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

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Abstract

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.

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Acknowledgments

The authors would like to acknowledge Errol J. Philip, PhD, who provided support with literature review and manuscript editing as a paid consultant to Kantar Health, with funding from Bristol-Myers Squibb, Inc.

Disclosures

Amir Goren and Marco daCosta DiBonaventura are employees of Kantar Health, a global healthcare consulting and research organization, and contributed to the study design, analysis, and reporting with funding from Bristol-Myers Squibb. Isabelle Gilloteau and Michael Lees are paid employees of Bristol-Myers Squibb, a pharmaceutical company whose mission to provide innovative medicines (helping patients prevail over serious diseases such as cancer) informed the current study and its aim of exploring different dimensions of cancer-related burden and the broader community affected by the disease. A portion of this work was presented at the 2012 Congress of the European Society for Medical Oncology (ESMO) in Vienna, Austria. Bristol-Myers Squibb, Inc. provided funding for the execution, analysis, reporting, and publication of the current study.

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Correspondence to Amir Goren.

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Goren, A., Gilloteau, I., Lees, M. et al. Quantifying the burden of informal caregiving for patients with cancer in Europe. Support Care Cancer 22, 1637–1646 (2014). https://doi.org/10.1007/s00520-014-2122-6

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  • DOI: https://doi.org/10.1007/s00520-014-2122-6

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