Background: Exercise produces significant health benefits, even for individuals with chronic conditions like myotonic dystrophy (DM). However, the multi-systemic features of DM often result in sedentary behaviors and reduced engagement in physical activity and exercise (PA/E), which can contribute to additional physical impairments. To promote active living among adults with DM, it is crucial to understand barriers and factors that influence their PA/E behaviors. Therefore, this study aims to explore these barriers and influential factors.
Methods: Adults (18+) from the National Registry completed questionnaires on demographics, barriers to PA/E, stages of change (SOC), self-efficacy (SE), and processes of change (POC). SOC was dichotomized into active and inactive groups, with differences between groups analyzed using appropriate statistical tests for variable type and distribution. Logistic regression was used to identify predictors of SOC, incorporating gender, education, DM type, problems, barriers, SE, and POC.
Results: Of the 98 participants (62% female), most were diagnosed with DM type 1 (56.1%) and rated themselves as inactive (55.3%). Inactive participants reported more problems (p=0.010) and barriers (p<0.001), lower SE (p<0.001), and less use of cognitive (p=0.003), behavioral (p<0.001), total POC (p<0.001) compared to active participants. Significant differences were also observed by education (p=0.033) and DM type (p=0.017). The most common barriers to PA/E were lack of energy (47.9%) and motivation (45.9%). Significant predictors of SOC included DM type, reported barriers, and behavioral POC, with DM type 2 participants having higher odds of being active, each additional barrier reducing odds of being active by 41.4%, and each additional behavioral POC increasing odds of being active by 7.8%. Conclusions: This survey identified key barriers to PA/E and predictors of SOC among individuals with DM, providing insights for targeted interventions. Addressing these barriers and enhancing behavior change processes may promote long-term engagement in PA/E, ultimately improving health and well-being. Funding: Muscular Dystrophy Association Research Grant