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

被引：59

作者：

Mueller, Brigitte ^{[1
,2
]}

Engelbert, Raoul ^{[3
,4
]}

Baratta-Ziska, Frances ^{[5
]}

Bartels, Bart ^{[1
,6
]}

Blanc, Nicole ^{[6
]}

Brizola, Evelise ^{[7
]}

Fraschini, Paolo ^{[9
]}

Hill, Claire ^{[10
]}

Marr, Caroline ^{[10
]}

Mills, Lisa ^{[11
]}

Montpetit, Kathleen ^{[12
]}

Pacey, Verity ^{[13
,14
]}

Molina, Miguel Rodriguez ^{[15
,16
]}

Schuuring, Marleen ^{[17
]}

Verhille, Chantal ^{[18
]}

de Vries, Olga ^{[8
]}

Yeung, Eric Hiu Kwong ^{[19
]}

Semler, Oliver ^{[2
]}

机构：

[1] Univ Cologne, Ctr Prevent & Rehabil, Unireha, Cologne, Germany

[2] Univ Cologne, Childrens Hosp, Kerpenerstr 62, D-50931 Cologne, Germany

[3] Univ Appl Sci Amsterdam, Fac Hlth, Ctr Appl Res, ACHIEVE, Amsterdam, Netherlands

[4] Univ Amsterdam, Acad Med Ctr, Dept Rehabil, Amsterdam Movement Sci, Amsterdam, Netherlands

[5] Hosp Special Surg, Nyc, NY USA

[6] Childrens Hosp, Toulouse, France

[7] Hosp Clin Porto Alegre, Med Genet Serv, Porto Alegre, RS, Brazil

[8] Sunnaas Rehabil Hosp, Natl Advisory Unit Rare Disorders NKSD, Natl Resource Ctr Rare Disorders, Nesodden, Norway

[9] IRCCS Eugenio Medea, Bosisio Parini, LC, Italy

[10] Sheffield Childrens NHS Fdn Trust, Sheffield, S Yorkshire, England

[11] Univ Hosp Bristol NHS Fdn Trust, Bristol Royal Hosp Children, Bristol, Avon, England

[12] Shriners Hosp Children, Montreal, PQ, Canada

[13] Childrens Hosp Westmead, Sydney, NSW, Australia

[14] Macquarie Univ, Sydney, NSW, Australia

[15] AHUCE, Madrid, Spain

[16] Fdn AHUCE, Madrid, Spain

[17] Univ Med Ctr Utrecht, Wilhelminas Children Hosp, Child Dev & Exercise Ctr, Utrecht, Netherlands

[18] Univ Leuven, Leuven, Belgium

[19] Univ Hong Kong, Hong Kong, Hong Kong, Peoples R China

来源：

ORPHANET JOURNAL OF RARE DISEASES | 2018年 / 13卷

关键词：

Osteogenesis imperfecta; Physiotherapy; Occupational therapy; Mobility; Rehabilitation; GENOTYPE-PHENOTYPE CORRELATIONS; FOLLOW-UP; PERCEIVED COMPETENCE; MUSCLE STRENGTH; CHILDHOOD; SCOLIOSIS; IMPAIRMENT; DISABILITY; BONE; SPONDYLODESIS;

D O I：

10.1186/s13023-018-0905-4

中图分类号：

Q3 [遗传学];

学科分类号：

071007 ; 090102 ;

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.

引用

页数：14

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