Health-related quality of life of children and adolescents with one vs. multiple disabilities – Are there differences from the parents’ perspective?

References

• Arkkila, E., Räsänen, P., Roine, R. P., Sintonen, H., Saar, V., & Vilkman, E. (2009). Health-related quality of life of adolescents with childhood diagnosis of specific language impairment. International Journal of Pediatric Otorhinolaryngology, 73(9), 1288–1296. https://doi.org/10.1016/j.ijporl.2009.05.023
   PubMed Web of Science ®Google Scholar
• Arnaud, C., White-Koning, M., Michelsen, S. I., Parkes, J., Parkinson, K., Thyen, U., Beckung, E., Dickinson, H. O., Fauconnier, J., Marcelli, M., McManus, V., & Colver, A. (2008). Parent-reported quality of life of children with cerebral palsy in Europe. Pediatrics, 121(1), 54–64. https://doi.org/10.1542/peds.2007-0854
   PubMed Web of Science ®Google Scholar
• Baca, C. B., Vickrey, B. G., Hays, R. D., Vassar, S. D., & Berg, A. T. (2010). Differences in child versus parent reports of the child’s health-related quality of life in children with epilepsy and healthy siblings. Value in Health: The Journal of the International Society for Pharmacoeconomics and Outcomes Research, 13(6), 778–786. https://doi.org/10.1111/j.1524-4733.2010.00732.x
   PubMed Web of Science ®Google Scholar
• Barnett, D., Clements, M., Kaplan-Estrin, M., & Fialka, J. (2003). Building new dreams: Supporting parents’ adaptation to their child with special needs. Infants & Young Children, 16(3), 184–200. https://doi.org/10.1097/00001163-200307000-00002
   Web of Science ®Google Scholar
• Bjornson, K. F., & McLaughlin, J. F. (2001). The measurement of health-related quality of life (HRQL) in children with cerebral palsy. European Journal of Neurology, 8(s5), 183–193. https://doi.org/10.1046/j.1468-1331.2001.00051.x
   PubMedGoogle Scholar
• Boulton, M., Haines, L., Smyth, D., & Fielder, A. (2006). Health-related quality of life of children with vision impairment or blindness. Developmental Medicine and Child Neurology, 48(8), 656–661. https://doi.org/10.1017/S0012162206001381
   PubMed Web of Science ®Google Scholar
• Carbone, J. A., Sawyer, M. G., Searle, A. K., & Robinson, P. J. (2007). The health-related quality of life of children and adolescents in home-based foster care. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 16(7), 1157–1166. https://doi.org/10.1007/s11136-007-9227-z
   PubMed Web of Science ®Google Scholar
• Damnjanović, M., Lakić, A., Stevanović, D., Jovanović, A., Jančić, J., Jovanović, M., & Leposavić, L. (2012). Self-assessment of the quality of life of children and adolescents in the child welfare system of Serbia. Vojnosanitetski pregled, 69(6), 469–474. https://doi.org/10.2298/VSP1206469D
   PubMed Web of Science ®Google Scholar
• De Civita, M., Regier, D., Alamgir, A. H., Anis, A. H., FitzGerald, M. J., & Marra, C. A. (2005). Evaluating health-related quality-of-life studies in paediatric populations. Pharmacoeconomics, 23(7), 659–685. https://doi.org/10.2165/00019053-200523070-00003
   PubMed Web of Science ®Google Scholar
• Desideri, L. F., Mingardi, A., Stefanelli, B., Tanzini, D., Bitelli, C., Roentgen, U. R., & Witte, L. P. (2013). Assessing children with multiple disabilities for assistive technology: A framework for quality assurance. Technology and Disability, 25(3), 159–166. https://doi.org/10.3233/TAD-130378
   Google Scholar
• Eiser, C, & Morse, R. (2001). Quality-of-life measures in chronic diseases of childhood. Health Technology Assessment 5(4), 1–157. https://doi.org/10.3310/hta5040.
   PubMedGoogle Scholar
• Evenhuis, H. M., Theunissen, M., Denkers, I., Verschuure, H., & Kemme, H. (2001). Prevalence of visual and hearing impairment in a Dutch institutionalized population with intellectual disability. Journal of Intellectual Disability Research, 45(5), 457–464. https://doi.org/10.1046/j.1365-2788.2001.00350.x
   PubMed Web of Science ®Google Scholar
• Golubović, Š, & Škrbić, R. (2013). Agreement in quality of life assessment between adolescents with intellectual disability and their parents. Research in Developmental Disabilities, 34(6), 1863–1869. https://doi.org/10.1016/j.ridd.2013.03.006
   PubMed Web of Science ®Google Scholar
• Grilli, L., Feldman, D. E., Majnemer, A., Couture, M., Azoulay, L., & Swaine, B. (2006). Associations between a functional independence measure (WeeFIM) and the pediatric quality of life inventory (PedsQL4. 0) in young children with physical disabilities. Quality of Life Research, 15(6), 1023–1031. https://doi.org/10.1007/s11136-006-0041-9
   PubMed Web of Science ®Google Scholar
• Individuals with Disabilities Education Act [IDEA] 2004. Section 300.8(c)(7). Last modified May 25, 2018. U.S. Department of Education: Washington DC. Available from: https://sites.ed.gov/idea/regs/b/a/300.8/c/7 (accessed July 6, 2023).
