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

被引:0
作者
Brigitte Mueller
Raoul Engelbert
Frances Baratta-Ziska
Bart Bartels
Nicole Blanc
Evelise Brizola
Paolo Fraschini
Claire Hill
Caroline Marr
Lisa Mills
Kathleen Montpetit
Verity Pacey
Miguel Rodriguez Molina
Marleen Schuuring
Chantal Verhille
Olga de Vries
Eric Hiu Kwong Yeung
Oliver Semler
机构
[1] University of Cologne,Unireha
[2] Center of Prevention and Rehabilitation,ACHIEVE, Center for Applied Research, Faculty of Health
[3] University of Cologne,Department of Rehabilitation, Academic Medical Centre
[4] Children’s Hospital,Medical Genetics Service
[5] University of Applied Sciences Amsterdam,National Resource center for rare disorders. Part of the National Advisory Unit on Rare Disorders (NKSD)
[6] University of Amsterdam,Bristol Royal Hospital for Children
[7] Amsterdam Movement Sciences,Child development and exercise center, Wilhelmina´s Children Hospital
[8] Hospital for Special Surgery,undefined
[9] Children’s Hospital,undefined
[10] Hospital de Clinicas de Porto Alegre,undefined
[11] Sunnaas Rehabilitation Hospital,undefined
[12] IRCCS Eugenio Medea,undefined
[13] Sheffield Children’s NHS Foundation Trust,undefined
[14] University Hospitals Bristol NHS Foundation Trust,undefined
[15] Shriners Hospital for Children,undefined
[16] The Children’s Hospital at Westmead,undefined
[17] Macquarie University,undefined
[18] AHUCE and Fundacion AHUCE,undefined
[19] University Medical Center Utrecht,undefined
[20] University of Leuven,undefined
[21] The University of Hong Kong,undefined
来源
Orphanet Journal of Rare Diseases | / 13卷
关键词
Osteogenesis imperfecta; Physiotherapy; Occupational therapy; Mobility; Rehabilitation;
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摘要
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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[1]  
Marini JC(2017)Osteogenesis imperfecta Nat Rev Dis Primers 3 17052-1671
[2]  
Forlino A(2016)Osteogenesis imperfecta Lancet 387 1657-39
[3]  
Bachinger HP(1988)Heterogeneity in osteogenesis imperfecta: clinical and morphological findings Ann N Y Acad Sci 543 30-37
[4]  
Bishop NJ(2005)Osteogenesis imperfecta, current and future medical treatment Am J Med Genet C Semin Med Genet 139C 31-224
[5]  
Byers PH(2011)Fassier-Duval femoral rodding in children with osteogenesis imperfecta receiving bisphosphonates: functional outcomes at one year J Child Orthop 5 217-778
[6]  
Paepe A(2004)Osteogenesis imperfecta in childhood: impairment and disability. A prospective study with 4-year follow-up Arch Phys Med Rehabil 85 772-76
[7]  
Fassier F(2016)Quality of life in osteogenesis imperfecta: a mixed-methods systematic review Am J Med Genet A 170A 62-86
[8]  
Fratzl-Zelman N(2014)Exercício físico na osteogênese imperfeita Acta Fisiátr 21 80-51
[9]  
Kozloff KM(1998)Effects of withdrawal of bracing in matched pairs of children with osteogenesis imperfecta Arch Phys Med Rehabil 79 46-116
[10]  
Krakow D(2008)Physical training in children with osteogenesis imperfecta J Pediatr 152 111-453