ArticleOrphanet journal of rare diseases2024
Quality of life and caregiving burden associated with parenting a person with Duchenne/Becker muscular dystrophy in Poland.
Article in Orphanet journal of rare diseases, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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Who cites it
11 citing papers in PubMed.
- Physical Activity and Quality of Life Among Caregivers of Children with Duchenne Muscular Dystrophy.Healthcare (Basel, Switzerland) · 2026Article
- Article
- Qualitative study on body image disturbance in young and middle-aged women with breast cancer in China.BMJ open · 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
- Counting the Cost: The Hidden Financial Realities of Neuromuscular Disease Through Patient and Family Perspectives.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- The Psychological Burden of Neuromuscular Diseases: A Narrative Review of Anxiety, Depression, Coping, and Quality of Life.Muscles (Basel, Switzerland) · 2025Review
- 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
- Parents as First Responders: Experiences of Emergency Care in Children with Nemaline Myopathy: A Qualitative Study.Nursing reports (Pavia, Italy) · 2025Article
- Quality of Life Among Family Caregivers of Individuals With Rare Diseases: Web-Based Population Study on the Validity and Reliability of the Polish World Health Organization Quality of Life-BREF Questionnaire.JMIR public health and surveillance · 2025Article
- The caregiver burden of idiopathic inflammatory myopathies.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Quality of Life, Caregiver Burden, and Symptoms of Depression and Anxiety in Parents of Children with Spinal Muscular Atrophy: A Comparison with Healthy Controls.Medicina (Kaunas, Lithuania) · 2025Article
Corrections and comments
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Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundDuchenne and Becker muscular dystrophies (DBMD) are rare progressive, X-linked diseases of muscle wasting characterised by the early onset and prognosis of premature death. The aim of this study was to evaluate the impact of providing care for a person with DBMD on caregivers' quality of life, perceived burden and financial well-being.
results202 Polish caregivers of a person with DBMD were included and completed a self-administered, computer-assisted online survey. Results show that DBMD affects the quality of life of caregivers who score significantly lower than the national average in every domain: 85.1% of DBMD caregivers scored below the national average in the physical health domain; in the environmental domain 83.7%; in the social relationships domain 82.2%; and in the psychological domain 72.3%. It also demonstrates that DBMD is a source of severe burden (mean score of 35.3). Finally, we report that while some dimensions of respondents' quality of life and perceived burden were associated with patients' age and caregivers' educational status, financial well-being was the most important predictor of respondents' quality of life and caregiving burden.
conclusionsTo improve DBMD caregivers' quality of life and alleviate their burden, future intervention programs should promote resiliency and active coping and develop a social support system and respite care. Additionally, it is crucial to provide caregivers with adequate financial resources to fulfil their needs.
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