Depression in caregivers of patients with breast cancer: A cross-sectional study from a cancer research center in South India.

CONTEXT: Existing literature suggests an alarming rate of depression in cancer caregivers, which is comparable to or even higher than in patients themselves. There are no studies on depression among caregivers of breast cancer from India. AIMS: The aim is to study the prevalence and determinants of depression in caregivers of breast cancer. SETTINGS AND
DESIGN: This is a cross-sectional study of 384 patient-caregiver dyads at a cancer research center in South India.
MATERIALS AND METHODS: Based on the International Classification of Diseases, 10th Revision Diagnostic Criteria for Research depression was diagnosed, and the severity of depression was assessed using the Hamilton rating scale for depression. A semi-structured pro forma was used to collect the clinical data under patient, caregivers, and care characteristics.
RESULTS: The prevalence of depression in caregivers was 52.5%. Among them, 35% had mild depression, 16% had moderate depression, and 2% had severe depression. Spousal caregivers, those who resided with the patient, those providing financial support and those with noncaring domestic responsibilities appeared as vulnerable determinants in univariate analysis. However, multivariate analysis did not support the same.
CONCLUSION: Depression is common among caregivers of patients with breast cancer. There is a need for focused interventions for this group, which may improve the outcome of the patient as well.

INTRODUCTION

Cancer remains an important cause of death and increasingly, a chronic illness, with its baggage of burden. Pronouncing the word cancer is related to a life-threatening situation in spite of the increasing awareness of medical knowledge in India.[12] The diagnosis of cancer evokes significantly greater emotional reaction than the diagnosis of any other disease, regardless of mortality rate, or treatment options.[3] The gap of knowledge, fear, and uncertainty regarding cancer is attributable to this dilemma.[1]

In India, the total cancer cases of 979,786 in 2010 are predicted to rise to 1.1 million by 2020.[4] The diagnosis of cancer affects not only the patients but also the principal caregivers who are involved in the care of the patient.[5] Studies have shown that depression is greater in cancer caregivers than in the general population[67] and caring for patients with cancer may increase the risk for, sleep disruption, depression, anxiety, and finally diminish the quality of life (QoL).[89101112] Ramirez reported a high prevalence of depression and anxiety in cancer caregivers (39% and 46%, respectively).[13] Studies have shown the efficacy of psychological interventions such as cognitive behavioral therapy (CBT), psycho educative and supportive therapies, family therapies or group therapies among cancer caregivers.[14] Lack of medical attention and services to caregivers is a gap in health care.[15]

Breast cancer is the most commonly diagnosed malignancy in women worldwide (22%).[16] In India, breast cancer ranks second to cervical cancer (18.5% of cases).[16] The age-standardized incidence rate of breast cancer in India varies from 9 to 32/100,000 women.[16] Advances in screening and biomedical treatment modalities have changed the face of breast cancer from a terminal illness to a chronic illness with the bio-psycho-social features.[15] In our society, the principal caregivers, commonly close relatives are the backbone of support and care for the patient.[17] Western society and the Asian Society are markedly different in the structure, familial organization, and the social support from Government and other agencies. According to data from a study in Karnataka, the majority of principal caregivers had to give up work permanently, leading to a significant dent in their personal finances, in situ ations of cancer in their loved ones.[18] The studies of psychological distress of principal caregivers are mostly from outside India, and family caregivers of patients with cancer received limited attention in published literature in India.[17]

The present study is designed to assess depression and its determinants in principal caregivers of patients with breast cancer in India. This might aid the development of focused interventions for this group, which may improve the outcome of the patient as well.

Definitions

Patient

Those who are diagnosed to have breast cancer,[1920] of all stages undergoing active anticancer treatments such as surgery, chemotherapy, or radiotherapy after 1 month of diagnosis except who are terminally ill.

Principal caregiver

Principal caregiver broadly defined as the patient's family member identified by the patient as her primary source of emotional, financial, and physical support during the treatment of cancer. Professional or paid caregivers were excluded.

Aim

To study the prevalence and determinants of depression in principal caregivers of patients with breast cancer.

Objectives

To assess the prevalence of depression of principal caregivers of patients with cancer

To find out the determinants of depression of principal caregivers of patients with cancer.

