Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers

Abstract

Background: The vital role played by family caregivers in supporting dying cancer patients is well recognized, but the burden and economic impact on caregivers is poorly understood. We prospectively examined the psychosocial, occupational and economic impact of caring for a person with a terminal illness. Methods: We studied 89 caregivers of women with advanced breast cancer receiving care at either the Ottawa or Hamilton regional cancer centres in Ontario. Patients were followed until their death or study completion at 3 years. Patients identified a principal caregiver to participate in the study. The Karnofsky Performance Status (KPS) index, the Medical Outcomes Study 36-item Short Form (SF-36), the Hospital Anxiety and Depression Scale, the Zarit Burden Inventory, FAMCARE and the Medical Outcomes Study Social Support Survey were administered during follow-up. Economic data were collected by means of a questionnaire administered by an interviewer. Assessments were conducted every 3 months during the palliative period (KPS score > 50) and every 2 weeks during the terminal period (KPS score ≤ 50). Results: Over half of the caregivers were male (55%) and the patient's spouse or partner (52%), with a mean age of 53 years. At the start of the palliative period, the caregivers' mean physical functioning score was better than the patients' (51.3 v. 35.1, 95% confidence interval [CI] 13.3-20.0); there were similar mean mental functioning scores (46.6 and 47.1 respectively); similar proportions were depressed (11% and 12%); and significantly more caregivers than patients were anxious (35% v. 19%, p = 0.009). More caregivers were depressed (30% v. 9%, p = 0.02) and had a higher level of perceived burden (26.2 v. 19.4, p = 0.02) at the start of the terminal period than at the start of the palliative period. Burden was the most important predictor of both anxiety and depression. Of employed caregivers, 69% reported some form of adverse impact on work. In the terminal period 77% reported missing work because of caregiving responsibilities. Prescription drugs were the most important component of financial burden. Interpretation: Caregivers' depression and perceived burden increase as patients' functional status declines. Strategies are needed to help reduce the psychosocial, occupational and economic burden associated with caregiving.

Increased risk of severe depression in male partners of women with breast cancer

“…28 It has been very well established that family caregivers in general and those in oncology in particular have a high risk of depression because they experience chronic stress that affects their physical state. 29,30 In keeping with the results of the current study, 2 case-control studies of the risk for depression in the partners of cancer patients that had small samples but relevant comparison groups also found a significantly increased risk in the exposed group. 12,13 Although the outcomes of these 2 studies are less marked than in the current study, the results support the hypothesis that a partner's cancer diagnosis has an effect on the spouse's risk for depression.…”

“…34 Two follow-up studies also demonstrated a significantly increased risk of depression among individuals whose partner had cancer in the terminal stage. 10,15 Thus, the effect of breast cancer in a partner on the man's risk for hospitalization with depression might depend both on the burden of late effects of the breast cancer and treatment and the overall prognosis. 15 Previously, we conducted a nationwide, populationbased study to determine whether cancer is followed by an increased risk of divorce or separation in cohabiting partners, which might explain the increased risk of severe depression.…”

“…9 In keeping with these findings, some of the previous studies on depression after a diagnosis of cancer in a spouse support an association, [10][11][12][13] whereas others have reported negative or null findings. [14][15][16] The majority of the studies had several limitations, including small sample sizes of spouses with cancer (<200 subjects), [10][11][12][13][14][15][16] and only a few small studies did include a relevant comparison group. 12,13 To the best of our knowledge, none of the previous studies regarding the risk of depression in partners of cancer patients used an objectively defined state of depression, diagnosed years before the study was conducted, and obtained from an administrative, population-based and nationwide database to reduce the risk for misclassification of the outcome under study as well as recall and information bias.…”

“…12,13 To the best of our knowledge, none of the previous studies regarding the risk of depression in partners of cancer patients used an objectively defined state of depression, diagnosed years before the study was conducted, and obtained from an administrative, population-based and nationwide database to reduce the risk for misclassification of the outcome under study as well as recall and information bias. [10][11][12][13][14][15][16] In a retrospective study with a cohort design, based on a nationwide sample and register-based information, we carefully examined the risk for hospitalization for an affective disorder among the male partners of women in whom breast cancer had been diagnosed. We focused purely on the affective spectrum because these disorders are severe, are commonly associated with stressful life events, and more systematically lead to a psychiatric diagnosis or hospitalization compared with other possibly stress-related disorders.…”

Evaluation of Quality of Life of Breast Cancer Patient Next-of-kin in Turkey

“…Previous literatures showed risk for depression, anxiety, improper sleep and diminish QoL can increase in cancer caregivers (Awadalla et al, 2007;Chang et al, 2007;Northouse et al, 2005) and also they frequently report changes in their usual activities, including household and family activities, social and community activities, personal care, and occupational activities because of caregiving responsibilities (Coristine et al, 2003;Grunfeld et al, 2004).…”