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The multidimensional burden of informal caregivers in primary malignant brain tumor

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Abstract

Purpose

Informal caregivers (ICs) provide care and improve the quality of life of patients with malignant brain tumor. We analyze the impact of their involvement on themselves from a triple perspective.

Methods

Home-dwelling patients with primary malignant brain tumor underwent a medical examination. ICs burden was evaluated by a self-administered postal questionnaire. Objective burden (Informal Care Time, ICT), subjective burden (Zarit Burden Inventory, ZBI), and financial burden (valuation of lost earnings using the Replacement and Opportunity Cost Methods, RCM, OCM) were evaluated.

Results

ICs (N = 84) were principally women (87 %) and spouses (64 %), of mean age 55 years, who assisted patients of mean age 53 years and with a mean KPS score of 61 (range = 30–90, med = 60). Subjective burden was moderate (mean ZBI = 30). Objective burden was high (mean ICT = 11.7 h/day), mostly consisting of supervision time. Higher subjective and objective burden were associated with poorer functional status (KPS) but not with a higher level of cognitive disorders in multivariate analyses. Other independent associated factors were bladder dysfunction and co-residency for objective burden and working and a poor social network for subjective burden. The 56 working ICs made work arrangements (75 %) that impacted their wages (36 %) and careers (30 %). Financial burden due to uncompensated caregiving hours for Activities of Daily Living had a mean monetary value from Є677(RCM) to Є1683(OCM) per month (i.e., ranging from Є8124 to Є20196 per year).

Conclusions

IC burden is multidimensional. Greater provision of formal care, more IC support programs, and economic interventions targeting IC employment and finances are needed.

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Acknowledgments

The authors thank the Association pour la Recherche sur les Tumeurs Cérébrales (ARTC) and Bérengère Davin for their support during the study. The first author received research grants from the French Society of Physical Medicine and Rehabilitation (SOFMER, 2012), the Fondation des “Gueules Cassées” (2012), the Caisse Nationale de Solidarité pour l’Autonomie (CNSA, 2013), and the Fondation de France (2014) for the project “Informal care and Neurodisability.” These funding sources were not involved in the study design, the collection, analysis, or interpretation of data, or in the writing of the article.

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Authors and Affiliations

  1. Department of Neuro-Rehabilitation, Pitié-Salpêtrière Hospital, Paris, France

    Eléonore Bayen

  2. Health Economics Department LEDa-LEGOS, PSL University Paris-Dauphine, Paris, France

    Eléonore Bayen, Myrtille Prouté & Marie-Eve Joël

  3. Department of Neuro-Oncology, Pitié-Salpêtrière Hospital, Paris, France

    Florence Laigle-Donadey, Khê Hoang-Xuan & Jean-Yves Delattre

  4. Sorbonne University UPMC Paris 06, CRICM, Paris, France

    Khê Hoang-Xuan & Jean-Yves Delattre

  5. INSERM U1127, Paris, France

    Khê Hoang-Xuan & Jean-Yves Delattre

  6. CNRS, UMR 7225, Paris, France

    Khê Hoang-Xuan & Jean-Yves Delattre

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  1. Eléonore Bayen
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  2. Florence Laigle-Donadey
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  5. Marie-Eve Joël
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  6. Jean-Yves Delattre
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Correspondence to Eléonore Bayen.

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All procedures performed in the present study involving human participants were in accordance with the ethical standards of the national research committee and with the 1964 Helsinki declaration and its later amendments.

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The authors declare that there is no conflict of interest.

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Bayen, E., Laigle-Donadey, F., Prouté, M. et al. The multidimensional burden of informal caregivers in primary malignant brain tumor. Support Care Cancer 25, 245–253 (2017). https://doi.org/10.1007/s00520-016-3397-6

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  • DOI: https://doi.org/10.1007/s00520-016-3397-6

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