Leisure-Time Physical Activity Interventions for Health Promotion in Individuals With Rett Syndrome: Scoping Review.

Abstract

Background: While half of individuals with Rett syndrome (RTT) are older than 50 years, research shows that they have low levels of physical activity, especially for those of advanced age and poor ambulation. Despite this evidence, recent studies underscore the potential of leisure-time physical activity interventions to improve health outcomes and quality of life for individuals with RTT.

Objective: This scoping review aimed to summarize the state of the science regarding physical activity interventions for individuals with RTT and their families across the life span; map the extent, range, and nature of research activity in telehealth; and describe outcomes targeted by interventions with a focus on health-related fitness.

Methods: Systematic searches were performed in the MEDLINE, Scopus, Google Scholar, and CINAHL Plus databases. The data charted from eligible studies included specific details about the participants, study design, setting, intervention characteristics, outcomes, and relevant key findings. Inclusion criteria were (1) original, peer-reviewed research; (2) full-text articles in English; (3) studies reporting a leisure-time physical activity intervention; and (4) a sample of individuals with RTT and/or caregivers.

Results: A total of 23 studies enrolled 200 participants in total (mean age 13, SD 7, range 2-48 years). Participants were all female individuals, and studies included mostly those who were ambulatory. RTT severity was reported in less than half (9/23, 39%) of the studies; however, participants with mild to severe scores were represented. Most of the studies (20/23, 87%) used a case study design or single-group repeated measures, and only 13% (3/23) were randomized trials. The focus was primarily on gross motor function, walking ability, and physical activity outcomes. In total, 39% (9/23) of the interventions implemented telehealth into their design, primarily using remote video calls between a physical therapist and the participants' parents.

Conclusions: The findings of this review provide a foundation for designing evidence-based, scalable physical activity programs tailored to the unique needs of individuals with RTT. The integration of telehealth strategies offers a promising avenue for enhancing accessibility and caregiver engagement.