MATERIALS AND METHODS

This is a cross-sectional study conducted at a tertiary care Cancer hospital and research center attached to Amala Institute of Medical Sciences, Thrissur, Kerala, India. The Cancer Center is functioning with a multidisciplinary team spanning across medical, surgical, radiation, and psycho-oncology specialists with an average of 1500 cancer patients registering per month. At the moment, there is no caregiver oriented services at this center. The study was approved by the Institute Ethics Committee.

The study population included the principal caregivers of age 18 years and above, who consented to participate in the study. Those reporting psychiatric disorders were excluded from the study. The sample size was calculated as 384 with 95% confidence interval and precision of 5%, based on a pilot study conducted in 20 principal caregivers where the prevalence of depressive symptoms was 51%. The investigator, who was a final year postgraduate trainee in psychiatry interviewed the patient to identify the principal caregiver and later interviewed the first 384 consenting principal caregivers of consecutive patients admitted in the ward.

A clinical interview based on the symptom checklist of diagnostic criteria for research for depression, International Classification of Diseases, 10th Revision (ICD-10) was used to diagnose depression. The Hamilton rating scale for depression (HAM-D) was used to assess the severity of depressive symptoms. Appropriate referral to the psychiatric services was made for those who were diagnosed to have depression and other psychiatric morbidities. The sociodemographic and clinical data were collected using a structured pro forma.

The materials

Sociodemographic and clinical pro forma

This was a modified version of the pro forma designed by Nijboer et al. based on a conceptual research model[21] for studying the care giver's mental health, the data were broadly grouped as patient characteristics, caregivers’ characteristics, caregivers’ experiences, and care characteristics

Symptom checklist for Diagnostic criteria for research for depression based on the ICD-10[22]

HAM-D.[23] One of the most commonly used scales for rating depression in medical research, since its development in 1960 by Dr. Max Hamilton of the University of Leeds, England. HAM-D lists 21 items spanning the spectrum of depressive symptoms. The scoring is based on the first 17. The scale rates the severity of various depressive symptoms. Eight items are scored on a 5-point scale, ranging from 0 = not present to 4 = severe. Based on the total score, the severity of symptomatology can be graded from mild-to-severe.

RESULTS

The statistical analysis was performed using R commander. Tables 1 and 2 present descriptive characteristics of the 384 patient and caregiver dyad who participated in the study.

Table 1

Mean age

Age	n	Minimum age (years)	Maximum age (years)	Mean age (SD)
Patient	384	33	77	50.83 (10.74)
Care giver	384	20	75	47.25 (15.16)

SD – Standard deviation

Table 2

Patient characteristics

Characteristics	Definition	n (%)
Stage	Stage 1	51 (13.0)
	Stage 2	211 (55.0)
	Stage 3	95 (25.0)
	Stage 4	27 (7.0)
Treatment	Surgery	326 (85.0)
	Chemotherapy	326 (85.0)
	Radiotherapy	125 (32.5)
Co-morbid medical conditions of patients	Atherosclerotic illness	77 (20.0)
	Other chronic illness	30 (8.0)
	None	278 (72.5)

The age group of the patient population ranged from 33 to 77 years (mean age: 51 years, standard deviation [SD]: 10.74). More than half of the patients were in stage 2 (early cancer) as per TNM staging of breast cancer (n = 211 [55%]). The majority had undergone surgery and chemotherapy (n = 326 [85%]). One-third of patients (n = 125 [33%]) had received radiotherapy. Three-quarters of the sample (n = 278, [73%]) had no comorbid medical conditions.

Mean age of principal caregivers caring the patients was 47 years, ranging from 20 to 75 years with a SD of 15.16.

Women (n = 221 [57.5%]) outnumbered men in caregiving. Less than half of the caregivers were educated above the high school level (n = 173 [45%]). Principal caregiver's relationship with the patient, more than one-third of relatives (n = 124 [32%]) were spousal caregivers. More than half of the principal caregivers were living with the patients (n = 231 [60%]). Majority of principal caregivers did not have any physical illness (n = 318 [83%]).

