Quantifying the burden of informal caregiving for patients with cancer in Europe

• Published in: Supportive care in cancer Vol. 22; no. 6; pp. 1637 - 1646
• Main Authors: Goren, Amir, Gilloteau, Isabelle, Lees, Michael, daCosta DiBonaventura, Marco
• Format: Journal Article
• Language: English
• Published: Berlin/Heidelberg Springer Berlin Heidelberg 01.06.2014; Springer; Springer Nature B.V
• Subjects: Adolescent; Adult; Aged; Analysis; Cancer; Cancer patients; Care and treatment; Caregivers; Caregivers - psychology; Caregivers - statistics & numerical data; Comorbidity; Cost of Illness; Delivery of Health Care - utilization; Depression, Mental; Emergency medical services; Europe - epidemiology; Female; Health aspects; Health Behavior; Health Surveys; Humans; Male; Medicine; Medicine & Public Health; Middle Aged; Neoplasms - epidemiology; Neoplasms - psychology; Neoplasms - therapy; Nursing; Nursing Research; Oncology; Original Article; Pain Medicine; Quality of Life; Rehabilitation Medicine; Socioeconomic Factors; Stress, Physiological; Stress, Psychological - epidemiology; Surveys; Young Adult; Europe; Productivity; Health-related quality of life; Caregiving; Cancer; Resource use
• ISSN: 0941-4355; 1433-7339
• DOI: 10.1007/s00520-014-2122-6

Purpose Informal caregivers for patients with cancer provide critical emotional and instrumental support, but this role can cause substantial burden. This study expands our understanding of cancer-related caregiving burden in Europe. Methods Caregivers ( n  = 1,713) for patients with cancer and non-caregivers ( n  = 103,868) were identified through the 2010 and 2011 European Union National Health and Wellness Survey, administered via the Internet to adult populations in France, Germany, Italy, Spain, and the United Kingdom. Respondents completed measures of sociodemographics and health behaviors, health-related quality of life (using SF-12v2), work productivity and activity impairment (using WPAI), healthcare resource use (emergency room visits, hospitalizations, and traditional provider visits), and reported diagnosis of stress-related comorbidities (depression, anxiety, insomnia, headache, migraine, and gastrointestinal problems). Two-sided tests of means or proportions compared caregivers against non-caregivers. Multivariable regression models, comparing caregivers for patients with any cancer vs. non-caregivers on all health outcomes, adjusted for covariates (age, sex, college, income, marital status, employment, body mass index, alcohol, smoking, and Charlson comorbidity index). Results Caregivers for patients with cancer vs. non-caregivers reported significant ( P  < 0.05) impairment across all health outcomes, even after adjusting for several confounds (e.g., 3.26-point lower mental health status, 0.043-point lower health utilities, 1.46 times as much work impairment, and 1.97 times the odds of anxiety). Conclusions Caregivers for patients with cancer experienced significant impairments. These findings reinforce the need for enhancing our understanding of the caregiving experience and developing supportive and personalized multicomponent interventions for caregivers, given their pivotal role in providing support for patients.