J. Michell-Sodhi, D. Moat, T. Dias, J. Mason, E. Robinson, M. Schiava, E. Barr, C. Bolano, S. Doaa, K. Wong, E. Maha, G. Emma, G. Michela, M. Michelle, G. Tasca, J. Diaz-Manera, M. James, V. Straub, C. Marini-Bettolo, R. Muni-Lofra
{"title":"208P 英格兰北部的神经肌肉疾病患者对国民健康服务局提供的轮椅服务是否满意?","authors":"J. Michell-Sodhi, D. Moat, T. Dias, J. Mason, E. Robinson, M. Schiava, E. Barr, C. Bolano, S. Doaa, K. Wong, E. Maha, G. Emma, G. Michela, M. Michelle, G. Tasca, J. Diaz-Manera, M. James, V. Straub, C. Marini-Bettolo, R. Muni-Lofra","doi":"10.1016/j.nmd.2024.07.059","DOIUrl":null,"url":null,"abstract":"<div><div>People living with neuromuscular disorders (NMD) often describe weakness, reduced mobility, falls, pain and fatigue as factors requiring mobility support with a wheelchair (WC). The timely and appropriate provision of mobility aids, including WC can help manage symptoms and improve quality of life for both patient and care givers. Optimising WC provision is essential in facilitating independence in functional ability, participation and activities of daily living. This is particularly relevant for those who are reliant on powered wheelchair (PWC) provision during waking hours to enable independent mobility. The specific WC prescription needs of persons with NMD are not well documented. Within the UK, regional variations in WC provision exist leading to disparity and dissatisfaction with the provided service. The aim of this project was to understand National Health Service WC provision and level of satisfaction with WC prescription in our clinical cohort. We surveyed 149 wheelchair users with NMD living in the North of England between 2019-2023. Respondents were aged 3-81 years, with a mean age 33 years. 42 respondents were paediatric. Diagnoses included Duchenne muscular dystrophy (45), spinal muscular atrophy (22), myotonic dystrophy (14), limb girdle muscular dystrophy (12), and Becker muscular dystrophy (13). 82 respondents used PWC, 49 a manual WC (MWC) and 17 power-assisted MWC. A third of respondents felt that their needs were not met by their current WC prescription. 15% of respondents reported delay in WC provision. This survey highlights concern at current practises in WC provision in the North of England and the need to determine evidence-based best practice guidelines for WC prescription for persons with NMD more generally.</div></div>","PeriodicalId":19135,"journal":{"name":"Neuromuscular Disorders","volume":"43 ","pages":"Article 104441.50"},"PeriodicalIF":2.7000,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"208P Are people living with neuromuscular disorders in the north of England satisfied with National Health Service wheelchair service provision?\",\"authors\":\"J. Michell-Sodhi, D. Moat, T. Dias, J. Mason, E. Robinson, M. Schiava, E. Barr, C. Bolano, S. Doaa, K. Wong, E. Maha, G. Emma, G. Michela, M. Michelle, G. Tasca, J. Diaz-Manera, M. James, V. Straub, C. Marini-Bettolo, R. Muni-Lofra\",\"doi\":\"10.1016/j.nmd.2024.07.059\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><div>People living with neuromuscular disorders (NMD) often describe weakness, reduced mobility, falls, pain and fatigue as factors requiring mobility support with a wheelchair (WC). The timely and appropriate provision of mobility aids, including WC can help manage symptoms and improve quality of life for both patient and care givers. Optimising WC provision is essential in facilitating independence in functional ability, participation and activities of daily living. This is particularly relevant for those who are reliant on powered wheelchair (PWC) provision during waking hours to enable independent mobility. The specific WC prescription needs of persons with NMD are not well documented. Within the UK, regional variations in WC provision exist leading to disparity and dissatisfaction with the provided service. The aim of this project was to understand National Health Service WC provision and level of satisfaction with WC prescription in our clinical cohort. We surveyed 149 wheelchair users with NMD living in the North of England between 2019-2023. Respondents were aged 3-81 years, with a mean age 33 years. 42 respondents were paediatric. Diagnoses included Duchenne muscular dystrophy (45), spinal muscular atrophy (22), myotonic dystrophy (14), limb girdle muscular dystrophy (12), and Becker muscular dystrophy (13). 82 respondents used PWC, 49 a manual WC (MWC) and 17 power-assisted MWC. A third of respondents felt that their needs were not met by their current WC prescription. 15% of respondents reported delay in WC provision. This survey highlights concern at current practises in WC provision in the North of England and the need to determine evidence-based best practice guidelines for WC prescription for persons with NMD more generally.</div></div>\",\"PeriodicalId\":19135,\"journal\":{\"name\":\"Neuromuscular Disorders\",\"volume\":\"43 \",\"pages\":\"Article 104441.50\"},\"PeriodicalIF\":2.7000,\"publicationDate\":\"2024-10-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Neuromuscular Disorders\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://www.sciencedirect.com/science/article/pii/S0960896624002232\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Neuromuscular Disorders","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S0960896624002232","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
208P Are people living with neuromuscular disorders in the north of England satisfied with National Health Service wheelchair service provision?
People living with neuromuscular disorders (NMD) often describe weakness, reduced mobility, falls, pain and fatigue as factors requiring mobility support with a wheelchair (WC). The timely and appropriate provision of mobility aids, including WC can help manage symptoms and improve quality of life for both patient and care givers. Optimising WC provision is essential in facilitating independence in functional ability, participation and activities of daily living. This is particularly relevant for those who are reliant on powered wheelchair (PWC) provision during waking hours to enable independent mobility. The specific WC prescription needs of persons with NMD are not well documented. Within the UK, regional variations in WC provision exist leading to disparity and dissatisfaction with the provided service. The aim of this project was to understand National Health Service WC provision and level of satisfaction with WC prescription in our clinical cohort. We surveyed 149 wheelchair users with NMD living in the North of England between 2019-2023. Respondents were aged 3-81 years, with a mean age 33 years. 42 respondents were paediatric. Diagnoses included Duchenne muscular dystrophy (45), spinal muscular atrophy (22), myotonic dystrophy (14), limb girdle muscular dystrophy (12), and Becker muscular dystrophy (13). 82 respondents used PWC, 49 a manual WC (MWC) and 17 power-assisted MWC. A third of respondents felt that their needs were not met by their current WC prescription. 15% of respondents reported delay in WC provision. This survey highlights concern at current practises in WC provision in the North of England and the need to determine evidence-based best practice guidelines for WC prescription for persons with NMD more generally.
期刊介绍:
This international, multidisciplinary journal covers all aspects of neuromuscular disorders in childhood and adult life (including the muscular dystrophies, spinal muscular atrophies, hereditary neuropathies, congenital myopathies, myasthenias, myotonic syndromes, metabolic myopathies and inflammatory myopathies).
The Editors welcome original articles from all areas of the field:
• Clinical aspects, such as new clinical entities, case studies of interest, treatment, management and rehabilitation (including biomechanics, orthotic design and surgery).
• Basic scientific studies of relevance to the clinical syndromes, including advances in the fields of molecular biology and genetics.
• Studies of animal models relevant to the human diseases.
The journal is aimed at a wide range of clinicians, pathologists, associated paramedical professionals and clinical and basic scientists with an interest in the study of neuromuscular disorders.