Feasibility and safety of sailing based rehabilitation for rare skeletal disorders using wearable sensors and patient reported outcomes

: Rare skeletal disorders (RSDs) cause disability, pain, and reduced quality of life (QoL), with limited access to effective rehabilitation. This pilot study evaluated the feasibility, safety, and preliminary effects of a sailing-based rehabilitation program for adolescents with RSDs, integrating wearable inertial sensors and validated patient-reported outcomes. Eight adolescents (12-18 years) with RSDs participated in a five-day sailing intervention focused on physical activity, social interaction, and psychological reflection. Feasibility (recruitment, retention, adherence, acceptability) and safety (adverse events) were primary outcomes. Secondary measures included QoL (EuroQol 5-Dimension), psychological well-being (Pediatric Outcomes Data Collection Instrument, Rosenberg Self-Esteem Scale, Young Persons-Clinical Outcomes in Routine Evaluation, Tampa Scale of Kinesiophobia), and physical function assessed using inertial measurement units. All feasibility criteria met or exceeded: 100% retention and adherence, and high acceptability (mean score 3,75, SD = 0,46). No serious adverse events occurred. Significant benefits were found in proprioception (p = 0.01), postural control (p = 0.01), gait quality (p = 0.04), and upper limb function (p = 0.02). Trends toward improved QoL (EuroQol 5-Dimension Visual Analogue Scale, p = 0.10), happiness (Pediatric Outcomes Data Collection Instrument, p = 0.06), and reduced kinesiophobia (Tampa Scale of Kinesiophobia, p = 0.03) were observed. Some effects declined at follow-up. Sailing-based rehabilitation appears feasible, safe, and potentially effective for improving physical and psychological outcomes in RSDs. These findings support the development of larger controlled trials.Trial registration: ClinicalTrials.gov NCT06397443; release date: May 2, 2024.