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

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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.

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Most cited references 37

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Bone and muscle: Interactions beyond mechanical.

Marco Brotto, Lynda Bonewald (2015)

The musculoskeletal system is significantly more complex than portrayed by traditional reductionist approaches that have focused on and studied the components of this system separately. While bone and skeletal muscle are the two largest tissues within this system, this system also includes tendons, ligaments, cartilage, joints and other connective tissues along with vascular and nervous tissues. Because the main function of this system is locomotion, the mechanical interaction among the major players of this system is essential for the many shapes and forms observed in vertebrates and even in invertebrates. Thus, it is logical that the mechanical coupling theories of musculoskeletal development exert a dominant influence on our understanding of the biology of the musculoskeletal system, because these relationships are relatively easy to observe, measure, and perturb. Certainly much less recognized is the molecular and biochemical interaction among the individual players of the musculoskeletal system. In this brief review article, we first introduce some of the key reasons why the mechanical coupling theory has dominated our view of bone-muscle interactions followed by summarizing evidence for the secretory nature of bones and muscles. Finally, a number of highly physiological questions that cannot be answered by the mechanical theories alone will be raised along with different lines of evidence that support both a genetic and a biochemical communication between bones and muscles. It is hoped that these discussions will stimulate new insights into this fertile and promising new way of defining the relationships between these closely related tissues. Understanding the cellular and molecular mechanisms responsible for biochemical communication between bone and muscle is important not only from a basic research perspective but also as a means to identify potential new therapies for bone and muscle diseases, especially for when they co-exist. This article is part of a Special Issue entitled "Muscle Bone Interactions".

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Vertebral morphometry in children and adolescents with osteogenesis imperfecta: effect of intravenous pamidronate treatment.

Christof Land, Frank Rauch, Craig F Munns … (2006)

Results in small patient series suggest that cyclical intravenous treatment with pamidronate can lead to reshaping of compressed vertebral bodies in children and adolescents with osteogenesis imperfecta (OI), but more detailed analyses are lacking. In this study of patients with moderate to severe OI (age range 0.1 to 16.7 years), we used vertebral morphometry to longitudinally assess changes in lumbar vertebral shape before (n = 17 patients) and during 2 to 4 years of pamidronate treatment (n = 72 patients). Anterior, posterior and midpoint vertebral heights of lumbar vertebrae L1 to L4 were determined on lateral lumbar spine X-rays and were related to vertebral body length in the antero-posterior direction. Before pamidronate treatment, vertebral body height ratios did not change significantly, but the mean concavity index (defined as the ratio between midpoint and posterior vertebral body heights) decreased by 22% (P = 0.002). Pamidronate treatment was associated with an increase in vertebral height ratio at each of the 12 sites that were analyzed. Consequently, patients who had received pamidronate for an average of 3 years had less compressed vertebrae than a historical control group of patients who had the same OI type, age and sex but who had not received pamidronate. Multiple regression analysis revealed that age was negatively and lumbar spine areal bone mineral density z score was positively associated with vertebral shape at baseline. The main determinant of treatment response was the severity of vertebral deformities at baseline. These results suggest that vertebral deformations worsen in patients with moderate to severe OI who do not receive medical treatment and that pamidronate helps to reverse this trend. In moderate to severe forms of OI, pamidronate should be started as early as possible to treat or to prevent vertebral deformations.

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Quality of life in osteogenesis imperfecta: A mixed-methods systematic review.

M. J. Dogba, N Dahan-Oliel, S Oliel … (2016)

Clinical interventions and research have mostly focused on the orthopedic, genetic, and pharmacological outcomes of individuals with osteogenesis imperfecta (OI), and although quality of life (QoL) has gained recognition as an important patient-outcome, it has received little attention in individuals with OI. This mixed-methods systematic review of the literature included five search engines and identified a total of 212 articles. Once study eligibility was reviewed, 10 studies met the inclusion criteria and were included in this mixed-methods review (9 quantitative and 1 qualitative). Among the 10 included QoL studies, six reported on children with OI, three on adults with OI, and one on the parents of children with OI. Physical QoL in children and adults with OI appears to be less than that of the general population, with individuals with more severe OI types reporting worse QoL. On the other hand, mental and psychosocial QoL is the same or better in individuals with OI than that of the general population. Pain, scoliosis activity limitations and participation restrictions due to decreased function are associated with lower levels of physical QoL. Researchers must agree on a definition of QoL as it relates to OI and use validated measures appropriate for evaluating QoL in OI. Pediatric studies should consider both the child and the parent's QOL perceptions as these may differ. QoL in the adult population should not be dismissed in order to offer proper client-centered interventions throughout the lifespan.

