Health-related quality of life of Hungarian children and adolescents with disabilities

Szerzők

  • Katalin Kälbli
  • Judit Gombás
  • Mónika Kaj
  • Anita Király
  • Tamás Csányi

DOI:

https://doi.org/10.31074/gyntf.2022.3.272.290

Kulcsszavak:

Health-related Quality of Life (HQOL), children and adolescents with disabilities, children and adolescents with special educational needs, KIDSCREEN-27

Absztrakt

This study presents a comparative analysis of the HRQOL (health related quality of life) of Hungarian children and adolescents with disabilities. This empirical research was carried out during the academic years of 2016/2017, 2017/2018, and 2018/2019. Gathered via the KIDSCREEN-27 questionnaire, the data provide information on the HRQOL of 2,631 children with typical development (TD) (1,411 boys and 1,220 girls, mean age 14.88±2.68 yrs) and 1,056 children with a disability (diagnosed with special educational needs – SEN) (702 boys and 354 girls, mean age 15.72±2.6 yrs). QOL was examined from various aspects. Results in the various subsamples were first compared to Hungarian reference data. Then, an analysis of variance (ANOVA) was performed to detect differences between the subsamples in the five dimensions of QOL. When comparing the QOL of Hungarian children with SEN to Hungarian reference data, we found that only children within an autism spectrum disorder (ASD) had low HRQOL in the dimension of social support and peers. The comparison of the T-values characterising the HRQOL of the subsamples showed that children with other psychological developmental disorders (OPDD), those with ASD, and children with hearing impairment (HI) experience significantly poorer HRQOL T-values in several dimensions compared to children with TD or other disabilities. The physical well-being of children with OPDD is lower than that of students with TD or a mild intellectual disability (MID). In addition, children with OPDD show significantly lower levels of QOL in the school environment dimension compared to other subsamples (children with physical disabilities /PD/, with MID, or with low vision /LV/). Students with HI or ASD showed lower rates of QOL compared to other subsamples in the dimensions of autonomy and parent relations, social support and peers, and school environment. The lower QOL found in the different dimensions will help experts plan and determine the foci of intervention.

Letöltések

Letölthető adat még nem áll rendelkezésre.

Hivatkozások

Arias, V. B., Gómez, L. E., Morán, L. M., Alcedo, Á. M., Monsalve, A. & Fontanil, Y. (2018). Does quality of life differ for children with autism spectrum disorder and intellectual disability compared to peers without autism? Journal of Autism and Developmental Disorders, 48(1), 123–136. https://doi.org/10.1007/s10803-017-3289-8

Baars, R. M., Atherton, C. I., Koopman, H. M., Bullinger, M., Power, M. & the DISABKIDS group (2005). The European DISABKIDS project: development of seven condition-specific modules to measure health related quality of life in children and adolescents. Health and quality of life outcomes, 3(1), 70. https://doi.org/10.1186/1477-7525-3-70

Biggs, E. E. & Carter, . W. (2016). Quality of life for transition-age youth with autism or intellectual disability. Journal of autism and developmental disorders, 46(1), 190–204. https://doi.org/10.1007/s10803-015-2563-x

Calley, A., Williams, S.,Reid, S., Blair, E., Valentine, J., Girdler, S. & Elliott, C. (2012). A comparison of activity, participation and quality of life in children with and without spastic diplegia cerebral palsy. Disability and rehabilitation, 34(15), 1306–1310. https://doi.org/10.3109/09638288.2011.641662

Chiang, H.-M. & Wineman, I. (2014). Factors associated with quality of life in individuals with autism spectrum disorders: A review of literature. Research in autism spectrum disorders, 8(8), 974-986. https://doi.org/10.1016/j.rasd.2014.05.003

Clark, B. G., Magill-Evans, J. E. & Koning, C. J. (2015). Youth with autism spectrum disorders: Self-and proxy-reported quality of life and adaptive functioning. Focus on Autism and Other Developmental Disabilities, 30(1), 57–64. https://doi.org/10.1177/1088357614522289

Collier, J., MacKinlay, D. & Phillips, D. (2000). Norm values for the Generic Children’s Quality of Life Measure (GCQ) from a large school-based sample. Quality of Life Research, 9(6), 617-623. https://doi.org/10.1023/A:1008915700210

De Vries, M. & Geurts, H. (2015). Influence of autism traits and executive functioning on quality of life in children with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(9), 2734–2743. https://doi.org/10.1007/s10803-015-2438-1

Eiser, C. (1997). Children’s quality of life measures. Archives of Disease in Childhood, 77(4), 350-354. https://doi.org/10.1136/adc.77.4.350

Eiser, C. & Morse, R. (2001). A review of measures of quality of life for children with chronic illness. Archives of Disease in Childhood, 84(3), 205–211. https://doi.org/10.1136/adc.84.3.205

