Page 68 - Abstract Book KONIKA 18

Endocrinology

O-ENDO-007
Factors Associated to Quality of Life in Children with Osteogenesis Imperfecta

Kwari J. Satriono , Tjhin Wiguna , Sudung O. Pardede , Aman B. Pulungan 1
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Department of Child Health and Department of Psychiatry , Faculty of Medicine, Universitas Indonesia/
Dr. Cipto Mangunkusumo General Hospital, Jakarta, Indonesia
Abstract
Background Osteogenesis Imperfecta (OI) is a rare disease with multiple impact, and it is categorized as
mild-moderate and severe clinical severity level. Children with OI have deformity and mobility disorder due
to multiple and recurrent fractures. They are also facing a lot of psychosocial problems, mental emotional
problems, and also financial problems. In general, it may affect their quality of life (QoL). Studies showed
that clinical severity of OI correlate with disease burden. Objective To asses the QoL and factors associated
to QoL among children with OI. Methods The study was conducted in cross sectional design through online
survey from August to December 2020. The data was obtained by multiple questionnaires (PEDS QL 4.0 for
QoL, SDQ for mental emotional problems, PSC for psychosocial problems and World Bank for assessing
financial problems) to OI patient with age 4-18 years. The analysis was done by using SPSS program for
Windows. Results Fifty research subjects participated in this research. QoL associated to clinical severity of
the disease according to parent report (P=0.029 PR=5.474), bisphosphonate compliance according to children
report (P=0.043 PR=3.167). However, OI clinical severity did not have any association to mental emotional,
psychosocial and financial problems. Moreover, in general QoL among children with OI associated with
physical and psychosocial problems. Conclusion Osteogenesis imperfecta clinical severity associated to low
QoL, Therefore, a program specifically designed to improve QoL among children with OI need to be improved.
Keywords: osteogenesis imperfecta; quality of life; clinical severity

22 KONIKA XVIII Abstract Book