ArticleThe European journal of health economics : HEPAC : health economics in prevention and care2020
Quantifying the economic impact of caregiving for Duchenne muscular dystrophy (DMD) in Spain.
Article in The European journal of health economics : HEPAC : health economics in prevention and care, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
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Who cites it
13 citing papers in PubMed, 18 citations in OpenAlex.
- The Balancing Act of Paid Work and Caregiving in Duchenne Muscular Dystrophy (DMD): Results from a Cross-sectional Survey.Advances in therapy · 2026Article
- Systematic Literature Reviews of Health-State Utility Values, Costs, and Healthcare Resource Use in Duchenne Muscular Dystrophy.Journal of health economics and outcomes research · 2026Article
- Quality of Life and Financial Burden in Duchenne Muscular Dystrophy in Greece: Insights into Health System Performance in the Post-Pandemic Context.Healthcare (Basel, Switzerland) · 2025Article
- The Utilization, Reimbursement, and Cost of Targeted Therapies for Duchenne Muscular Dystrophy (DMD) in US Medicaid Programs: A Descriptive Trend Analysis from 2017 to 2022.Pharmaceutical medicine · 2025Article
- AppER: Design and Validation of a Mobile Application for Caregivers of Patients with Duchenne Muscular Dystrophy and Their Families in Spain and Latin America.Muscles (Basel, Switzerland) · 2025Article
- Financial Toxicity and Its Determinants in Individuals Living With Inherited and Acquired Neuromuscular Disorders: The BIND Study.Neurology · 2025Article
- Caregiver-Reported Economic Impacts of Pediatric Rare Diseases-A Scoping Review.Healthcare (Basel, Switzerland) · 2024Article
- Quality of life and caregiving burden associated with parenting a person with Duchenne/Becker muscular dystrophy in Poland.Orphanet journal of rare diseases · 2024Article
- Methods used to account for caregivers' sex and gender within studies examining the financial burden of caregivers of children and adolescents : Results from a scoping review.ClinicoEconomics and outcomes research : CEOR · 2024Article
- Needs of informal caregivers of people with a rare disease: a rapid review of the literature.BMJ open · 2022Review
- Interplay of disability, caregiver impact, and out-of-pocket expenditures in Duchenne muscular dystrophy: a cohort study.Journal of patient-reported outcomes · 2022Article
- Editorial: Muscular dystrophies: Current therapeutic advances to improve and restore muscle homeostasis.Frontiers in cell and developmental biology · 2022Article
- Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease.International journal of environmental research and public health · 2021Article
Corrections and comments
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Authors and funding
6 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
aimTo establish the potential economic burden in caregivers to patients with DMD and the potential causative factors.
methodCaregivers to patients with DMD were recruited through the DMD patients Register and questioned about several economic aspects using "ad-hoc" questionnaires.
resultsAll families, apart from one (97.2% n = 36), incurred in monthly medical costs (44% of the families more than 50 euros/month). 97.2% of the households considered looking after a patient of DMD as financially burdensome, and 80.5% of households declared to have suffered work changes, especially the mothers (job timetable-related mainly). The presence of obsessive-compulsive disorders (OCD) in patients was significantly associated with caregivers' high financial burden as these were six times more likely to have this perception OR = 6468 IC 95% (1056-39,601), p = 0.043. Also, when patients had learning difficulties, caregivers had up to six times more chances to incur in monthly expenditure for formal care OR = 6089 IC 95% (1112-33,342), p = 0.037.
interpretationCaregivers have relevant financial burden that might be conditioned by the clinical condition of the patient. WHAT THIS PAPER ADDS: Quantitative data about financial burden in DMD Spanish families providing informal care. Identification of the patient's main clinical issues associated with financial burden.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.