ArticleInternational journal of environmental research and public health2021
Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease.
Article in International journal of environmental research and public health, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 1 of them a synthesis that pooled it.
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The trial behind it
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Who cites it
19 citing papers in PubMed, 1 synthesis or guideline pooled it, 26 citations in OpenAlex.
- Caregiver Burden of Spinal Muscular Atrophy: A Systematic Review.PharmacoEconomics · 2023Pooled it
- Burden and social context of caregivers of children and adolescents with Charcot-Marie-Tooth disease.Arquivos de neuro-psiquiatria · 2026Article
- Building capacity for patient-engagement in neuromuscular disease research: A network project.Journal of neuromuscular diseases · 2026Article
- Societal costs associated with mothers of children with major congenital anomalies: a population-based matched cohort study in Denmark.BMJ public health · 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
- 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
- Advances in Duchenne Muscular Dystrophy: Diagnostic Techniques and Dystrophin Domain Insights.International journal of molecular sciences · 2025Review
- The CarerQol Instrument: A Systematic Review, Validity Analysis, and Generalization Reliability Study.Journal of clinical medicine · 2025Review
- Caregiver-Reported Economic Impacts of Pediatric Rare Diseases-A Scoping Review.Healthcare (Basel, Switzerland) · 2024Article
- AI-boosted and motion-corrected, wireless near-infrared sensing system for continuously monitoring laryngeal muscles.Proceedings of the National Academy of Sciences of the United States of America · 2024Article
- Experiences of quality of life and access to health services among rare disease caregivers: a scoping review.Orphanet journal of rare diseases · 2024Article
- Perspectives on and Experiences With Bullying From Youth With Neuromuscular Conditions.Journal of child neurology · 2024Article
- Predictors of overload in parents of children with neuromuscular diseases.Frontiers in neurology · 2024Article
- An Update of Clinical, Epidemiological, and Psychosocial Features in Gamma-Sarcoglycanopathy.Muscles (Basel, Switzerland) · 2023Review
- Needs of informal caregivers of people with a rare disease: a rapid review of the literature.BMJ open · 2022Review
- Parental Burden and Quality of Life in 5q-SMA Diagnosed by Newborn Screening.Children (Basel, Switzerland) · 2022Article
- The Role of Associations in Reducing the Emotional and Financial Impact on Parents Caring for Children with Duchenne Muscular Dystrophy: A Cross-Cultural Study.International journal of environmental research and public health · 2022Article
- Factors associated with care- and health-related quality of life of caregivers of children with juvenile idiopathic arthritis.Pediatric rheumatology online journal · 2022Article
Corrections and comments
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Authors and funding
13 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
This study aims to evaluate the costs of informal care for children with neuromuscular disease and evaluate how physical and psychological health is associated with socio-demographic variables. A cross sectional design was used with a convenience sample of 110 carers that participated in this study. Participants were recruited from Spanish hospitals and rare diseases organizations. Economic costs and sociodemographic aspects were assessed using the economic costs questionnaire and the sociodemographic questionnaire. Physical and psychological health was evaluated using the CarerQol-7D, PHQ-15, Barthel Index, Zarit Overload Scale and Satisfaction with Life Scale. Carers of children with neuromuscular disease spent a large percentage of their annual income in physical therapy, psychological care and speech therapy. Informal costs differed according to the degree of dependency of the child. These were higher in those caregivers whose child under their care presented low functional independence. The loss of work productivity was related to marital status, use of professional services and the child's dependency. Finally, carers who were female, single or separated and without a job showed worse physical and psychological health. The results highlighted that carers have to face a number of high costs because of the non-existence of social protection and due to the child's diagnosis.
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Registered trials
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