaller sample size.
The follow-up of caregiver’s QOL in the different phases of treatment modality was
not addressed. There was no scope to intervene and assist the primary caregivers with
significantly worst QOL. The future studies could be built on this knowledge to intervene
in coping attitude of the primary caregiver. Nonetheless, this is one of the studies
which has been conducted on caregiver’s QOL in India and thus will add to the existing
literature on the topic.
Conclusion
Majority of the caregivers in our study have moderate-to-severe detrimental QOL. Recurrence
of cancer and metastatic cancer at presentation are the two significant factors affecting
CQOL-C found in this study. There is unmet need to cater the primary caregivers’ concerns
while we focus on treating cancer patients.