Only 57 (15%) reported a severe disruption to their schedule at home because of the caring process; however, 173 (45%) of the caregivers felt minimal disruption. Three-quarters of the patient-relative dyad described their family support as poor or minimal (n = 288 [75%]). Majority did not have domestic help at home (n = 269 [70%]). Most relatives were well informed of the treatment plan (n = 376 [98%]). None of the participants in the study was engaged in a support group outside the hospital.

Regarding care characteristics, more than half of the patients relative spent above 10 h per day in caregiving (n = 259 [67%]). Only one-fifth of the patients required relative's assistance for their personal care (n = 69 [18%]). However, half of the principal caregivers had to do domestic chores at home along with caregiving (n = 192 [50%]). Exact half of the principal caregivers also provided financial support to the treatment (n = 192 [50%]). Majority of the patients resided within 25 km from the hospital.

Depression

Depression was diagnosed based on ICD 10 Diagnostic Criteria for Research (DCR) and severity of depression was assessed on the basis of scoring on HAM-D [Table 3]. Majority of the principal caregivers had depression (n = 202 [52.5%]). Among those who had depression, majority had mild depression (n = 134 [35%]) and sixty-one (16%) had moderate depression. Only a small proportion of them had severe depression (n = 7 [2%]).

Table 3

Prevalence of depression based on ICD-10 DCR and severity based on HAM-D score

Total care givers	No depression	Depression present
384	182 (47.5%)	202 (52.5%): Severity of depression  Mild (HAMD score: 8-13): 134 (35%)  Moderate (HAMD score: 14-18): 61 (16%)  Severe (HAMD score: 19-22): 7 (2%)

HAM-D – Hamilton rating scale for depression

The Chi-square test and Fisher's exact test were applied as univariate analysis for finding the association between various demographic factors and depressive symptoms [Table 4]. Both the age and gender of the caregiver were significantly associated with caregiver depressive symptoms (P < 0.001). Spousal relatives, men in this study, were significantly more depressed than nonspousal relatives (P < 0.001). Relation of the relative and the patient had significance (P = 0.004). Those living together with the patient had a significantly higher association (P = 0.003). Caregivers having to do domestic chores, in addition to caring, were more depressed to a level of statistical significance than others (P = 0.004). Similarly, those having to fund the care were more depressed (P < 0.001) and those who accompanied in transporting the patient to the hospital (P = 0.015) were statistically significant. Caregivers who had to spend >10 h for caring also had statistically significant association (P = 0.005).

Table 4

Association of depression with determinants

Variable	Division	Depression (n)		χ2/Fisher exact test	P
		No	Yes
Age of care giver	Below 47	154	29	-	<0.001*
	47 or above	48	77
Gender of care giver	Male	19	144	19.67	<0.001*
	Female	183	38
Education of care giver	High school	96	115	0.97	0.32
	Above high school	106	67
Job of care giver	Unskilled	144	86		0.23
	Skilled	19	48
	Semi professional	29	48
	Professional	10	0
Relation with patient	Spouse	9	115	15.5	<0.001*
	Nonspouse	192	68
Living with patient	Yes	77	154	8.84	0.003*
	No	125	28
Family situation	Nuclear family	86	154	2.63	0.11
	Joint family	115	29
Domestic help given by care giver	Yes	58	134	8.12	0.004*
	No	144	48
Financial help by care giver	Yes	37	155	16.94	<0.001*
	No	163	29
Transportation by care giver	Yes	96	154	5.87	0.015*
	No	105	29
Hours of care per day	Below 10 h	106	19	7.96	0.005*
	10 h or above	96	163

*P<0.05, considered as statistically significant association

Age of the patient, stage of the illness, type of treatment received, and comorbidity of the patient did not have any significant association with principal caregivers depression (P > 0.05). Relative's education and the job did not have any association. Other care responsibilities, having a physical illness in the carer did not have any significant association (P > 0.05). Disruption of the daily schedule, the insurance status of the patient, perceived family support, however, did not have any association. Association with the level of illness information, involvement in support group, sharing of the experience of caregiving could not be assessed as our study was not powered to find them. The distance from the hospital and frequency of hospital visits, however, is not found to have any significance.

Those variables which were found to be significant in univariate analysis were included in the multiple logistic regression model. Table 5 shows the estimated odds ratio of variables which were significant in univariate analysis, included in multiple logistic regression. However, their significance was lost in multivariate analysis (P > 0.05).

