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Healthcare Burden of Rare Diseases: A Population-Based Study in Tuscany (Italy)
 
 
Article

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

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Fundación Canaria Instituto de Investigación Sanitaria de Canarias (FIISC), 38109 Santa Cruz de Tenerife, Spain
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Network for Research on Chronicity, Primary Care, and Health Promotion (RICAPPS), 28029 Madrid, Spain
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Research Network on Health Services in Chronic Diseases (REDISSEC), 28029 Madrid, Spain
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EuroQol Research Foundation, 3068 AV Rotterdam, The Netherlands
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Servicio de Evaluación del Servicio Canario de la Salud (SESCS), 38109 Santa Cruz de Tenerife, Spain
*
Author to whom correspondence should be addressed.
Academic Editors: Óscar Zurriaga and Clara Cavero-Carbonell
Int. J. Environ. Res. Public Health 2022, 19(13), 8208; https://doi.org/10.3390/ijerph19138208
Received: 12 April 2022 / Revised: 30 June 2022 / Accepted: 1 July 2022 / Published: 5 July 2022
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. View Full-Text
Keywords: health-related quality of life; EQ-5D-5L; caregivers; rare diseases; informal care; caregiver burden health-related quality of life; EQ-5D-5L; caregivers; rare diseases; informal care; caregiver burden
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MDPI and ACS Style

Valcárcel-Nazco, C.; Ramallo-Fariña, Y.; Linertová, R.; Ramos-Goñi, J.M.; García-Pérez, L.; Serrano-Aguilar, P. Health-Related Quality of Life and Perceived Burden of Informal Caregivers of Patients with Rare Diseases in Selected European Countries. Int. J. Environ. Res. Public Health 2022, 19, 8208. https://doi.org/10.3390/ijerph19138208

AMA Style

Valcárcel-Nazco C, Ramallo-Fariña Y, Linertová R, Ramos-Goñi JM, García-Pérez L, Serrano-Aguilar P. Health-Related Quality of Life and Perceived Burden of Informal Caregivers of Patients with Rare Diseases in Selected European Countries. International Journal of Environmental Research and Public Health. 2022; 19(13):8208. https://doi.org/10.3390/ijerph19138208

Chicago/Turabian Style

Valcárcel-Nazco, Cristina, Yolanda Ramallo-Fariña, Renata Linertová, Juan Manuel Ramos-Goñi, Lidia García-Pérez, and Pedro Serrano-Aguilar. 2022. "Health-Related Quality of Life and Perceived Burden of Informal Caregivers of Patients with Rare Diseases in Selected European Countries" International Journal of Environmental Research and Public Health 19, no. 13: 8208. https://doi.org/10.3390/ijerph19138208

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