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Author and article information

Contributors

Brigitte Mueller: Brigitte.mueller@unireha-koeln.de

Raoul Engelbert: r.h.h.engelbert@hva.nl

Frances Baratta-Ziska: BarattaZiskaF@HSS.EDU

Bart Bartels: B.Bartels-4@umcutrecht.nl

Nicole Blanc: blancnicole09@gmail.com

Evelise Brizola: evelisebrizola@hotmail.com

Paolo Fraschini: paolofraschini@gmail.com

Claire Hill: Claire.Wagstaff@sch.nhs.uk

Caroline Marr: Caroline.Marr@sch.nhs.uk

Lisa Mills: Lisa.mills@uhbristol.nhs.uk

Kathleen Montpetit: kmontpetit@shrinenet.org

Verity Pacey: verity.pacey@mq.edu.au

Miguel Rodriguez Molina: fisioinfantil@ahuce.org

Marleen Schuuring: M.D.Schuuring@umcutrecht.nl

Chantal Verhille: chantal.verhille@uzleuven.be

Olga de Vries: Olga.deVries@sunnaas.no

Eric Hiu Kwong Yeung: ericyeung1@gmail.com

Oliver Semler:

ORCID: http://orcid.org/0000-0003-0029-7556

+49-221-478 84747 , joerg.semler@uk-koeln.de

Journal

Journal ID (nlm-ta): Orphanet J Rare Dis

Journal ID (iso-abbrev): Orphanet J Rare Dis

Title: Orphanet Journal of Rare Diseases

Publisher: BioMed Central (London )

ISSN (Electronic): 1750-1172

Publication date (Electronic): 10 September 2018

Publication date PMC-release: 10 September 2018

Publication date Collection: 2018

Volume: 13

Electronic Location Identifier: 158

Affiliations

[1 ]ISNI 0000 0000 8580 3777, GRID grid.6190.e, Unireha, , University of Cologne, Center of Prevention and Rehabilitation, ; Cologne, Germany

[2 ]ISNI 0000 0000 8580 3777, GRID grid.6190.e, University of Cologne, Children’s Hospital, ; Kerpenerstraße 62, 50931 Cologne, Germany

[3 ]ISNI 0000000120346234, GRID grid.5477.1, ACHIEVE, Center for Applied Research, Faculty of Health, , University of Applied Sciences Amsterdam, ; Amsterdam, The Netherlands

[4 ]ISNI 0000000084992262, GRID grid.7177.6, Department of Rehabilitation, Academic Medical Centre, , University of Amsterdam, Amsterdam Movement Sciences, ; Amsterdam, The Netherlands

[5 ]ISNI 0000 0001 2285 8823, GRID grid.239915.5, Hospital for Special Surgery, ; NYC, NY, USA

[6 ]ISNI 0000 0004 0638 325X, GRID grid.414018.8, Children’s Hospital, ; Toulouse, France

[7 ]ISNI 0000 0001 0125 3761, GRID grid.414449.8, Medical Genetics Service, , Hospital de Clinicas de Porto Alegre, ; Porto Alegre, Brazil

[8 ]ISNI 0000 0004 0612 1014, GRID grid.416731.6, National Resource center for rare disorders. Part of the National Advisory Unit on Rare Disorders (NKSD), , Sunnaas Rehabilitation Hospital, ; Nesodden, Norway

[9 ]GRID grid.420417.4, IRCCS Eugenio Medea, ; Bosisio Parini (LC), Italy

[10 ]ISNI 0000 0004 0463 9178, GRID grid.419127.8, Sheffield Children’s NHS Foundation Trust, ; Sheffield, UK

[11 ]ISNI 0000 0004 0380 7336, GRID grid.410421.2, Bristol Royal Hospital for Children, , University Hospitals Bristol NHS Foundation Trust, ; Bristol, UK

[12 ]ISNI 0000 0004 0629 1363, GRID grid.415833.8, Shriners Hospital for Children, ; Montreal, Quebec, Canada

[13 ]ISNI 0000 0000 9690 854X, GRID grid.413973.b, The Children’s Hospital at Westmead, ; Sydney, Australia

[14 ]ISNI 0000 0001 2158 5405, GRID grid.1004.5, Macquarie University, ; Sydney, Australia

[15 ]AHUCE and Fundacion AHUCE, Madrid, Spain

[16 ]ISNI 0000000090126352, GRID grid.7692.a, Child development and exercise center, Wilhelmina´s Children Hospital, , University Medical Center Utrecht, ; Utrecht, The Netherlands

[17 ]ISNI 0000 0001 0668 7884, GRID grid.5596.f, University of Leuven, ; Leuven, Belgium

[18 ]ISNI 0000000121742757, GRID grid.194645.b, The University of Hong Kong, ; Hong Kong, China

Author information

Oliver Semler http://orcid.org/0000-0003-0029-7556

Article

Publisher ID: 905

DOI: 10.1186/s13023-018-0905-4

PMC ID: 6131938

PubMed ID: 30201006

SO-VID: 90f75163-13e7-4505-a39f-ef11246cc513

License:

Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

History

Date received : 1 May 2018

Date accepted : 30 August 2018

Funding

Funded by: Care4Brittle bones foundation

Award ID: 2016-0008

Award Recipient : Oliver Semler

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ScienceOpen disciplines: Infectious disease & Microbiology

Keywords: osteogenesis imperfecta,physiotherapy,occupational therapy,mobility,rehabilitation

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ScienceOpen disciplines: Infectious disease & Microbiology

Keywords: osteogenesis imperfecta, physiotherapy, occupational therapy, mobility, rehabilitation

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

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Most cited references 37

Bone and muscle: Interactions beyond mechanical.

Vertebral morphometry in children and adolescents with osteogenesis imperfecta: effect of intravenous pamidronate treatment.

Quality of life in osteogenesis imperfecta: A mixed-methods systematic review.

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