Quality of life and mental health in caregivers of outpatients with advanced cancer Deepa Wadhwa 1 , Debika Burman 3,4 , Nadia Swami 3,4 , Gary Rodin 2,3,4 , Christopher Lo 2,3 and Camilla Zimmermann 1,2,3,4 * 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: 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 Abstract 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 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 evaluate whether and how these caregivers might 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. Psycho-Oncology Psycho-Oncology (2011) Published online in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/pon.2104