   Google Scholar
• Karras, H. C., Morin, D. N., Gill, K., Izadi-Najafabadi, S., & Zwicker, J. G. (2019). Health-related quality of life of children with Developmental Coordination Disorder. Research in Developmental Disabilities, 84, 85–95. https://doi.org/10.1016/j.ridd.2018.05.012
   PubMed Web of Science ®Google Scholar
• Krstić, T., Mihić, I., & Branković, J. (2019). “Our story”: Exposition of a group support program for parents of children with developmental disabilities. Child Care in Practice, 27, 1–16. https://doi.org/10.1080/13575279.2019.1664991
   Google Scholar
• Larsen, M., Goemans, A., Baste, V., Wilderjans, T. F., & Lehmann, S. (2021). Predictors of quality of life among youths in foster care-a 5-year prospective follow-up study. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 30(2), 543–554. https://doi.org/10.1007/s11136-020-02641-z
   PubMed Web of Science ®Google Scholar
• Leslie, L. K., Gordon, J. N., Lambros, K., Premji, K., Peoples, J., & Gist, K. (2005). Addressing the developmental and mental health needs of young children in foster care. Journal of Developmental & Behavioral Pediatrics, 26(2), 140–151. https://doi.org/10.1097/00004703-200504000-00011
   PubMed Web of Science ®Google Scholar
• Limbers, C. A., Heffer, R. W., & Varni, J. W. (2009). Health-related quality of life and cognitive functioning from the perspective of parents of school-aged children with Asperger’s syndrome utilizing the PedsqlTM. Journal of Autism and Developmental Disorders, 39(11), 1529–1541. https://doi.org/10.1007/s10803-009-0777-5
   PubMed Web of Science ®Google Scholar
• Lyle, D. (2019). Understanding profound intellectual and multiple disabilities in adults. Routledge.
   Google Scholar
• Majnemer, A., Shevell, M., Law, M., Poulin, C., & Rosenbaum, P. (2008). Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy. Quality of Life Research, 17(9), 1163–1171. https://doi.org/10.1007/s11136-008-9394-6
   PubMed Web of Science ®Google Scholar
• Matza, L., Swensen, A., Flood, E., Secnik, K., & Leidy, N. (2004). Assessment of health-related quality of life in children: A review of conceptual, methodological, and regulatory issues. Value in Health, 7(1), 79–92. https://doi.org/10.1111/j.1524-4733.2004.71273.x
   PubMed Web of Science ®Google Scholar
• Nicola, K., & Watter, P. (2015). Health-related quality of life from the perspective of children with severe specific language impairment. Health and Quality of Life Outcomes, 13(1), 127. https://doi.org/10.1186/s12955-015-0326-1
   PubMedGoogle Scholar
• Oberlander, T. F., O'Donnell, M. E., & Montgomery, C. J. (1999). Pain in children with significant neurological impairment. Journal of Developmental and Behavioral Pediatrics: JDBP, 20(4), 235–243. https://doi.org/10.1097/00004703-199908000-00006
   PubMed Web of Science ®Google Scholar
• Ow, N., Appau, A., Matout, M., & Mayo, N. E. (2021). What is QOL in children and adolescents with physical disabilities? A thematic synthesis of pediatric QOL literature. Quality of Life Research, 30, 1–16. https://doi.org/10.1007/s11136-021-02769-6
   Web of Science ®Google Scholar
• Palermo, T., Long, A., Lewandowski, A., Drotar, D., Quittner, A., & Walker, S. (2008). Evidence-based assessment of health-related quality of life and functional impairment in pediatric psychology. Journal of Pediatric Psychology, 33(9), 983–996. https://doi.org/10.1093/jpepsy/jsn038
   PubMed Web of Science ®Google Scholar
• Perry, J., & Felce, D. (2005). Correlation between subjective and objective measures of outcome in staffed community housing. Journal of Intellectual Disability Research, 49(4), 278–287. https://doi.org/10.1111/j.1365-2788.2005.00652.x
   PubMedGoogle Scholar
• Petry, K., Maes, B., & Vlaskamp, C. (2005). Domains of quality of life of people with profound multiple disabilities: The perspective of parents and direct support staff. Journal of Applied Research in Intellectual Disabilities, 18(1), 35–46. https://doi.org/10.1111/j.1468-3148.2004.00209.x
   Web of Science ®Google Scholar
• Rajendran, V., & Roy, F. G. (2010). Comparison of health related quality of life of primary school deaf children with and without motor impairment. Italian Journal of Pediatrics, 36(1), 75. https://doi.org/10.1186/1824-7288-36-75
   PubMedGoogle Scholar
