Factors influencing quality of life in Indonesian children with osteogenesis imperfecta

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.