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- Title
Health-related quality of life of children and adolescents with osteogenesis imperfecta: a cross-sectional study using PedsQL™.
- Authors
Vanz, Ana Paula; van de Sande Lee, Juliana; Pinheiro, Bruna; Zambrano, Marina; Brizola, Evelise; da Rocha, Neusa Sicca; Schwartz, Ida Vanessa D.; de Souza Pires, Maria Marlene; Félix, Têmis Maria; Félix, Têmis Maria
- Abstract
<bold>Background: </bold>Osteogenesis imperfecta (OI) is a disorder of bone formation leading to low mineral density and fractures. Children and adolescents with OI require periodic medical follow up, corrective surgery, drug therapy and physical therapy, as well as specific daily care practices. In addition, they have an increased incidence of fractures, which require immobilization and cause severe discomfort and short-term disability. This study evaluated the health-related quality of life of children and adolescents with OI in two reference centers for OI treatment in southern Brazil.<bold>Methods: </bold>In this prospective cross-sectional study, the Pediatric Quality of Life Inventory (PedsQLTM) was applied in two university-affiliated reference centers for OI treatment in southern Brazil. Children and adolescents aged ≥ 5 years with clinical diagnoses of OI were included. Clinical data and socioeconomic status was evaluated.<bold>Results: </bold>The sample consisted of 52 children and adolescents with OI (aged 5-17 years); 26 (50%) participants with type I OI, 13 (25%) type IV, 12 (23.1 %) type III, and 1 (1.9%) type V OI. Physical and social functioning domains differed significantly according to clinical presentation of OI with lowest scores in the severe type (OI type III). Pain seems to be the variable that is most associated with impact on the PedsQL domains.<bold>Conclusions: </bold>Overall, this study revealed differences in physical functioning and social functioning in relation to OI clinical presentation. These results reinforcing the importance of the clinical management of these patients with the aim of functional improvement and importance of pain control.
- Subjects
BRAZIL; OSTEOGENESIS imperfecta; QUALITY of life; DISEASES in teenagers; DRUG therapy; SOCIOECONOMIC factors; MENTAL health; COMPARATIVE studies; HEALTH status indicators; LONGITUDINAL method; RESEARCH methodology; MEDICAL cooperation; QUESTIONNAIRES; RESEARCH; RESEARCH funding; EVALUATION research; CROSS-sectional method; PSYCHOLOGY
- Publication
BMC Pediatrics, 2018, Vol 18, p1
- ISSN
1471-2431
- Publication type
journal article
- DOI
10.1186/s12887-018-1077-z