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Intensive physical training in children with heritable connective tissue disorders is feasible and safe: a pilot

Lisanne de Koning1,2, Jessica Warnink-Kavelaars2,3, Liesbeth van Vulpen1,4

  • 1Centre of Expertise Urban Vitality, Faculty of Health, Amsterdam University of Applied Sciences, Amsterdam, The Netherlands.

Disability and Rehabilitation
|February 24, 2025
PubMed

Insights

This pilot study found a physical training program feasible and safe for children with heritable connective tissue disorders (HCTD). While acceptability was low, participants showed improvements in fitness, strength, and reduced pain, supporting further research.

Area of Science:

  • Pediatric physical therapy
  • Connective tissue disorder management
  • Rehabilitation science

Background:

  • Heritable connective tissue disorders (HCTD) like Marfan syndrome, Loeys-Dietz syndrome, and Ehlers-Danlos syndromes impact children's physical function.
  • Tailored exercise interventions are crucial for managing symptoms and improving quality of life in pediatric HCTD populations.
  • Limited research exists on the feasibility and impact of structured physical training programs for this specific demographic.

Purpose of the Study:

  • To assess the feasibility, safety, and acceptability of a combined physical training and parental support program for children with HCTD.
  • To explore preliminary effects of the intervention on individual training goals and physical fitness parameters.
  • To gather data for designing larger, more robust studies on HCTD management in pediatric populations.

Main Methods:

  • A 12-week program involving functional power training (FPT) and high-intensity interval training (HIIT), thrice weekly.
  • Data collection focused on feasibility, safety (adverse events), and acceptability (participation rates).
  • Preliminary physical fitness assessments included aerobic/anaerobic capacity, strength, agility, pain, and fatigue levels.

Main Results:

  • The intervention was feasible and safe, with no serious adverse events reported.
  • Acceptability was a challenge, indicated by a 27.8% participation rate.
  • Preliminary results showed 80% achieved training goals, 75% improved aerobic capacity, and 70% enhanced strength/agility, with reduced pain and fatigue.

Conclusions:

  • Tailored physical training shows potential benefits for children with HCTD, demonstrating feasibility and safety.
  • Addressing acceptability challenges through enhanced engagement strategies is crucial for future interventions.
  • This pilot study provides a foundation for larger effectiveness trials in pediatric HCTD management.
Abstract

Keywords:
Heritable connective tissue disordersfunctional power traininghigh intensity interval trainingpediatric physical therapyphysical fitness

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