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Health-related quality of life and orthosis use in a Swedish population with arthrogryposis

Artikel i vetenskaplig tidskrift
Författare M. Eriksson
L. Jylli
L. Villard
Anna-Karin Kroksmark
A. Bartonek
Publicerad i Prosthetics and Orthotics International
Volym 42
Nummer/häfte 4
Sidor 402-409
ISSN 0309-3646
Publiceringsår 2018
Publicerad vid Institutionen för neurovetenskap och fysiologi
Sidor 402-409
Språk en
Länkar dx.doi.org/10.1177/0309364618774059
Ämnesord Arthrogryposis multiplex congenita, bracing, lower limb orthotics, orthotics, satisfaction, walking, multiple congenital contractures, diagnostic-approach, version, validity, children, classification, questionnaire, reliability, amyoplasia, etiology, Orthopedics, Rehabilitation
Ämneskategorier Ortopedi

Sammanfattning

Background: Joint contractures are the main characteristics for children with arthrogryposis multiplex congenita. Orthoses are often used to enable or facilitate walking. Objectives: To describe health-related quality of life in children with arthrogryposis multiplex congenita and satisfaction with orthoses in those using orthoses. Methods: A total of 33 children with arthrogryposis multiplex congenita participated in the study. Questionnaires were used which measured health-related quality of life (Child Health Questionnaire-Parent Form and EQ-5D youth), mobility and self-care (Paediatric Evaluation of Disability Inventory) and satisfaction with orthoses (Quebec User Evaluation of Satisfaction with Assistive Technology 2.0). Children were divided into groups based on the use of orthoses: Ort-D were dependent on orthoses for walking, Ort-ND used orthoses but were not dependent on them for walking and Non-Ort did not use orthoses. Results: Children with arthrogryposis multiplex congenita had significantly lower Child Health Questionnaire scores in 9 of 12 subscales compared to healthy controls. The children's reported perceived health with EQ-5D youth did not show any difference between children using orthoses or children using only shoes. Paediatric Evaluation of Disability Inventory showed less mobility in Ort-D than in Non-Ort. In total, both orthosis groups were quite satisfied' with their orthoses. Conclusion: Child Health Questionnaire-physical functioning was lowest in children who were dependent on orthoses (Ort-D) for walking. Both Ort-D and Ort-ND were similar satisfied with their orthoses. Clinical relevance This study contributes to knowledge about health-related quality of life in a group of ambulatory children with arthrogryposis multiplex congenita. For children using orthoses, it is relevant to capture their opinion about their orthoses but a questionnaire specifically for children should be developed.

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