Quality of life of pediatric and adult individuals with osteogenesis imperfecta: a meta-analysis

Aaronson NK, Muller M, Cohen PDA, Essink-Bot M-L, Fekkes M, Sanderman R, Sprangers MAG, te Velde A, Verrips E. Translation, validation, and norming of the Dutch language version of the SF-36 health survey in community and chronic disease populations. J Clin Epidemiol. 1998;51(11):1055–68. https://doi.org/10.1016/S0895-4356(98)00097-3.

Article  CAS  PubMed  Google Scholar 

Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med. 1999;48(8):977–88. https://doi.org/10.1016/S0277-9536(98)00411-0.

Article  CAS  PubMed  Google Scholar 

Arbuckle R, Abetz-Webb L. “Not just little adults”: qualitative methods to support the development of pediatric patient-reported outcomes. Pat: Pat-Cent Outcomes Res. 2013;6(3):143–59. https://doi.org/10.1007/s40271-013-0022-3.

Article  Google Scholar 

Aviles AM, Anderson TR, Davila ER. Child and adolescent social-emotional development within the context of school. Child Adolesc Mental Health. 2006;11(1):32–9. https://doi.org/10.1111/j.1475-3588.2005.00365.x.

Article  Google Scholar 

Aymé S, Schmidtke J. Networking for rare diseases: a necessity for Europe. Bundesgesundheitsblatt: Gesundheitsforschung—Gesundheitsschutz. 2007;50(12):1477–83. https://doi.org/10.1007/s00103-007-0381-9.

Article  PubMed  Google Scholar 

Basch E, Dueck AC, Rogak LJ, Minasian LM, Kelly WK, O’Mara AM, Denicoff AM, Seisler D, Atherton PJ, Paskett E, Carey L, Dickler M, Heist RS, Himelstein A, Rugo HS, Sikov WM, Socinski MA, Venook AP, Weckstein DJ, Schrag D. Feasibility assessment of patient reporting of symptomatic adverse events in multicenter cancer clinical trials. JAMA Oncol. 2017;3(8):1043–50. https://doi.org/10.1001/jamaoncol.2016.6749.

Article  PubMed  PubMed Central  Google Scholar 

Bennett DS, Hersh J, Herres J, Foster J. HIV-related stigma, shame, and avoidant coping: risk factors for internalizing symptoms among youth living with HIV? Child Psychiatry Hum Dev. 2015;47(4):657–64. https://doi.org/10.1007/s10578-015-0599-y.

Article  Google Scholar 

Berglund B, Anne-Cathrine M, Randers I. Dignity not fully upheld when seeking health care: experiences expressed by individuals suffering from Ehlers–Danlos syndrome. Disabil Rehabil. 2009;32(1):1–7. https://doi.org/10.3109/09638280903178407.

Article  Google Scholar 

Berglund B, Pettersson C, Pigg M, Kristiansson P. Self-reported quality of life, anxiety and depression in individuals with Ehlers–Danlos syndrome (EDS): a questionnaire study. BMC Musculoskelet Disord. 2015. https://doi.org/10.1186/s12891-015-0549-7.

Article  PubMed  PubMed Central  Google Scholar 

Betsch TA, Gorodzinsky AY, Finley GA, Sangster M, Chorney J. What’s in a name? Health care providers’ perceptions of pediatric pain patients based on diagnostic labels. Clin J Pain. 2017;33(8):694–8. https://doi.org/10.1097/ajp.0000000000000454.

Article  PubMed  Google Scholar 

Bevans KB, Riley AW, Moon J, Forrest CB. Conceptual and methodological advances in child-reported outcomes measurement. Expert Rev Pharmacoecon Outcomes Res. 2010;10(4):385–96. https://doi.org/10.1586/erp.10.52.

Article  PubMed  PubMed Central  Google Scholar 

Bjorner JB, Damsgaard MT, Watt T, Groenvold M. Tests of data quality, scaling assumptions, and reliability of the danish SF-36. J Clin Epidemiol. 1998;51(11):1001–11. https://doi.org/10.1016/s0895-4356(98)00092-4.

