Factors influencing quality of life in Indonesian children with osteogenesis 
imperfecta

Kwari J. Satriono; Gassani Amalia; Attika Adrianti Andarie; Tjhin Wiguna; Sudung Oloan Pardede; Frida Soesanti; Aman B. Pulungan

doi:10.5114/pedm.2024.142588

eISSN: 2083-8441
ISSN: 2081-237X

Pediatric Endocrinology Diabetes and Metabolism

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Original paper

Factors influencing quality of life in Indonesian children with osteogenesis imperfecta

Kwari J. Satriono

^{1, 2}

,

Gassani Amalia

³

,

Attika Adrianti Andarie

⁴

,

Tjhin Wiguna

⁵

,

Sudung Oloan Pardede

⁶

,

Frida Soesanti

²

,

Aman B. Pulungan

²

Child Health – Paediatric Endocrinology, Tajuddin Chalid Makassar General Hospital, Indonesia
Department of Child Health – Paediatric Endocrinology, Faculty of Medicine Universitas Indonesia, Jakarta, Indonesia
Faculty of Medicine, Universitas Indonesia, Indonesia
Department of Child Health, Faculty of Medicine Universitas Indonesia, Jakarta, Indonesia
Department of Psychiatry – Child and Adolescent Psychiatry, Faculty of Medicine Universitas Indonesia, Indonesia
Department of Child Health – Paediatric Nephrology, Faculty of Medicine Universitas Indonesia, Jakarta, Indonesia

Pediatr Endocrinol Diabetes Metab 2024; 30 (4): 174-182

DOI: https://doi.org/10.5114/pedm.2024.142588

Online publish date: 2025/01/27

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Introduction
Osteogenesis imperfecta (OI), a rare condition, profoundly impacts a child’s life. It leads to mobility issues, deformities from frequent fractures, psychosocial and mental-emotional issues, and, indirectly, financial problems that can compromise quality of life (QoL). Clinical severity, classified as mild-moderate or severe, is linked to the overall disease burden.

Aim of the study
The objective of the study was to determine how QoL in OI patients is associated with physical, mental-emotional, psychosocial, and socioeconomic problems.

Material and methods
We conducted a cross-sectional study using questionnaires (PEDS QL 4.0 for QoL, SDQ for mental-emotional problems, PSC-17 for psychosocial problems, and World Bank for assessing financial problems) on OI patients aged 4–18 years in Jakarta, Indonesia. Both parents and patients filled out the questionnaires.

Results
Fifty subjects participated in this study. Parent-reported QoL was associated with the severity of disease (PR = 3.429, p = 0.029) and there was an association of patient-reported QoL with compliance to bisphosphonate therapy (PR = 3.167, p = 0.043) and short stature (PR = 3.36, p = 0.014). Both parent- and patient-reported QoL were strongly associated with the physical and psychosocial problems domain of the PEDS QL 4.0 (p < 0.001).

Conclusions
Evaluating OI patients should prioritise QoL because more severe OI is associated with more severe QoL problems. No evidence of association was found between OI disease severity and family income.

keywords:

Factors influencing quality of life in Indonesian children with osteogenesis imperfecta

Kwari J. Satriono 1, 2 , Gassani Amalia 3 , Attika Adrianti Andarie 4 , Tjhin Wiguna 5 , Sudung Oloan Pardede 6 , Frida Soesanti 2 , Aman B. Pulungan 2

quality of life, child, osteogenesis imperfecta

Kwari J. Satriono

^{1, 2}

,

Gassani Amalia

³

,

Attika Adrianti Andarie

⁴

,

Tjhin Wiguna

⁵

,

Sudung Oloan Pardede

⁶

,

Frida Soesanti

²

,

Aman B. Pulungan

²