• Saigal, S., Feeny, D., Furlong, W., Rosenbaum, P., Burrows, E., & Torrance, G. (1994). Comparison of the health-related quality of life of extremely low birth weight children and a reference group of children at age eight years. The Journal of Pediatrics, 125(3), 418–425. https://doi.org/10.1016/S0022-3476(05)83289-5
   PubMed Web of Science ®Google Scholar
• Singhi, P., Jagirdar, S., Khandelwal, N., & Malhi, P. (2003). Epilepsy in children with cerebral palsy. Journal of Child Neurology, 18(3), 174–179. https://doi.org/10.1177/08830738030180030601
   PubMed Web of Science ®Google Scholar
• Skevington, S. M., & McCrate, F. M. (2012). Expecting a good quality of life in health: Assessing people with diverse diseases and conditions using the WHOQOL-BREF. Health Expectations: An International Journal of Public Participation in Health Care and Health Policy, 15(1), 49–62. https://doi.org/10.1111/j.1369-7625.2010.00650.x
   PubMed Web of Science ®Google Scholar
• Szymanski, L., & King, B. H. (1999). Practice parameters for the assessment and treatment of children, adolescents, and adults with mental retardation and comorbid mental disorders. Journal of the American Academy of Child & Adolescent Psychiatry, 38(12), 5S–31S. https://doi.org/10.1016/S0890-8567(99)80002-1
   PubMed Web of Science ®Google Scholar
• Tabachnick, B. G., & Fidell, L. S. (2007). Using multivariate statistics (5th ed.). Allyn & Bacon/Pearson Education.
   Google Scholar
• Thurston, S., Paul, L., Loney, P., Wong, M., & Browne, G. (2010a). The quality of life of a multidiagnosis group of special needs children: Associations and costs. International Journal of Pediatrics. http://www.hindawi.com/journals/ijped/2010/940101/
   Google Scholar
• Thurston, S., Paul, L., Ye, C., Loney, P., Browne, G., Thabane, L., & Rosenbaum, P. (2010b). Interactions among ecological factors that explain the psychosocial quality of life of children with complex needs. International Journal of Pediatrics, 2010, 404687. https://doi.org/10.1155/2010/404687
   PubMedGoogle Scholar
• Tuchman, R., & Rapin, I. (2002). Epilepsy in autism. The Lancet Neurology, 1(6), 352–358. https://doi.org/10.1016/S1474-4422(02)00160-6
   PubMed Web of Science ®Google Scholar
• Turnbull, A. P., Turnbull, H. R., & Wehmeyer, M. L. (2010). Exceptional lives: Special education in toda’'s schools. Merrill.
   Google Scholar
• Varni, J. W., & Burwinkle, T. M. (2006). The PedsQLTM as a patient-reported outcome in children and adolescents with attention-deficit/hyperactivity disorder: A population-based study. Health and Quality of Life Outcomes, 4(1), 26. https://doi.org/10.1186/1477-7525-4-26
   PubMedGoogle Scholar
• Varni, J. W., Burwinkle, T. M., Rapoff, M. A., Kamps, J. L., & Olson, N. (2004). The PedsQL inpediatric asthma: Reliability and validity of the pediatric qualityof life inventory generic core scales and asthma module. Journal of Behavioral Medicine, 27, 297–318. https://doi.org/10.1023/b:jobm.0000028500.53608.2c
   PubMed Web of Science ®Google Scholar
• Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL™ 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5(1), 364. http://doi.org/10.1186/1477-7525-5-43.
   Google Scholar
• Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL 4.0: Reliability and validity of the pediatric quality of life inventory version 4.0 generic core scales in healthy and patient populations. Medical Care, 39(8), 800–812. https://doi.org/10.1097/00005650-200108000-00006
   PubMed Web of Science ®Google Scholar
• Wake, M., Salmon, L., & Reddihough, D. (2003). Health status of Australian children with mild to severe cerebral palsy: Cross-sectional survey using the child health questionnaire. Developmental Medicine and Child Neurology, 45(3), 194–199. https://doi.org/10.1017/s0012162203000379
   PubMed Web of Science ®Google Scholar
• Zijlstra, H. P., & Vlaskamp, C. (2005). The impact of medical conditions on the support of children with profound intellectual and multiple disabilities. Journal of Applied Research in Intellectual Disabilities, 18(2), 151–161. https://doi.org/10.1111/j.1468-3148.2005.00244.x
   Web of Science ®Google Scholar
• Zubčević, S. (2013). Epilepsije u djece sa cerebralnom paralizom. Paediatria Croatica, 57(1), 112–117. http://hpps.kbsplit.hr/hpps-2013/pdf/Dok%2022.pdf
   Google Scholar