Table 5

Multiple logistic regression

Variables	OR	95% CI	P
Living with the patient	0.43	0.06, 3.24	0.42
Financial help by care giver	0.09	0.005, 1.16	0.10
Transportation by caregiver	1.18	0.09, 14.43	0.89
Hours of care per day	2.26	0.24, 21.04	0.48

OR – Odds ratio; CI – Confidence interval

DISCUSSION

Depression in principal caregivers affects their QoL as well as caregiving to a significant extent. Existing data indicate a higher level of depression in caregivers than in the general population or even in cancer patients.[24] There are effective ways to treat depression.

More than half of the carers had depressive symptoms on the HAM-D scale, which is comparable with international findings.[14] Depressive symptoms cut across all ages, leaving no age group special. This may also indicate a lack of confounding the effect of varying age of the carer. A few previous studies have demonstrated more depression in younger age group.[24]

Although the statistical significance was lost on multivariate analysis, the male gender, in this study the spousal caregiver is more predisposed to develop depressive symptoms in univariate analysis. There are enormous data in the literature supporting the same. The changing societal structure of India, with the rise of nuclear families, is in concordance with this finding.[25] In addition to the direct caring responsibility, people may have various other domestic chores to juggle with. This may clearly predispose to higher burden and a higher risk of depressive symptoms among resident carers.[262728] Our finding supported this observation. Principal caregivers who were bound to do the household domestic chores also determined the development of depression in them. Lack of physical support as a predictor for depression in caregivers has been documented in western literature.[528] The resident principal caregivers were more prone to develop depression in our study. This is in concordance with available literature.[2127]

The financial burden is another predisposing factor leading to caregiver depression. In our study, there was a strong statistical association between the financial burden of the principal caregivers and their depression in univariate analysis. International studies have also made similar outcomes.[2129]

Our study did not reveal any association with the intensity of care in terms of duration of care. A study found out that depression in carer is increased with the duration of care required.[30]

There was no association with the stage of cancer and depression in carer. This could be partly because we excluded the terminally ill patients. During the stable phase of the illness (like the study sample), caregiver depression did not appear to be affected by the stage of the disease. It is predictable that the level of depression is likely to be higher in the initial phases and terminal phases of cancer.[3132]

This study could not explore the association between caregiver depression and the socioeconomic status, which appears to be a significant factor according to other literature.[7]

Our study was not powered to find out the significance of the educational status of caregiver, as our majority caregivers were with high school education. High educational level of carer may predispose them to depression compared to those with a low level of education.[24] This may be due to the perception that caregiving is less rewarding, and providing less self-esteem compared with more intellectually stimulating professional activities.[2433] The role of profession or employment status in predicting depressive symptomatology of the carer appeared low in the stable phase of the disease.

Depression affects QoL, caregiving and hence, the outcome of cancer. Depression is treatable. Role of medications, CBT, and other supportive approaches are documented in treating depression in principal caregivers of cancer patients.[14]

Cancer specialists in treatment team need to be aware of the need for psychological assessment of principal caregivers. They should be trained to pick up depressive symptoms and its associated risk factors at the earliest and should be offered services to the needful. This approach ultimately improves the outcome of cancer treatment.

There are practical issues such as financial and domestic help is needed for the carer. We are aware that government has few provisions; however, it is the need of the hour for philanthropic actions in this area that has to be encouraged.

Limitations

This was only a cross-sectional study. A study with multiple assessments over a period of time or having a control group might give more valid data. A community study could also give more valid data. We did not use a standard structured diagnostic interview and did not make a note of other psychiatric comorbidities we found out using ICD 10 DCR. We could not include all confounding variables for depression in caregivers including physical illness in the caregiver. This study is a hospital-based study, generalizability may be affected.

CONCLUSION

Principal care givers are vulnerable for depressive disorders. In our study, we found that the majority of caregivers to people with breast cancer report depressive symptoms, despite patients being in a stable phase of illness, with a low perceived financial burden. Spousal caregivers, those who are resident with the patient, those providing the financial support to the care and with noncaring domestic responsibilities appear most vulnerable according to this study [Table 4]. However, confounding variables would necessitate further targeted research and service provision.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.