PEDSQL 4.0 in Children with Osteogenesis Imperfecta After the Covid-19 Pandemic

Dyatiara Wulandari¹, Mohammad Faizi^2*, Tri Wahyu Martanto³, Nur Rochmah²

Abstract

Background: Osteogenesis Imperfecta (OI) is an autosomal dominant genetic disorder caused by mutations in the COL1A1 and COL1A2 genes, resulting in brittle bones and an increased risk of fractures. Patients with OI often experience acute and chronic pain, which significantly reduces their quality of life (QoL). During the COVID-19 pandemic, social distancing policies limited patient access to healthcare services. Consequently, therapy for OI patients during the first year of the pandemic decreased, further negatively impacting their QoL. Methods: This study is a qualitative descriptive research with a cross-sectional approach. The sample consisted of OI patients aged 2–18 years. A total of 26 patients were included based on the following inclusion criteria: OI patients receiving care at the Pediatric Endocrinology Clinic of Dr. Soetomo Hospital, and parents who were able to communicate with the researchers and complete the questionnaire. Patients treated in the PICU were excluded. The variables studied included parents’ age, parents’ educational background, children’s gender, bisphosphonate or vitamin D therapy, and COVID-19 history. Results: Most patients were aged 8–12 years (34.61%) and were male (57.7%). The majority of parents were aged 15–40 years (57.7%). OI patients who received bisphosphonate or vitamin D therapy had better overall quality of life (QoL) scores compared to those who did not receive treatment. However, the average overall QoL scores were particularly low in the domain of physical functioning. Conclusion: The quality of life of Osteogenesis Imperfecta patients after the COVID-19 pandemic at Dr. Soetomo Hospital, Surabaya, remains low.

Keywords

osteogenesis imperfecta; pediatric quality of life 4.0 (PedsQL 4.0); covid-19.

Cite This Article

Wulandari, D., Faizi, M.m Martanto, T. W., Rochmah, N. (2024). PEDSQL 4.0 in Children with Osteogenesis Imperfecta After the Covid-19 Pandemic. International Journal of Scientific Advances (IJSCIA), Volume 5| Issue 6: Nov-Dec 2024, Pages 1506-1511, URL: https://www.ijscia.com/wp-content/uploads/2024/12/Volume5-Issue6-Nov-Dec-No.760-1506-1511.pdf

Volume 5 | Issue 6: Nov – Dec 2024