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From the Ottawa Regional Cancer Centre and Division of Medical Oncology, University of Ottawa (Grunfeld), the Clinical Epidemiology Program, Ottawa Health Research Institute, Ottawa Hospital (Grunfeld, Coyle, Clinch, Viola, Coristine, Janz), the Institute of Palliative Care, Elizabeth Bruyère Health Centre (Viola) and the Vanier Institute of the Family (Glossop), Ottawa, Ont.; the Supportive Cancer Care Research Unit (Grunfeld, Whelan, Reyno, Willan), and the Hamilton Regional Cancer Centre and Division of Radiation Oncology (Whelan), McMaster University, and the Center for the Evaluation of Medicine, St. Joseph's Hospital (Willan), Hamilton, Ont.; the Division of Medical Oncology, Dalhousie University, Halifax, NS (Grunfeld, Reyno); and the Center for Outcomes and Policy Research and Department of Adult Oncology, Dana-Farber Cancer Institute, Harvard Medical School, Boston, Mass. (Earle)
Correspondence to: Eva Grunfeld, Cancer Care Nova Scotia, 1278 Tower Rd., Bethune Building, Halifax NS B3H 2Y9; Eva.Grunfeld{at}ccns.nshealth.ca
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.
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