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Health-Related Quality of Life and Perceived Burden of Informal Caregivers of Patients with Rare Diseases in Selected European Countries

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  • Cristina Valcárcel-Nazco

    (Fundación Canaria Instituto de Investigación Sanitaria de Canarias (FIISC), 38109 Santa Cruz de Tenerife, Spain
    Network for Research on Chronicity, Primary Care, and Health Promotion (RICAPPS), 28029 Madrid, Spain
    Research Network on Health Services in Chronic Diseases (REDISSEC), 28029 Madrid, Spain)

  • Yolanda Ramallo-Fariña

    (Fundación Canaria Instituto de Investigación Sanitaria de Canarias (FIISC), 38109 Santa Cruz de Tenerife, Spain
    Network for Research on Chronicity, Primary Care, and Health Promotion (RICAPPS), 28029 Madrid, Spain
    Research Network on Health Services in Chronic Diseases (REDISSEC), 28029 Madrid, Spain)

  • Renata Linertová

    (Fundación Canaria Instituto de Investigación Sanitaria de Canarias (FIISC), 38109 Santa Cruz de Tenerife, Spain
    Network for Research on Chronicity, Primary Care, and Health Promotion (RICAPPS), 28029 Madrid, Spain
    Research Network on Health Services in Chronic Diseases (REDISSEC), 28029 Madrid, Spain)

  • Juan Manuel Ramos-Goñi

    (Research Network on Health Services in Chronic Diseases (REDISSEC), 28029 Madrid, Spain
    EuroQol Research Foundation, 3068 AV Rotterdam, The Netherlands)

  • Lidia García-Pérez

    (Fundación Canaria Instituto de Investigación Sanitaria de Canarias (FIISC), 38109 Santa Cruz de Tenerife, Spain
    Network for Research on Chronicity, Primary Care, and Health Promotion (RICAPPS), 28029 Madrid, Spain
    Research Network on Health Services in Chronic Diseases (REDISSEC), 28029 Madrid, Spain)

  • Pedro Serrano-Aguilar

    (Network for Research on Chronicity, Primary Care, and Health Promotion (RICAPPS), 28029 Madrid, Spain
    Research Network on Health Services in Chronic Diseases (REDISSEC), 28029 Madrid, Spain
    Servicio de Evaluación del Servicio Canario de la Salud (SESCS), 38109 Santa Cruz de Tenerife, Spain)

Abstract

Most of rare disease (RD) patients are assisted in their homes by their family as informal caregivers, causing a substantial burden among family members devoted to care. The role of informal caregivers has been associated with increased levels of stress, poor physical/mental health and impaired HRQOL. The present study assessed the impact on HRQOL and perceived burden of long-term informal caregiving, as well as the inter-relationships of individuals affected by different RD in six European countries, taking advantage of the data provided by the BURQOL-RD project (France, Germany, Italy, Spain, Sweden and UK). Correlation analysis was used to explore the relation between caregiver HRQOL and caregiver burden (Zarit Burden Interview). Multinomial logistic regression models were used to explore the role of explanatory variables on each domain of caregivers HRQOL measured by EQ-5D. Caregivers’ HRQOL is inversely correlated with burden of caring. Mobility dimension of EQ-5D was significantly associated with patients age, time devoted to care by secondary caregivers, patient gender and patient utility index. Patients’ age, burden scores and patient utility index significantly predict the capacity of caregivers to perform activities of daily living. Employed caregivers are less likely of reporting ‘slight problems’ in pain/discomfort dimensions than unemployed caregivers. The EQ-5D instrument is sensitive to measure differences in HRQOL between caregivers with different levels of burden of care.

Suggested Citation

  • Cristina Valcárcel-Nazco & Yolanda Ramallo-Fariña & Renata Linertová & Juan Manuel Ramos-Goñi & Lidia García-Pérez & Pedro Serrano-Aguilar, 2022. "Health-Related Quality of Life and Perceived Burden of Informal Caregivers of Patients with Rare Diseases in Selected European Countries," IJERPH, MDPI, vol. 19(13), pages 1-13, July.
  • Handle: RePEc:gam:jijerp:v:19:y:2022:i:13:p:8208-:d:855948
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    References listed on IDEAS

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    1. Norah L. Crossnohere & Ryan Fischer & Andrew Lloyd & Lisa A. Prosser & John F. P. Bridges, 2021. "Assessing the Appropriateness of the EQ-5D for Duchenne Muscular Dystrophy: A Patient-Centered Study," Medical Decision Making, , vol. 41(2), pages 209-221, February.
    2. Benjamin M. Craig & Wolfgang Greiner & Derek S. Brown & Bryce B. Reeve, 2016. "Valuation of Child Health‐Related Quality of Life in the United States," Health Economics, John Wiley & Sons, Ltd., vol. 25(6), pages 768-777, June.
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