Tim A Kanters1, Ans T van der Ploeg, Werner B F Brouwer, Leona Hakkaart. 1. Institute for Medical Technology Assessment, Department of Health Policy & Management, Erasmus University Rotterdam, Burgemeester Oudlaan 50, P.O. Box 1738, 3000 DR Rotterdam, The Netherlands; Center for Lysosomal and Metabolic Diseases, Erasmus Medical Center, Dr. Molewaterplein 60, 3015 GJ, Rotterdam, The Netherlands. Electronic address: kanters@bmg.eur.nl.
Abstract
BACKGROUND: Patients with Pompe disease, a rare progressive neuromuscular disorder, receive a considerable amount of informal care. In this study, we examined the impact of providing informal care to patients with Pompe disease. METHODS: Caregivers were administered various instruments, which measured the (impact of) informal care in the context of Pompe disease. Patients' quality of life and use of a wheelchair and respiratory support were used to investigate the impact of disease severity on the burden and well-being of caregivers. RESULTS: Of all Dutch patients with Pompe disease, 88 indicated to receive informal care, of which 67 (76%; 67 caregivers) participated in this study. On average, caregivers provided 17.7 hours of informal care per week. Higher disease burden was associated with more hours of informal care. Caregivers experienced burden due to caregiving. Half of the informal caregivers reported mental health problems and problems with daily activities due to providing informal care. Physical health problems occurred in 40% of informal caregivers. Caregiver burden was higher for patients with a lower quality of life and for wheelchair dependent patients. Burden was not associated with respiratory support. Caregivers reported deriving personal fulfillment from caregiving and, on average, would become unhappier if someone else were to take over their care activities. CONCLUSIONS: The provision of informal care causes burden to caregivers. However, caregivers also value caring for their loved ones themselves. The study may help physicians and policy makers to design measures to support informal caregivers.
BACKGROUND:Patients with Pompe disease, a rare progressive neuromuscular disorder, receive a considerable amount of informal care. In this study, we examined the impact of providing informal care to patients with Pompe disease. METHODS: Caregivers were administered various instruments, which measured the (impact of) informal care in the context of Pompe disease. Patients' quality of life and use of a wheelchair and respiratory support were used to investigate the impact of disease severity on the burden and well-being of caregivers. RESULTS: Of all Dutch patients with Pompe disease, 88 indicated to receive informal care, of which 67 (76%; 67 caregivers) participated in this study. On average, caregivers provided 17.7 hours of informal care per week. Higher disease burden was associated with more hours of informal care. Caregivers experienced burden due to caregiving. Half of the informal caregivers reported mental health problems and problems with daily activities due to providing informal care. Physical health problems occurred in 40% of informal caregivers. Caregiver burden was higher for patients with a lower quality of life and for wheelchair dependent patients. Burden was not associated with respiratory support. Caregivers reported deriving personal fulfillment from caregiving and, on average, would become unhappier if someone else were to take over their care activities. CONCLUSIONS: The provision of informal care causes burden to caregivers. However, caregivers also value caring for their loved ones themselves. The study may help physicians and policy makers to design measures to support informal caregivers.
Authors: Cristina Valcárcel-Nazco; Yolanda Ramallo-Fariña; Renata Linertová; Juan Manuel Ramos-Goñi; Lidia García-Pérez; Pedro Serrano-Aguilar Journal: Int J Environ Res Public Health Date: 2022-07-05 Impact factor: 4.614
Authors: Alicia Aurora Rodríguez; Imanol Amayra; Juan Francisco López-Paz; Oscar Martínez; Maitane García; Mónika Salgueiro; Mohammad Al-Rashaida; Paula María Luna; Paula Pérez-Nuñez; Nicole Passi; Irune García; Javiera Ortega Journal: Int J Environ Res Public Health Date: 2022-09-28 Impact factor: 4.614