Ercsey, I. (2010). Az életminőség mérése. Széchenyi István Egyetem. 1–11. http://kgk.sze.hu/images/dokumentumok/kautzkiadvany2010/ercsey%20ida.pdf

Gómez, L. E., Alcedo, Á., Arias, B., Fontanil, Y., Arias, V. B., Monsalve, A. & Verdugo, M. A. (2016). A new scale for the measurement of quality of life in children with intellectual disability. Research in Developmental disabilities, 53, 399–410. https://doi.org/10.1016/j.ridd.2016.03.005

Gu, X., Chang, M. & Solmon, M. A. (2016). Physical activity, physical fitness, and health-related quality of life in school-aged children. Journal of Teaching in Physical Education, 35(2), 117–126. http://dx.doi.org/10.1123/jtpe.2015-0110

Hu, X., Wang, M. & Fei, X. (2012). Family quality of life of Chinese families of children with intellectual disabilities. Journal of Intellectual Disability Research, 56(1), 30–44. https://doi.org/10.1111/j.1365-2788.2011.01391.x

Ncube, B. L., Perry, A. & Weiss, J. A. (2018). The quality of life of children with severe developmental disabilities. Journal of Intellectual Disability Research, 62(3), 237–244. https://doi.org/10.1111/jir.12460

Kovács, B. (2007). Életminőség – boldogság – stratégiai tervezés. Polgári Szemle, 3(2), 13–29. https://polgariszemle.hu/archivum/30-2007-februar-3-evfolyam-2-szam/161-eletminoseg-boldogsag-strategiai-tervezes

Kullmann, L. (1993). Gondolatok az életminőség értelmezéséről. In Göllesz, V. (Ed.), Életminőség-fejlesztő speciális mozgalmak a fogyatékosságügyben (pp. 5–17). A Szociális Munka Alapítvány Kiadványai..

Kullmann, L. (2010). Az életminőség vizsgálata. In Vekerdy-Nagy, Z. (2010). Rehabilitációs orvoslás (pp. 119–121). Medicina Könyvkiadó Zrt..

Kullmann, L. (2012). A modern rehabilitációs szemléletet tükröző egyéni állapotfelmérő módszer, A funkcióképesség, fogyatékosság és egészség nemzetközi osztályozása (FNO) elméleti és gyakorlati alkalmazásának tapasztalatai. A módszer alkalmazási lehetőségei a mozgássérült emberek rehabilitációjában. Eötvös Loránd Tudományegyetem, Bárczi Gusztáv Gyógypedagógiai Kar. http://www.gurulo.hu/sites/default/files/tanulmanyok/fuzet_5_kullmann.pdf

Jin-Ding, L., Jung, H., Chia-Feng, Y., Shang-Wei, H., Lan-Ping, L., Ching-Hui, L., Mei-Hua, C., Sheng-Ru, W., Cordia, M.C. & Jia-Ling, W. (2009). Quality of life in caregivers of children and adolescents with intellectual disabilities: use of WHOQOL-BREF survey. Research in Developmental Disabilities, 30(6), 1448–1458. https://doi.org/10.1016/j.ridd.2009.07.005

Moyson, T. & Herbert, R. (2012). ‘The overall quality of my life as a sibling is all right, but of course, it could always be better’. Quality of life of siblings of children with intellectual disability: the siblings’ perspectives. Journal of Intellectual Disability Research, 56(1), 87–101. https://doi.org/10.1111/j.1365-2788.2011.01393.x

Nota, L., Ferrari, L., Soresi, S. & Michael, W. (2007). Self-determination, social abilities and the quality of life of people with intellectual disability. Journal of Intellectual Disability Research, 51(11), 850–865. https://doi.org/10.1111/j.1365-2788.2006.00939.x

Oliveira, O., Ribeiro, C., Simões, C. & Pereira, P. (2018). Quality of life of children and adolescents with visual impairment. British Journal of Visual Impairment, 36(1), 42–56. https://doi.org/10.1177/0264619617737123

Papp, Z., Környei, G., Békési, A., Hosszú, D. & Török, S. (2016). Egészséggel összefüggő életminőség három gyermekkori krónikus betegségben. Alkalmazott Pszichológia, 16(3), 79–93. http://ap.elte.hu/wp-content/uploads/2016/11/APA_2016_3_Papp_etal.pdf

Renty, J. & Roeyers, H. (2006). Quality of life in high-functioning adults with autism spectrum disorder: The predictive value of disability and support characteristics. Autism, 10(5), 511–524. https://doi.org/10.1177/1362361306066604

Renwick, R., Fudge, S. & Buga, Z. (2003). Quality of life for children with developmental disabilities: A new conceptual framework. Journal on Developmental Disabilities, 10(1), 107–114.

