Queen Square Centre for Neuromuscular Diseases, National Hospital for Neurology and Neurosurgery, UCLH NHS Trust, London, UK.
Department of Neuromuscular Diseases, UCL Institute of Neurology, London, UK.
Disabil Rehabil. 2024 Jun;46(13):2789-2798. doi: 10.1080/09638288.2023.2230128. Epub 2023 Jul 4.
People with rare neurological conditions (RNCs) struggle to achieve regular physical activity (PA). This study explored experiences of people with RNC engaging in PA, their carers, and health care professionals (HCPs) working with them.
MATERIALS & METHODS: We developed three surveys: for individuals living with RNCs, their carers, and HCPs working with them. Themes from interviews with RNC charity representatives were used to co-design questions, together with people living with RNCs, their representatives, and an expert panel. Surveys were disseminated charity mailing lists, social media accounts, and professional networks (HCPs).
We received 436 responses (225 people with RNC, 94 carers, 117 HCPs). Most respondents with RNC achieved some level of regular PA but needed motivation to maintain it. Many felt they lacked knowledge on starting and staying active, with scarce resources and support. Most HCP respondents worked in specialist services, and overwhelmingly agreed that people with RNC should be physically active, while acknowledging lack of evidence and resources.
We identified key barriers at environmental/organisational, interpersonal, and intrapersonal levels, highlighting a critical lack of support for people with RNC across UK health services. These factors can be targeted to increase engagement in PA.Implications for rehabilitationPeople living with rare neurological conditions experience barriers to engaging in physical activity, with some common to more prevalent neurological diseases, e.g. access and facilities, but some notable differences due to the rarity of the conditionFor people living with rare neurological conditions, and their carers, there is a lack of knowledge on safe and appropriate engagement in physical activityIncreasing the knowledge of health and exercise professionals may improve how they support people with rare neurological disease to engage with physical activity.Evidence based resources and recommendations for people living with rare neurological conditions, and professionals working with them, may facilitate engagement in physical activity.
患有罕见神经疾病（RNC）的人难以进行有规律的身体活动（PA）。本研究探讨了患有 RNC 的人、他们的照顾者以及与之合作的医疗保健专业人员（HCP）参与身体活动的经验。
我们开发了三份调查问卷：一份针对患有 RNC 的个人，一份针对他们的照顾者，一份针对与他们合作的 HCP。访谈中 RNC 慈善机构代表的主题被用于共同设计问题，同时还邀请了患有 RNC 的人、他们的代表以及一个专家小组参与。调查问卷通过慈善机构邮件列表、社交媒体账户和专业网络（HCP）进行分发。
我们收到了 436 份回复（225 名患有 RNC 的人，94 名照顾者，117 名 HCP）。大多数患有 RNC 的受访者达到了一定程度的有规律的 PA，但需要动力来维持。许多人感到他们缺乏开始和保持活跃的知识，资源和支持也很匮乏。大多数 HCP 受访者在专门服务机构工作，绝大多数人同意患有 RNC 的人应该进行身体活动，同时也认识到缺乏证据和资源。
我们确定了环境/组织、人际和个体内部层面的关键障碍，突出了英国卫生服务系统对 RNC 患者的支持严重不足。这些因素可以作为目标，以增加他们对 PA 的参与度。
患有罕见神经疾病的人在参与身体活动方面面临障碍，其中一些与更普遍的神经疾病相同，例如获取设施，但由于疾病的罕见性，也存在一些明显的差异。对于患有罕见神经疾病的人及其照顾者，他们缺乏关于安全和适当参与身体活动的知识。增加健康和运动专业人员的知识可能会改善他们支持患有罕见神经疾病的人参与身体活动的方式。为患有罕见神经疾病的人和与他们合作的专业人员提供基于证据的资源和建议，可能有助于他们参与身体活动。
