Background: Osteogenesis imperfecta (OI) is a common chronic illness with increasing prevalence. Coronavirus disease 2019 (COVID-19) and large society restriction policies in Indonesia cause problems and might affect the quality of life (QoL) of children with OI. Objective: To evaluate determinant factors that affect OI children's QoL pre and during the first year of the COVID-19 pandemic. Method: This was a cross-sectional study design conducted in the Pediatric Endocrinology Outpatient Clinic, Dr. Soetomo Hospital, Surabaya, Indonesia, during the COVID-19 pandemic in 2020 to assess the patient’s QoL. This study used a diagnostic group with questionnaires. The instrument included the Pediatric Quality of Life Inventory 4.0 Generic Score, a standardized interview questionnaire comprising questions on the participant characteristics and determinant factors pre and during the COVID-19 pandemic. Analysis of determinant factors pre and during the pandemic used McNemar. Correlation between determinant factors and QoL used linear regression for physical and emotional dimensions and logistic regression for social, school, and total score. Result: Of the 22 children with OI, 19 had fear of visiting the hospital (p < 0.001), and 16 had obstacles to visiting the hospital (p < 0.01). The determinant factors for taking calcium and/or vitamin D supplementation pre and during the COVID-19 pandemic affected school functioning (p = 0.015) and the total score (p = 0.027). Conclusion: The significant risk factors pre and during COVID-19 were fear of and obstacles to visiting the hospital. Supplementation of calcium and/or vitamin D pre and during the COVID-19 pandemic significantly impacted school functioning and the total score.
BACKGROUND: Osteogenesis imperfecta (OI) is a chronic illness caused by a connective tissue disorder that may lead to frequent fractures. Therefore, it may influence the quality of life (QoL). The study on QoL among children with OI during the coronavirus disease-19 (COVID-19) pandemic is still limited. AIM: This study aims to evaluate QoL before and during the COVID-19 pandemic in children with OI. METHODS: This cross-sectional study took place in the Pediatric Endocrinology Outpatient Clinic at Dr. Soetomo General Hospital, Surabaya, in 2020. The pre-pandemic data came from 2019 medical records. The questionnaire used was the Pediatric Quality of Life Inventory (PedsQL) 4.0 generic core. Twenty-two patients joined the study; 11/22 of them were girls. RESULTS: The mean age, fracture, and frequency of zoledronic acid treatment were 6.9 years old, 2.5×/year, and 7.1×/year, respectively. The PedsQL comparisons before and during the first year of the COVID-19 pandemic in each dimension were: Physical (49.57 vs. 42.76; p = 0.001), emotional (63.41 vs. 54.54; p = 0.001), social (58.86 vs. 53.86; p = 0.015), and school functioning (66.13 vs. 56.74; p = 0.001), respectively. The most affected dimension was school functioning (mean difference (minimum–maximum): (−9.39) (−14.28–[−4.49]), whereas the physical, emotional, and social functioning were 6.81 (3.43–10.19), 8.86 (5.06–12.67), and −5.00 (−8.93–(−1.07)), respectively. CONCLUSION: The QoL in children with OI during the COVID-19 pandemic was worst, especially in the school functioning dimension. Online consultation options may be beneficial to improving the QoL.
Osteogenesis Imperfecta (OI) or commonly referred to as brittle bone disease is a congenital connective tissue formation disorder characterized by bone fragility, osteopenia, skin disorders, blue sclera, dentinogenesis imperfecta (DI), and hearing loss. The diagnosis of Osteogenesis Imperfecta is based on history, clinical examination, lumbar bone density, bone biochemistry and radiographic findings. Diagnosis of osteogenesis imperfecta can be difficult and some primary skeletal disorders can be mixed with osteogenesis imperfecta. Management of OI requires a multidisciplinary approach such as endocrinologists, pediatricians, orthopedic surgeons, dentists, medical rehabilitation specialists, geneticists, psychologists, and occupational therapists. Bisphosphonate therapy has been shown to be effective in reducing pain, fracture frequency, and disability. Medical services such as bisphosphonate treatment and rehabilitation in individuals with OI have the long-term goal of optimizing the health and well-being of bone fragility and deformity.
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