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<p>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 (<i>p</i> = 0.01), postural control (<i>p</i> = 0.01), gait quality (<i>p</i> = 0.04), and upper limb function (<i>p</i> = 0.02). Trends toward improved QoL (EuroQol 5-Dimension Visual Analogue Scale, <i>p</i> = 0.10), happiness (Pediatric Outcomes Data Collection Instrument, <i>p</i> = 0.06), and reduced kinesiophobia (Tampa Scale of Kinesiophobia, <i>p</i> = 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.</p><p>Trial registration: ClinicalTrials.gov NCT06397443; release date: May 2, 2024.</p>

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

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2025年10月23日

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  • Manila Boarini,
  • Federico Banchelli,
  • Silvia Fittipaldi,
  • Davide Scognamiglio,
  • Giuseppina M. Farella,
  • Daniela Platano,
  • Giulia Rogati,
  • Enrica Di Sipio,
  • Giacomo Villa,
  • Lisa Berti,
  • Alberto Leardini,
  • Silvana Sartini,
  • Annalisa Scopinaro,
  • Luca Sangiorgi

摘要

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.