Article  CAS  PubMed  Google Scholar 

Bogart KR, Irvin VL. Health-related quality of life among adults with diverse rare disorders. Orphanet J Rare Dis. 2017. https://doi.org/10.1186/s13023-017-0730-1.

Article  PubMed  PubMed Central  Google Scholar 

Borenstein M, Higgins JPT, Hedges LV, Rothstein HR. Basics of meta-analysis: I2 is not an absolute measure of heterogeneity. Res Synth Methods. 2017;8(1):5–18. https://doi.org/10.1002/jrsm.1230.

Article  PubMed  Google Scholar 

Bösch F, Landolt MA, Baumgartner MR, Zeltner N, Kölker S, Gleich F, Burlina A, Cazzorla C, Packman W, Schwartz VDI, Vieira Neto E, Ribeiro MG, Martinelli D, Olivieri G, Huemer M. Health-related quality of life in paediatric patients with intoxication-type inborn errors of metabolism: analysis of an international data set. J Inherit Metab Dis. 2021;44(1):215–25. https://doi.org/10.1002/jimd.12301.

Article  PubMed  Google Scholar 

Bullinger M. The concept of quality of life in medicine: Its history and current relevance. Zeitschrift Fur Evidenz, Fortbildung Und Qualitat Im Gesundheitswesen. 2014;108(2–3):97–103. https://doi.org/10.1016/j.zefq.2014.02.006.

Article  PubMed  Google Scholar 

Calvert MJ, O’Connor DJ, Basch EM. Harnessing the patient voice in real-world evidence: the essential role of patient-reported outcomes. Nat Rev Drug Discov. 2019;18(10):731–2. https://doi.org/10.1038/d41573-019-00088-7.

Article  CAS  PubMed  Google Scholar 

Carmoy RJD. La maladie des os de verre: handicap ou différence ? Neuropsychiatrie de l’Enfance et de l’Adolescence. 2004;52(6):422–9. https://doi.org/10.1016/j.neurenf.2004.07.004.

Article  Google Scholar 

Cavallo F, Zambon A, Borraccino A, Raven-Sieberer U, Torsheim T, Lemma P, the HBSC Positive Health Group. Girls growing through adolescence have a higher risk of poor health. Qual Life Res. 2006;15(10):1577–85. https://doi.org/10.1007/s11136-006-0037-5.

Article  PubMed  Google Scholar 

Cremeens J, Eiser C, Blades M. Factors influencing agreement between child self-report and parent proxy-reports on the pediatric quality of life inventoryTM 4.0 (PedsQLTM) generic core scales. Health Qual Life Outcomes. 2006. https://doi.org/10.1186/1477-7525-4-58.

Article  PubMed  PubMed Central  Google Scholar 

Cruz LN, de Almeida Fleck MP, Polanczyk CA. Depression as a determinant of quality of life in patients with chronic disease: data from Brazil. Soc Psychiatry Psychiatr Epidemiol. 2010;45(10):953–61. https://doi.org/10.1007/s00127-009-0141-2.

Article  PubMed  Google Scholar 

Dijk FSV, Sillence DO. Osteogenesis imperfecta: clinical diagnosis, nomenclature and severity assessment. Am J Med Genet A. 2014;164(6):1470–81. https://doi.org/10.1002/ajmg.a.36545.

Article  PubMed Central  Google Scholar 

Dogba MJ, Bedos C, Durigova M, Montpetit K, Wong T, Glorieux FH, Rauch F. The impact of severe osteogenesis imperfecta on the lives of young patients and their parents: a qualitative analysis. BMC Pediatr. 2013. https://doi.org/10.1186/1471-2431-13-153.

Article  PubMed  PubMed Central  Google Scholar 

Eiser C, Morse R. Can parents rate their child’s health-related quality of life? Results of a systematic review. Qual Life Res. 2001;10(4):347–57. https://doi.org/10.1023/A:1012253723272.

Article  CAS  PubMed  Google Scholar 

Fegran L, Hall EOC, Uhrenfeldt L, Aagaard H, Ludvigsen MS. Adolescents’ and young adults’ transition experiences when transferring from paediatric to adult care: a qualitative metasynthesis. Int J Nurs Stud. 2014;51(1):123–35. https://doi.org/10.1016/j.ijnurstu.2013.02.001.

