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Pediatric Endocrinology Diabetes and Metabolism
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Czynniki wpływające na jakość życia indonezyjskich dzieci z osteogenesis imperfecta

Kwari J. Satriono
1, 2
,
Gassani Amalia
3
,
Attika Adrianti Andarie
4
,
Tjhin Wiguna
5
,
Sudung Oloan Pardede
6
,
Frida Soesanti
2
,
Aman B. Pulungan
2

  1. Child Health – Paediatric Endocrinology, Tajuddin Chalid Makassar General Hospital, Indonesia
  2. Department of Child Health – Paediatric Endocrinology, Faculty of Medicine Universitas Indonesia, Jakarta, Indonesia
  3. Faculty of Medicine, Universitas Indonesia, Indonesia
  4. Department of Child Health, Faculty of Medicine Universitas Indonesia, Jakarta, Indonesia
  5. Department of Psychiatry – Child and Adolescent Psychiatry, Faculty of Medicine Universitas Indonesia, Indonesia
  6. Department of Child Health – Paediatric Nephrology, Faculty of Medicine Universitas Indonesia, Jakarta, Indonesia
Pediatr Endocrinol Diabetes Metab 2024; 30 (4): 174-182
DOI: https://doi.org/10.5114/pedm.2024.142588
Data publikacji online: 2025/01/27
Plik artykułu:
- 0314_Factors influencing (3).pdf  [1.24 MB]
Pobierz cytowanie
 
Metryki PlumX:
 