Roland, L., Fischer, C., Tran, K., Rachakonda, T., Kallogjeri, D. & Lieu, J. (2016). Quality of life in children with hearing impairment: systematic review and meta-analysis. Otolaryngology–Head and Neck Surgery, 155(2), 208–219. https://doi.org/10.1177/0194599816640485

Sabaz, M., Cairns, D. R., Lawson, J. A., Bleasel, A. F. & Bye, A. M. E. (2001). The health-related quality of life of children with refractory epilepsy: a comparison of those with and without intellectual disability. Epilepsia, 42(5), 621–628. https://doi.org/10.1046/j.1528-1157.2001.25200.x

Schalock, R. L., Brown, I., Brown, R., Cummins, R. A., Felce, D., Matikka, L., Keith, K. D. & Parmenter, T. (2002). Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: Report of an international panel of experts. Mental retardation, 40(6), 457–470. https://doi.org/10.1352/0047-6765(2002)040<0457:CMAAOQ>2.0.CO;2

Schalock, R. L., Verdugo, M. A. & Gomez, L. E. (2011). Evidence-based practices in the field of intellectual and developmental disabilities: An international consensus approach. Evaluation and Program Planning, 34(3), 273–282. https://doi.org/10.1016/j.evalprogplan.2010.10.004

Solans, M., Pane, S., Estrada, M.-D., Serra-Sutton, V., Berra, S., Herdman, M., Jordi, A. & Rajmil, L. (2008). Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value in Health, 11(4), 742–764. https://doi.org/10.1111/j.1524-4733.2007.00293.x

Kidscreen Group Europe (2016). The KIDSCREEN Questionnaires. Quality of life questionnaires for children and adolescents. Handbook. 3th edition, Pabst Science Publishers,.

Tompke, B. K. & Ferro, M. A. (2021). Measurement invariance and informant discrepancies of the KIDSCREEN-27 in children with mental disorder. Applied Research in Quality of Life, 16(2), 891–910. https://doi.org/10.1007/s11482-019-09801-5

Utasi, Á. (2007, Ed.). Az életminőség feltételei. MTA Politikai Tudományok Intézete. http://vmek.oszk.hu/04800/04806/04806.pdf

Van der Straaten, T.,Rieffe, C., Soede, W., Netten, A., Dirks, E., Oudesluys-Murphy, A. M., Dekker, F. W., Böhringer, S., Frijns, J. H. M. & DECIBEL Collaborative study group (2020). Quality of life of children with hearing loss in special and mainstream education: A longitudinal study. International Journal of Pediatric Otorhinolaryngology, 128, 109701. https://doi.org/10.1016/j.ijporl.2019.109701

Wallander, J. L, Schmitt, M. & Koot, H. M. (2001). Quality of life measurement in children and adolescents: issues, instruments, and applications. Journal of clinical psychology, 57(4), 571–585. https://doi.org/10.1002/jclp.1029

White-Koning, M., Arnaud, C., Bourdet-Loubère, S., Bazex, H., Colver, A. & Grandjean, H. (2005). Subjective quality of life in children with intellectual impairment–how can it be assessed?. Developmental medicine and child neurology, 47(4), 281–285. https://doi.org/10.1017/s0012162205000526

Wojtkowski, J., Sienkiewicz, D., Okurowska-Zawada, B., Paszko-Patej, G., Konopka, A., Okulczyk, K. & Kułak, W. (2017). Quality of life of children suffering from motor disabilities as evaluated by their parents. Progress in Health Sciences, 7(2), 60–66. https://www.umb.edu.pl/photo/pliki/progress-file/phs/phs_2017_2/60-66_wojtkowski_1.pdf https://doi.org/10.5604/01.3001.0010.7851

WHO=World Health Organization (1997). Measuring quality of life: The World Health Organization quality of life instruments (the WHOQOL-100 and the WHOQOL-BREF). WHOQOL-measuring quality of life. 1–13. https://www.who.int/mental_health/media/68.pdf

Young, B., Rice, H., Dixon-Woods, M., Colver, A. F. & Parkinson, K. (2007). A qualitative study of the health-related quality of life of disabled children. Developmental Medicine & Child Neurology, 49(9), 660–665. https://doi.org/10.1111/j.1469-8749.2007.00660.x

##submission.additionalFiles##

Megjelent

2022-05-07

Hogyan kell idézni

Kälbli, K., Gombás, J., Kaj, M., Király, A., & Csányi, T. (2022). Health-related quality of life of Hungarian children and adolescents with disabilities. Gyermeknevelés Tudományos Folyóirat, 10(2–3), 272–290. https://doi.org/10.31074/gyntf.2022.3.272.290