Article  PubMed  Google Scholar 

Folkestad L, Hald JD, Canudas-Romo V, Gram J, Hermann AP, Langdahl B, Abrahamsen B, Brixen K. Mortality and causes of death in patients with osteogenesis imperfecta: a register-based nationwide cohort study. J Bone Miner Res. 2016;31(12):2159–66. https://doi.org/10.1002/jbmr.2895.

Article  CAS  PubMed  Google Scholar 

Forestier-Zhang L, Watts L, Turner A, Teare H, Kaye J, Barrett J, Cooper C, Eastell R, Wordsworth P, Javaid MK, Pinedo-Villanueva R. Health-related quality of life and a cost-utility simulation of adults in the UK with osteogenesis imperfecta, X-linked hypophosphatemia and fibrous dysplasia. Orphanet J Rare Dis. 2016;11(1):160. https://doi.org/10.1186/s13023-016-0538-4.

Article  PubMed  PubMed Central  Google Scholar 

Friede T, Röver C, Wandel S, Neuenschwander B. Meta-analysis of few small studies in orphan diseases. Res Synth Methods. 2016;8(1):79–91. https://doi.org/10.1002/jrsm.1217.

Article  PubMed  PubMed Central  Google Scholar 

Gådin KG, Hammarström A. A possible contributor to the higher degree of girls reporting psychological symptoms compared with boys in grade nine? Eur J Pub Health. 2005;15(4):380–5. https://doi.org/10.1093/eurpub/cki097.

Article  Google Scholar 

Gandek B, Ware JE, Aaronson NK, Apolone G, Bjorner JB, Brazier JE, Bullinger M, Kaasa S, Leplege A, Prieto L, Sullivan M. Cross-validation of item selection and scoring for the SF-12 health survey in nine countries. J Clin Epidemiol. 1998;51(11):1171–8. https://doi.org/10.1016/s0895-4356(98)00109-7.

Article  CAS  PubMed  Google Scholar 

Garganta MD, Jaser SS, Lazow MA, Schoenecker JG, Cobry E, Hays SR, Simmons JH. Cyclic bisphosphonate therapy reduces pain and improves physical functioning in children with osteogenesis imperfecta. BMC Musculoskelet Disord. 2018;19(1):344. https://doi.org/10.1186/s12891-018-2252-y.

Article  CAS  PubMed  PubMed Central  Google Scholar 

Gooijer K, Harsevoort AGJ, van Dijk FS, Withaar HR, Janus GJM, Franken AAM. A baseline measurement of quality of life in 322 Adults with osteogenesis imperfecta. JBMR Plus. 2020;4(12):e10416. https://doi.org/10.1002/jbm4.10416.

Article  CAS  PubMed  PubMed Central  Google Scholar 

Hald JD, Folkestad L, Harsløf T, Brixen K, Langdahl B. Health-related quality of life in adults with osteogenesis imperfecta. Calcif Tissue Int. 2017;101(5):473–8. https://doi.org/10.1007/s00223-017-0301-4.

Article  CAS  PubMed  Google Scholar 

Handisides JC, Hollenbeck-Pringle D, Uzark K, Trachtenberg FL, Pemberton VL, Atz TW, Bradley TJ, Cappella E, Nobele SD, Groh GK-T, Hamstra MS, Korsin R, Levine JC, Lindauer B, Liou A, Neal MKM, Markham LW, Morrison T, Mussatto KA, Taylor H. Health-related quality of life in children and young adults with Marfan syndrome. J Pediatrics. 2019;204:250-255.e1. https://doi.org/10.1016/j.jpeds.2018.08.061.

Article  Google Scholar 

Hedges LV, Vevea JL. Estimating effect size under publication bias: small sample properties and robustness of a random effects selection model. J Educ Behav Stat. 1996;21(4):299–332. https://doi.org/10.3102/10769986021004299.

Article  Google Scholar 

Higgins JP, Green S, editors. Cochrane handbook for systematic reviews of interventions. Wiley; 2008. https://doi.org/10.1002/9780470712184.

Book  Google Scholar 

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