1. Balkefors V. Osteogenesis imperfecta. In: Balkefors V (ed.). Living with osteogenesis imperfecta. 1st ed. Karolinska Institute, Stockholm 2015; 1–53.
2. Vidal-Ruiz CA, Molina-Botello D, Siller-Nava JL, Vazquez-Vela CC. Osteogenesis imperfecta: clinical presentation, classification and treatment. Revista Mexicana de Ortoped Pediátr 2018; 20: 86–88.
3. Suskauer SJ, Cintas HL, Marini JC, Gerber LH. Temperament and physical performance in children with osteogenesis imperfecta. Pediatrics 2003; 111: E153–E161. doi: 10.1542/peds.111.2.e153.
4. Marzuki NS, Batubara JRL. Osteogenesis imperfecta. In: Tridjaja B, Pulungan A (ed.). Buku ajar endokrinologi anak. 2nd ed. Jakarta: Badan Penerbit IDAI; 2017; 489–500.
5. Christianto GM, Pulungan AB, Wiguna T. [Correlation between clinical severity of osteogenesis imperfecta with behavioral problems in children age 5-12 years]. Jakarta: Indonesia 2017; 5–59. Available at: https://library.fk.ui.ac.id/?p=show_detail&id=23587.
6. Sanjaya NP. [Correlation between clinical severity of osteogenesis imperfecta and the intellectual function of pediatric patients aged 5-12]. Universitas Indonesia, Jakarta; 2017; 5–10.
7. Roughley PJ, Rauch F, Glorieux FH. Osteogenesis imperfecta–clinical and molecular diversity. Eur Cell Mater 2003; 5: 41–47. doi: 10.22203/ecm.v005a04.
8. Van Dijk FS, Sillence DO. Osteogenesis imperfecta: clinical diagnosis, nomenclature and severity assessment [published correction appears in Am J Med Genet A 2015; 167 A: 1178]. Am J Med Genet A 2014;164A: 1470–1481. doi: 10.1002/ajmg.a.36545.
9. Hill C. Osteogenesis imperfecta Quality of Life. In: Hill CL, penyunting. Development of an osteogenesis imperfecta (OI) specific quality of life measure. Volume 1. Sheffield: The University of Sheffiled; 2015; 1–200.
10. Gjergja Juraški R, Turkalj M, Mikula I, Primorac D. Neurologic manifestations and sleep issues in osteogenesis imperfecta. Paediatr Croat 2017; 61: 113–120.
11. Engelbert RH, Gulmans VA, Uiterwaal CS, Helders PJ. Osteogenesis imperfecta in childhood: perceived competence in relation to impairment and disability. Arch Phys Med Rehabil 2001; 82: 943–948. doi:10.1053/apmr.2001.23889.
12. Vanz AP, Félix TM, da Rocha NS, Schwartz IV. Quality of life in caregivers of children and adolescents with Osteogenesis Imperfecta. Health Qual Life Outcomes 2015; 13: 41. doi: 10.1186/s12955-015-0226-4.
13. Murphy A, Howard A, Sochett E, Harrington J. Financial burden in families of children with osteogenesis imperfecta (OI). Bone (Abstracts) 2017; 6: 197.
14. Song Y, Zhao D, Li L, et al. Health-related quality of life in children with osteogenesis imperfecta: a large-sample study. Osteoporos Int. 2019; 30: 461–468. doi: 10.1007/s00198-018-4801-5.
15. Fano V, del Pino M, Rodríguez Celin M, Buceta S, Obregón MG. Osteogénesis imperfecta: estudio de la calidad de vida en los niños [Osteogenesis imperfecta: quality of life in children]. Arch Argent Pediatr 2013; 111: 328–331. doi:10.5546/aap.2013.328.
16. Desai AD, Zhou C, Stanford S, et al. Validity and responsiveness of the pediatric quality of life inventory (PedsQL) 4.0 generic core scales in the pediatric inpatient setting. JAMA Pediatr 2014; 168: 1114–1121. doi: 10.1001/jamapediatrics.2014.1600.
17. Murphy JM, Jellinek M, Milinsky S. The Pediatric Symptom Checklist: validation in the real world of middle school. J Pediatr Psychol 1989; 14: 629–639. doi: 10.1093/jpepsy/14.4.629.
18. Jacobson JH, Pullmann MD, Parker EM, Kerns SEU. Measurement Based Care in Child Welfare-Involved Children and Youth: Reliability and Validity of the PSC-17. Child Psychiatry Hum Dev 2019; 50: 332–345. doi: 10.1007/s10578-018-0845-1.
19. Stone LL, Janssens JM, Vermulst AA, et al. The Strengths and Difficulties Questionnaire: psychometric properties of the parent and teacher version in children aged 4-7. BMC Psychol 2015; 3: 4. doi: 10.1186/s40359-015-0061-8.
20. Pulungan AB, Julia M, Batubara JR, Hermanussen M. Indonesian national synthetic growth charts. Acta Scientific Paediatrics 2018; 1: 20–34.
21. Robinson ME, Rauch D, Glorieux FH, Rauch F. Standardized growth charts for children with osteogenesis imperfecta. Pediatr Res 2023; 94: 1075–1082. doi: 10.1038/s41390-023-02550-0.
22. Mughal Z. Metabolic bone disorder. In: Desai M, Menon P, Bhatia V (ed.). Pediatric Endocrine Disorder. 3rd ed.. University Press, New Delhi 2015; 423–450.
23. Alharbi SA. A Systematic overview of osteogenesis imperfecta. J Mol Biol 2015; 5: 1–9.
24. Seikaly MG, Kopanati S, Salhab N, et al. Impact of alendronate on quality of life in children with osteogenesis imperfecta. J Pediatr Orthop 2005; 25: 786–791. doi: 10.1097/01.bpo.0000176162.78980.ed.
25. Tsimicalis A, Boitor M, Ferland CE, et al. Pain and quality of life of children and adolescents with osteogenesis imperfecta over a bis-phosphonate treatment cycle. Eur J Pediatr 2018; 177: 891–902. doi: 10.1007/s00431-018-3127-926.
26. Szczepaniak-Kubat A, Kurnatowska O, Jakubowska-Pietkiewicz E, Chlebna-Sokół D. Assessment of quality of life of parents of children with osteogenesis imperfecta. Adv Clin Exp Med 2012; 21: 99-104.
27. Hill M, Lewis C, Riddington M, et al. Exploring the impact of Osteogenesis Imperfecta on families: A mixed-methods systematic review. Disabil Health J 2019; 12: 340–349. doi: 10.1016/j.dhjo.2018.12.003.
28. Pulungan A. Global Inequalities: Limited OI Treatment Options in Indonesia. Eurospe 2014; 1.
29. Pulungan A, Batubara J, Tridjaja B, et al. Effect of bisphosphonate treatment in osteogenesis imperfecta children in Cipto Mangunkusumo Hospital Jakarta. Int J Ped Endocrinol 2014; 1: 61.

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