Quality of Life among Children with Osteogenesis Imperfecta Receiving Bisphosphonate Therapy Before and during the 1st Year of the COVID-19 Pandemic in Dr. Soetomo Hospital, Surabaya
DOI:
https://doi.org/10.3889/oamjms.2023.9885Keywords:
Osteogenesis imperfecta, PedsQL, COVID-19 pandemicAbstract
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.
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Legido-Quigley H, Asgari N, Teo YY, Leung GM, Oshitani H, Fukuda K, et al. Are high-performing health systems resilient against the COVID-19 epidemic? Lancet. 2020;395(10227):848-50. http://doi.org/10.1016/S0140-6736(20)30551-1 PMid:32151326
Palmer K, Monaco A, Kivipelto M, Onder G, Maggi S, Michel JP, et al. The potential long-term impact of the COVID-19 outbreak on patients with non-communicable diseases in Europe: Consequences for healthy ageing. Aging Clin Exp Res. 2020;32(7):1189-94. http://doi.org/10.1007/ s40520-020-01601-4 PMid:32458356
Verma A, Rajput R, Verma S, Balania VK, Jangra B. Impact of lockdown in COVID 19 on glycemic control in patients with type 1 diabetes mellitus. Diabetes Metab Syndr. 2020;14(5):1213-6. http://doi.org/10.1016/j.dsx.2020.07.016 PMid:32679527
Samlani Z, Lemfadli Y, Errami AA, Oubaha S, Krati K. The impact of the COVID-19 pandemic on quality of life and well-being in Morocco. Arch Community Med Public Health. 2021;6(2):130-4.
Forlino A, Marini JC. Osteogenesis imperfecta. Lancet. 2016;387(10028):1657-71. http://doi.org/10.1016/S0140-6736(15)00728-X PMid:26542481
Macovei S, Mandache RŞ. Osteogenesis imperfecta and its consequences on the disabled children’s capacity for effort and movement. Procedia Soc Behav Sci. 2014;117:67-73. http://doi.org/10.1016/j.sbspro.2014.02.180
Brizola E, Shapiro J, Felix T. Pathophysiology and therapeutic options in osteogenesis imperfecta: An update. Res Rep Endocr Disord. 2016;6:17-30. http://doi.org/10.2147/RRED.S96578
Sutthisompohn S, Kusol K. Association between caregivers’ family management and quality of life in children with chronic disease in Southern Thailand. Patient Prefer Adherence. 2021;15:2165-74. http://doi.org/10.2147/PPA.S327553 PMid:34588766
Sillence DO, Senn A, Andks DM. Genetic heterogeneity in osteogenesis imperfecta. J Med Genet. 1979;16(2):101-16. http://doi.org/10.1136/jmg.16.2.101 PMid:458828
Varni JW, Seid M, Kurtin PS. Peds QLTM 4 0: Reliability and validity of the pediatric quality of life inventory TM version 4.0 generic core scales in healthy and patient populations. Med Care. 2001;39:800-12.
Varni JW. Scaling and Scoring of the Pediatric Quality of Life Inventory™ PedsQL™. Lyon: Mapi Research Trust; 1998. Available from: https://www.pedsql.org/score.html [Last accessed on 2022 Mar 01].
Song Y, Zhao D, Li L, Lv F, Wang O, Jiang Y, et al. Health-related quality of life in children with osteogenesis imperfecta: A large- sample study. Osteoporosis Int. 2019;30(2):461-8. http://doi.org/10.1007/s00198-018-4801-5 PMid:30569229
Vanz AP, Lee JV, Pinheiro B, Zambrano M, Brizola M, Brizola E, et al. Health-related quality of life of children and adolescents with osteogenesis imperfecta: A cross-sectional study using PedsQLTM. BMC Pediatr. 2018;18:95. http://doi.org/10.1186/s12887-018-1077-z PMid:29499676
Thompson S, Shakespeare T, Wright MJ. Medical and social aspects of the life course for adults with a skeletal dysplasia: A review of current knowledge. Disabil Rehabil. 2008;30(1):1-12.
Celin MR, Fano V. Osteogenesis imperfecta: Level of independence and of social, recreational and sports participation among adolescents and youth. Arch Argent Pediatr. 2016;114(3):248-51. http://doi.org/10.5546/aap.2016.eng.248 PMid:27164338
Vanz AP, Félix TM, da Rocha NS. Quality of life in caregivers of children and adolescents with Osteogenesis imperfecta. Health Qual Life Outcomes. 2016;13:41. http://doi.org/10.1186/s12955-015-0226-4 PMid:25889100
Rochmah N, Faizi M, Hisbiyah Y, Triastuti IW, Wicakson G, Endaryanto A, et al. Quality of life differences in pre and post-educational treatment in type 1 diabetes mellitus during COVID-19. Diabetes Metab Syndr Obesity. 2021;14:2905-11. http://doi.org/10.2147/DMSO.S313575 PMid:34234488
Önal G, Güney G, Huri M. Quality of life and occupational performance of children with cancer in the era of the COVID-19 pandemic in terms of rehabilitation. Qual Life Res. 2021;30(10):2783-94. http://doi.org/10.1007/s11136-021-02857-7 PMid:33939075
Van Gorp M, Maurice-Stam H, Teunissen LC, van de Pepperl- van der Meer W, Huussen M, Schouten-van Meeteren AY, et al. No increase in psychosocial stress of Dutch children with cancer and their caregivers during the first months of the COVID-19 pandemic. Pediatr Blood Cancer. 2021;68(2):e28827. http://doi.org/10.1002/pbc.28827 PMid:33251717
Newacheck PW, Strickland B, Shonkoff JP, Perrin JM, McPherson M, Lauver C, et al. An epidemiologic profile of children with special health care needs. Pediatrics. 1998;102:117-23. http://doi.org/10.1542/peds.102.1.117 PMid:9651423
Kabengo S, Munalula-Nkandu E, Munthali JC, Loveness AN, Shula H, et al. The prevalence and characteristics of patients diagnosed with osteogenesis imperfecta at the Zambia Italian Orthopedics Hospital community based Rehabilitation Project. Sci J Public Health. 2015;3:804-7. http://doi.org/10.11648/j.sjph.20150305.40
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Copyright (c) 2023 Rahma Ira Mustikasari, Nur Rochmah, Muhammad Faizi, Irwanto Irwanto (Author)
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