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Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
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Development of a Core Patient-Reported Outcome (Measures) Set for Pediatric Physical Therapy.

Selina Limmen1, Dorinde L Korteling, Manon A T Bloemen

  • 1Department of Child and Adolescent Psychiatry & Psychosocial Care, Amsterdam UMC, University of Amsterdam, Emma Children's Hospital, Amsterdam, The Netherlands (Limmen, Korteling, Luijten, van Oers, and Haverman); Child Development, Amsterdam Reproduction and Development, Amsterdam, The Netherlands (Limmen, Korteling, Luijten, van Oers, and Haverman); Mental Health, Amsterdam Public Health, Amsterdam (Limmen, Korteling, Luijten, van Oers, and Haverman); Personalized Medicine, Amsterdam Public Health, Amsterdam (Limmen); Methodology, Amsterdam Public Health, Amsterdam (Korteling, Luijten); Research Group Moving, Growing, and Thriving Together, HU University of Applied Sciences Utrecht, Utrecht, The Netherlands (Bloemen); Department of Epidemiology and Data Science, Amsterdam UMC, Vrije Universiteit, Amsterdam, The Netherlands (Luijten); Department of Rehabilitation Medicine, Amsterdam Movement Sciences, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands (Engelbert); Centre of Expertise Urban Vitality, Faculty of Health, Amsterdam University of Applied Sciences, Amsterdam, The Netherlands (Engelbert); CAPHRI, Maastricht University, Maastricht, The Netherlands (Rameckers); Center of Expertise, Adelante Rehabilitation, Valkenburg, The Netherlands (Rameckers); Rehabilitation Science and Physiotherapy, REVAL, Hasselt University, Hasselt, Belgium (Rameckers); Amsterdam Public Health, Quality of Care, Amsterdam, The Netherlands (van Oers); Digital Health, Amsterdam Public Health, Amsterdam, The Netherlands (Haverman); UMC Utrecht Brain Center, University Medical Center Utrecht, Utrecht, The Netherlands (Ketelaar); and De Hoogstraat Rehabilitation, Center of Excellence for Rehabilitation Medicine Utrecht, Utrecht, The Netherlands (Ketelaar).

Pediatric Physical Therapy : the Official Publication of the Section on Pediatrics of the American Physical Therapy Association
|July 3, 2026
PubMed
Summary

A core set of patient-reported outcomes (PROs) and measures (PROMs) was developed for pediatric physical therapy. This standardized approach aids daily practice, research, and quality assessment in pediatric rehabilitation.

Keywords:
patient-centered carepatient-centered researchpatient-reported outcome measurespediatric physical therapypediatric rehabilitationquality of life

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Area of Science:

  • Pediatric Physical Therapy
  • Rehabilitation Medicine
  • Patient-Reported Outcomes Research

Background:

  • Standardized patient-reported outcomes (PROs) and measures (PROMs) are crucial for evaluating pediatric physical therapy effectiveness.
  • Current assessment tools lack a unified core set for pediatric physical therapy, hindering consistent practice and research.
  • A need exists for a comprehensive PRO(M) set applicable to daily practice, research, and quality assessment in pediatric physical therapy.

Purpose of the Study:

  • To establish a core set of patient-reported outcomes (PROs) and corresponding measures (PROMs) for pediatric physical therapy.
  • To ensure the developed PRO(M) set is suitable for clinical practice, research endeavors, and quality evaluation.
  • To provide a foundation for consistent and effective patient-centered care in pediatric physical therapy.

Main Methods:

  • Defined the scope of the core set through expert consensus and literature review.
  • Identified relevant PROs via focus groups and interviews with pediatric patients, parents, and physical therapists.
  • Prioritized PROs through a survey of pediatric physical therapists and selected validated PROMs for each outcome.

Main Results:

  • A core set of nine PROs was established, categorized into functioning, symptoms, and overarching domains.
  • The domains include physical functioning, participation, social functioning, pain, fatigue, quality of life, and perceived overall health.
  • Validated PROMs were identified for all selected PROs, with the exception of 'participation,' which requires further development.

Conclusions:

  • A core PRO(M) set for pediatric physical therapy has been developed and recommended for implementation.
  • The established set provides a standardized framework for assessing patient outcomes in pediatric physical therapy.
  • Further research is recommended to develop a suitable generic PROM for assessing 'participation' in pediatric populations.