ArticleSAGE open medicine2019
Palliative care services in families of males with muscular dystrophy: Data from MD STARnet.
Article in SAGE open medicine, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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Who cites it
5 citing papers in PubMed.
- Disease-modifying therapies for spinal muscular atrophy: Family experience, ethical considerations, and the role of social determinants of health.Journal of neuromuscular diseases · 2026Article
- Differences in patient access to and utilization of caregiving services: a scoping review.BMC health services research · 2026Article
- Safety and effectiveness of ataluren in patients with nonsense mutation DMD in the STRIDE Registry compared with the CINRG Duchenne Natural History Study (2015-2022): 2022 interim analysis.Journal of neurology · 2023Article
- Palliative Care in Pediatric Pulmonology.Children (Basel, Switzerland) · 2021Review
- The adult multidisciplinary respiratory neuromuscular clinic.Breathe (Sheffield, England) · 2020Review
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Authors and funding
7 authors.
Funding
Abstract
introductionInformation on use of palliative care services among individuals with Duchenne and Becker muscular dystrophy is scant despite the clearly documented need.
methodsWe examined associations between uptake of palliative care services by 233 males with Duchenne and Becker muscular dystrophy aged 12 and older for both caregiver and affected male characteristics using the Muscular Dystrophy Surveillance Tracking and Research Network baseline interview.
resultsNinety-one percent of caregivers (213/233) used at least one palliative care service. Case management had the highest frequency of use (59%). Use of palliative care was more frequently associated with the characteristics of affected males, as were some individual palliative care services. Utilization of six individual services differed among Muscular Dystrophy Surveillance Tracking and Research Network sites. While research suggests that pain is a frequent problem in Duchenne and Becker muscular dystrophy, only 12.5% reported use of pain management services. DISCUSSION: Although palliative care use among families of males with Duchenne and Becker muscular dystrophy is high overall, there is much variability in use of individual services. Use of palliative care is driven by disease experience in the affected male. Many of the care recommendations for these individuals highlight the importance for early involvement of palliative care professionals.
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