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?

IF 2.7 4区 医学 Q2 CLINICAL NEUROLOGY Neuromuscular Disorders Pub Date : 2024-10-01 DOI:10.1016/j.nmd.2024.07.059
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
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引用次数: 0

摘要

神经肌肉疾病(NMD)患者通常会出现虚弱、行动能力下降、跌倒、疼痛和疲劳等症状,这些都是需要轮椅(WC)提供行动支持的因素。及时、适当地提供包括轮椅在内的助行器具有助于控制症状,提高患者和护理人员的生活质量。优化轮椅的提供对于促进患者在功能能力、参与和日常生活活动方面的独立性至关重要。这对于那些在清醒时依赖电动轮椅(PWC)实现独立行动的患者来说尤为重要。关于 NMD 患者的特殊轮椅处方需求,目前还没有详细的记录。在英国,各地区在提供轮椅方面存在差异,这导致了服务的不均衡和不满意。本项目旨在了解国民健康服务机构提供的轮椅服务以及我们临床队列中对轮椅处方的满意度。我们在 2019-2023 年间对居住在英格兰北部的 149 名患有 NMD 的轮椅使用者进行了调查。受访者年龄为 3-81 岁,平均年龄为 33 岁。42名受访者为儿科患者。诊断结果包括杜氏肌营养不良症(45 例)、脊髓性肌萎缩症(22 例)、肌强直性营养不良症(14 例)、肢腰肌营养不良症(12 例)和贝克型肌营养不良症(13 例)。82 名受访者使用了残疾人轮椅,49 名受访者使用了手动残疾人轮椅,17 名受访者使用了电动辅助残疾人轮椅。三分之一的受访者认为目前的轮椅处方无法满足他们的需求。15% 的受访者表示在提供 WC 方面存在延误。这项调查凸显了人们对英格兰北部地区目前提供轮椅的做法的担忧,以及为更广泛的 NMD 患者制定以证据为基础的轮椅处方最佳实践指南的必要性。
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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.
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来源期刊
Neuromuscular Disorders
Neuromuscular Disorders 医学-临床神经学
CiteScore
4.60
自引率
3.60%
发文量
543
审稿时长
53 days
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.
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