Multi-centre audit of myotonic dystrophy care in UK: is it the time for national recommendations?
| Autor: | Mohit Litesh, Paul R Campbell, Sadaf Mehboob, Frederick Vonberg, Woon Senn Koh, Phillip Kelly, Priya Shanmugarajah, Stuart Viegas, James B Lilleker, Channa Hewamadduma |
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| Rok vydání: | 2022 |
| Předmět: | |
| Zdroj: | Journal of Neurology, Neurosurgery & Psychiatry. 93:e2.186 |
| ISSN: | 1468-330X 0022-3050 |
| DOI: | 10.1136/jnnp-2022-abn2.4 |
| Popis: | Myotonic Dystrophy Type 1 (DM1) is the most common muscular dystrophy in adults. Structured multi- disciplinary care is required to manage the multi-system involvement, to improve patient safety, and to reduce mortality and morbidity. Previous audits based on the 2018 consensus-based care recommenda- tions have been conducted at individual UK centres. In this study a standardised audit tool was created and deployed to 3 tertiary UK neuroscience centres.In total, data regarding 375 patients (197 (53%) female, mean age 47 years (range 1-84)) with DM1 were analysed. 62% had adult-onset disease. Neurology teams reviewed 64% of patients at least once a year. Key findings included: Cardiology review was performed annually for only 30%; of patients with respiratory needs, only 12% were reviewed six-monthly by specialist teams; Swallowing function was assessed in only 44% of those required; Clinical assessment for cognitive impairment was conducted in 12%.In conclusion, this multi-centre UK audit identifies several significant areas of care that need to be optimised in DM1, even within dedicated neuromuscular clinics. This highlights the need for a national initiative to establish minimum care standards. Such initiative can help drive resource allocation resulting in positive change. |
| Databáze: | OpenAIRE |
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