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Gepubliceerd in:
22-10-2024
Health-related quality of life in 205 children with arthrogryposis multiplex congenita
Auteurs: Shahrzad Nematollahi, Emmanouil Rampakakis, Michael Amara, Reggie C. Hamdy, Frank Rauch, Lauren C. Hyer, Michelle A. James, Haluk Altiok, Ellen Raney, Jonathan Pellett, Cary Mielke, Sarah B. Nossov, Sena Tavukcu, Philip F. Giampietro, Noémi Dahan-Oliel
Gepubliceerd in: Quality of Life Research | Uitgave 1/2025
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Abstract
Purpose
Arthrogryposis multiplex congenita (AMC) describes a heterogeneous group of rare congenital conditions. Health-related quality of life (HRQL) may be reduced in AMC due to broadly heterogeneous physical impairments and participation limitations. This study described HRQL in children and youth with AMC, compared HRQL between child self- and parent-proxy reports, and identified factors associated with better/worse HRQL.
Methods
Data on 205 children with AMC (age 8–21 years) from a North American AMC registry across eight hospital sites was used. HRQL was assessed cross-sectionally using the Patient Reported Outcome Measurement Information System (PROMIS) and European Quality of Life-5 Dimensions-Youth-3 Levels (EQ-5D-Y-3 L) by self-report, parent proxy-report or both.
Results
Mean child-reported PROMIS T-scores were significantly lower than the normal mean for the Upper Extremity (mean = 33.0) and Mobility (mean = 37.2) but in the normal range for Pain Interference (mean = 46.6) and Peer Relationships (mean = 51.7). A lot of problems in EQ-5D-Y-3 L was reported by 37% in Feeling Worried/ Sad/ Unhappy, 46% in Having Pain/Discomfort, 50% in Doing Usual Activities, 56% in Mobility, and 57% in Looking After Myself. Compared to child-report, parents reported significantly worse PROMIS T-scores and higher problems in EQ-5D domains. Wheelchair use, being small for gestational age, prolonged hospitalization after birth, increased number of orthopedic surgeries, and caregiver’s stress were associated with lower HRQL scores.
Conclusion
Findings indicate the importance of considering both the child’s and parents’ reports of HRQL, and to provide multimodal interventions that focus on the effect of childhood and parental characteristics to promote HRQL among children with AMC.
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Metagegevens
- Titel
- Health-related quality of life in 205 children with arthrogryposis multiplex congenita
- Auteurs
-
Shahrzad Nematollahi
Emmanouil Rampakakis
Michael Amara
Reggie C. Hamdy
Frank Rauch
Lauren C. Hyer
Michelle A. James
Haluk Altiok
Ellen Raney
Jonathan Pellett
Cary Mielke
Sarah B. Nossov
Sena Tavukcu
Philip F. Giampietro
Noémi Dahan-Oliel
- Publicatiedatum
- 22-10-2024
- Uitgeverij
- Springer New York
- Gepubliceerd in
-
Quality of Life Research
/ Uitgave 1/2025
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649 - DOI
- https://doi.org/10.1007/s11136-024-03808-8
