{"title":"216P 在英国神经肌肉中心对患有神经肌肉疾病的成年人的身体残疾程度和体育活动情况进行问卷调查","authors":"T. Willis , K. Strachan , N. Emery","doi":"10.1016/j.nmd.2024.07.067","DOIUrl":null,"url":null,"abstract":"<div><div>Neuromuscular diseases (NMD) are either genetic or acquired, and to date, most have no specific pharmaceutical intervention effective in arresting or improving disease progression. They are, therefore, all progressive in nature with a gradual or rapid loss of functional abilities; loss of ambulation, upper or lower limb weakness or both, loss of independence and associated co-morbidities; respiratory, cardiac, diabetes, and obesity. Neuromuscular diseases are complex and require careful management. One intervention that is available to most NMD patients is physical activity (PA). Physical activity has been shown to have benefits and be safe for those with NMD. Therefore, NMD patients should be encouraged to engage in physical activity. To assess adult patients with NMD and participation in physical activity, the 'Rapid Assessment of Physical Activity' (RAPA) was used. This is a patient questionnaire that uses a 'yes/no' format with 7 fields, with 1 being no physical activity to 7 being vigorous activity for 20 minutes, 3 or more times, per week. Stretching and resistance training are also assessed. To determine the level of physical impairment the 'Summary of Functional Tests' (SOFT) was used. This simple assessment tool provides a quantitative description of a person's physical function. We present the results (n=66) of a prospective review of adult patients seen in a NM clinic between May and December 2023 and delivered and assessed by 2 NM specialist physiotherapists. Taken together the RAPA plus the SOFT should provide an overview of the level of physical activity engagement and physical impairment. Findings can used to determine if NMD patients engage in physical activity and if this is at the recommended amount, as per the American College of Sports Medicine guidelines.</div></div>","PeriodicalId":19135,"journal":{"name":"Neuromuscular Disorders","volume":"43 ","pages":"Article 104441.58"},"PeriodicalIF":2.7000,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"216P A questionnaire-based investigation into levels physical disability and of physical activity in adults with neuromuscular disease in a UK neuromuscular centre\",\"authors\":\"T. Willis , K. Strachan , N. Emery\",\"doi\":\"10.1016/j.nmd.2024.07.067\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><div>Neuromuscular diseases (NMD) are either genetic or acquired, and to date, most have no specific pharmaceutical intervention effective in arresting or improving disease progression. They are, therefore, all progressive in nature with a gradual or rapid loss of functional abilities; loss of ambulation, upper or lower limb weakness or both, loss of independence and associated co-morbidities; respiratory, cardiac, diabetes, and obesity. Neuromuscular diseases are complex and require careful management. One intervention that is available to most NMD patients is physical activity (PA). Physical activity has been shown to have benefits and be safe for those with NMD. Therefore, NMD patients should be encouraged to engage in physical activity. To assess adult patients with NMD and participation in physical activity, the 'Rapid Assessment of Physical Activity' (RAPA) was used. This is a patient questionnaire that uses a 'yes/no' format with 7 fields, with 1 being no physical activity to 7 being vigorous activity for 20 minutes, 3 or more times, per week. Stretching and resistance training are also assessed. To determine the level of physical impairment the 'Summary of Functional Tests' (SOFT) was used. This simple assessment tool provides a quantitative description of a person's physical function. We present the results (n=66) of a prospective review of adult patients seen in a NM clinic between May and December 2023 and delivered and assessed by 2 NM specialist physiotherapists. Taken together the RAPA plus the SOFT should provide an overview of the level of physical activity engagement and physical impairment. Findings can used to determine if NMD patients engage in physical activity and if this is at the recommended amount, as per the American College of Sports Medicine guidelines.</div></div>\",\"PeriodicalId\":19135,\"journal\":{\"name\":\"Neuromuscular Disorders\",\"volume\":\"43 \",\"pages\":\"Article 104441.58\"},\"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/S0960896624002311\",\"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/S0960896624002311","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
216P A questionnaire-based investigation into levels physical disability and of physical activity in adults with neuromuscular disease in a UK neuromuscular centre
Neuromuscular diseases (NMD) are either genetic or acquired, and to date, most have no specific pharmaceutical intervention effective in arresting or improving disease progression. They are, therefore, all progressive in nature with a gradual or rapid loss of functional abilities; loss of ambulation, upper or lower limb weakness or both, loss of independence and associated co-morbidities; respiratory, cardiac, diabetes, and obesity. Neuromuscular diseases are complex and require careful management. One intervention that is available to most NMD patients is physical activity (PA). Physical activity has been shown to have benefits and be safe for those with NMD. Therefore, NMD patients should be encouraged to engage in physical activity. To assess adult patients with NMD and participation in physical activity, the 'Rapid Assessment of Physical Activity' (RAPA) was used. This is a patient questionnaire that uses a 'yes/no' format with 7 fields, with 1 being no physical activity to 7 being vigorous activity for 20 minutes, 3 or more times, per week. Stretching and resistance training are also assessed. To determine the level of physical impairment the 'Summary of Functional Tests' (SOFT) was used. This simple assessment tool provides a quantitative description of a person's physical function. We present the results (n=66) of a prospective review of adult patients seen in a NM clinic between May and December 2023 and delivered and assessed by 2 NM specialist physiotherapists. Taken together the RAPA plus the SOFT should provide an overview of the level of physical activity engagement and physical impairment. Findings can used to determine if NMD patients engage in physical activity and if this is at the recommended amount, as per the American College of Sports Medicine guidelines.
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.