Exploring the issues that influence how people with rare neurological conditions engage in physical activity

Abstract

Purpose

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 via charity mailing lists, social media accounts, and professional networks (HCPs).

Results

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.

Conclusions

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 rehabilitation

• People 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 condition

• For people living with rare neurological conditions, and their carers, there is a lack of knowledge on safe and appropriate engagement in physical activity

• Increasing 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

Keywords:

• physical activity
• engagement
• rare neurological conditions

Acknowledgments

We would like the acknowledge the input of our stakeholder groups and charity representatives from the Muscular Dystrophy Association, Ataxia UK, HSP support group, PSP Association, HD Association of England and Wales.

Additional information

Funding

This work was funded by an NIHR Programme Development Grant RP-DG-0517-10002 (Co-Chief Investigators: G.R. & M.B.). This is a summary of independent research funded by the National Institute for Health Research (NIHR)’s Programme Development Grant Programme. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care. GR received funding from NIHR Biomedical Research Centre UCL/UCLH. ²⁶Centre for Trials Research receives funding from Health and Care Research Wales and Cancer Research UK.