Consensus statement on physical rehabilitation in children and adolescents with osteogenesis imperfecta

Brigitte Mueller^{1

2}, Raoul Engelbert^{3

4}, Frances Baratta-Ziska⁵, Bart Bartels⁶, Nicole Blanc⁷, Evelise Brizola⁸, Paolo Fraschini⁹, Claire Hill¹⁰, Caroline Marr¹⁰, Lisa Mills¹¹, Kathleen Montpetit¹², Verity Pacey^{13

14}, Miguel Rodriguez Molina¹⁵, Marleen Schuuring⁶, Chantal Verhille¹⁶, Olga de Vries¹⁷, Eric Hiu Kwong Yeung¹⁸, Oliver Semler¹⁹

Affiliations

¹ Unireha, University of Cologne, Center of Prevention and Rehabilitation, Cologne, Germany.
² University of Cologne, Children's Hospital, Kerpenerstraße 62, 50931, Cologne, Germany.
³ ACHIEVE, Center for Applied Research, Faculty of Health, University of Applied Sciences Amsterdam, Amsterdam, The Netherlands.
⁴ Department of Rehabilitation, Academic Medical Centre, University of Amsterdam, Amsterdam Movement Sciences, Amsterdam, The Netherlands.
⁵ Hospital for Special Surgery, NYC, NY, USA.
⁶ Child development and exercise center, Wilhelmina´s Children Hospital, University Medical Center Utrecht, Utrecht, The Netherlands.
⁷ Children's Hospital, Toulouse, France.
⁸ Medical Genetics Service, Hospital de Clinicas de Porto Alegre, Porto Alegre, Brazil.
⁹ IRCCS Eugenio Medea, Bosisio Parini (LC), Italy.
¹⁰ Sheffield Children's NHS Foundation Trust, Sheffield, UK.
¹¹ Bristol Royal Hospital for Children, University Hospitals Bristol NHS Foundation Trust, Bristol, UK.
¹² Shriners Hospital for Children, Montreal, Quebec, Canada.
¹³ The Children's Hospital at Westmead, Sydney, Australia.
¹⁴ Macquarie University, Sydney, Australia.
¹⁵ AHUCE and Fundacion AHUCE, Madrid, Spain.
¹⁶ University of Leuven, Leuven, Belgium.
¹⁷ National Resource center for rare disorders. Part of the National Advisory Unit on Rare Disorders (NKSD), Sunnaas Rehabilitation Hospital, Nesodden, Norway.
¹⁸ The University of Hong Kong, Hong Kong, China.
¹⁹ University of Cologne, Children's Hospital, Kerpenerstraße 62, 50931, Cologne, Germany. joerg.semler@uk-koeln.de.

PMID: 30201006
PMCID: PMC6131938
DOI: 10.1186/s13023-018-0905-4

Consensus statement on physical rehabilitation in children and adolescents with osteogenesis imperfecta

Brigitte Mueller et al. Orphanet J Rare Dis. 2018.

. 2018 Sep 10;13(1):158.

doi: 10.1186/s13023-018-0905-4.

Authors

Affiliations

¹ Unireha, University of Cologne, Center of Prevention and Rehabilitation, Cologne, Germany.
² University of Cologne, Children's Hospital, Kerpenerstraße 62, 50931, Cologne, Germany.
³ ACHIEVE, Center for Applied Research, Faculty of Health, University of Applied Sciences Amsterdam, Amsterdam, The Netherlands.
⁴ Department of Rehabilitation, Academic Medical Centre, University of Amsterdam, Amsterdam Movement Sciences, Amsterdam, The Netherlands.
⁵ Hospital for Special Surgery, NYC, NY, USA.
⁶ Child development and exercise center, Wilhelmina´s Children Hospital, University Medical Center Utrecht, Utrecht, The Netherlands.
⁷ Children's Hospital, Toulouse, France.
⁸ Medical Genetics Service, Hospital de Clinicas de Porto Alegre, Porto Alegre, Brazil.
⁹ IRCCS Eugenio Medea, Bosisio Parini (LC), Italy.
¹⁰ Sheffield Children's NHS Foundation Trust, Sheffield, UK.
¹¹ Bristol Royal Hospital for Children, University Hospitals Bristol NHS Foundation Trust, Bristol, UK.
¹² Shriners Hospital for Children, Montreal, Quebec, Canada.
¹³ The Children's Hospital at Westmead, Sydney, Australia.
¹⁴ Macquarie University, Sydney, Australia.
¹⁵ AHUCE and Fundacion AHUCE, Madrid, Spain.
¹⁶ University of Leuven, Leuven, Belgium.
¹⁷ National Resource center for rare disorders. Part of the National Advisory Unit on Rare Disorders (NKSD), Sunnaas Rehabilitation Hospital, Nesodden, Norway.
¹⁸ The University of Hong Kong, Hong Kong, China.
¹⁹ University of Cologne, Children's Hospital, Kerpenerstraße 62, 50931, Cologne, Germany. joerg.semler@uk-koeln.de.

PMID: 30201006
PMCID: PMC6131938
DOI: 10.1186/s13023-018-0905-4

Abstract

On the occasion of the 13th International Conference on Osteogenesis imperfecta in August 2017 an expert panel was convened to develop an international consensus paper regarding physical rehabilitation in children and adolescents with Osteogenesis imperfecta. The experts were chosen based on their clinical experience with children with osteogenesis imperfecta and were identified by sending out questionnaires to specialized centers and patient organizations in 26 different countries. The final expert-group included 16 representatives (12 physiotherapists, two occupational therapists and two medical doctors) from 14 countries. Within the framework of a collation of personal experiences and the results of a literature search, the participating physiotherapists, occupational therapists and medical doctors formulated 17 expert-statements on physical rehabilitation in patients aged 0-18 years with osteogenesis imperfecta.

Keywords: Mobility; Occupational therapy; Osteogenesis imperfecta; Physiotherapy; Rehabilitation.

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Ethics approval and consent to participate

Not applicable.

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Not applicable.

Competing interests

The authors declare that they have no competing interests.

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Figures

**Fig. 2**
Proposed ICF based concept of rehabilitation adapted to children and adolescents with OI

**Fig. 3**
List of assessments used for children and adolescents with OI. ** are validated or specially developed for OI

See this image and copyright information in PMC

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