Assessing exercise and rehabilitation needs of adults with ehlers-danlos syndromes and generalized hypermobility spectrum disorder in Canada

Introduction Exercise and rehabilitation therapy (ERT) has emerged as a potentially critical component of treatment for Ehlers-Danlos Syndromes (EDS) and conditions sharing similar physical sequelae, such as generalized hypermobility spectrum disorder (G-HSD). However, there is only a modest amount of research supporting its efficacy, despite robust benefits observed in other populations with high-musculoskeletal morbidity. It is possible that the underwhelming signal of benefit is due to a lack of research on ERT-related behaviours, preferences and goals in EDS/G-HSD, which may undermine intervention engagement. Identifying these elements is needed to better understand how to optimize ERT programming. Methods A cross-sectional survey design was used to identify the behaviours, beliefs, facilitators and barriers, preferences and goals related to ERT programming in adults with EDS/G-HSD across Canada. The online survey was developed by clinicians in the GoodHope EDS Clinic (Toronto, Canada) and patient partners, and recruitment occurred via the GoodHope EDS Clinic and Canadian EDS agencies. Results Forty-five participants completed the survey. The majority of respondents (71%) did not meet the Canadian physical activity guidelines. Most strongly agreed that exercise improves fitness (78%), is important for long-term management of EDS/G-HSD (69%) and is important for mental health (67%). The leading barriers to exercise were fear of injury (64%), pain (60%), and worsening of symptoms after exercise (56%). Participants most preferred ERT programming to be delivered by a health care professional (100%). The most frequently listed exercise-related goal was to improve or maintain physical capacity (47%). Conclusion These findings inform participant-centered recommendations for future research studies and the optimization of ERT programming, towards improved intervention engagement in EDS/G-HSD.