Predictors of self-reported health-related quality of life according to the EQ-5D-Y in chronically ill children and adolescents with asthma, diabetes, and juvenile arthritis: longitudinal results
Health-related quality of life (HRQoL) is an important patient-reported outcome in clinical and health research. The EQ-5D-Y assesses child and adolescent HRQoL by five items on mobility, self-care, usual activities, pain/discomfort, and anxiety/depression as well as a visual analogue scale (VAS) on the current health state. This study investigates predictors of self-reported HRQoL according to the EQ-5D-Y in chronically ill children and adolescents using longitudinal data.
Data from the German Kids-CAT study on children and adolescents with asthma, diabetes, and juvenile arthritis gathered over a period of six months were analyzed (n = 310; 7–17 years old; 48% female). Self-, parent-, and pediatrician-reported data were collected from June 2013 to October 2014. Generalized linear mixed models and linear mixed models served to examine effects of socio-demographic as well as disease- and health-specific predictors on the items as well as on the VAS of the EQ-5D-Y.
Ceiling effects for the EQ-5D-Y indicated low burden of disease in the analyzed sample. Longitudinal analyses revealed associations between less health complaints and better HRQoL for all investigated HRQoL domains. Further, age- and gender-specific effects, and associations of better disease control, longer duration of the disease and less mental health problems with better HRQoL were found.
Subjective health complaints and mental health problems should be considered in the care of children and adolescents with asthma, diabetes, and juvenile arthritis. Future research should suggest administering the items of the EQ-5D-Y with five instead of three response options, and investigate HRQoL over a longer period.
KeywordsQuality of life Children Adolescents EQ-5D-Y Chronic illness
We thank all children, adolescents and their parents, who participated in the Kids-CAT study. Further, we thank the study nurses Anja Bünte and Andrea Knaak, as well as all involved pediatricians for their valuable contributions to the Kids-CAT project. Moreover, we thank Dr. Claus Barkmann for statistical advice, as well as all student assistants and interns for their support. The work on the present publication was financially supported by the EuroQol Foundation, but the views expressed by the authors in the present publication do not necessarily reflect the views of the EuroQol Group.
Compliance with Ethical Standards
Conflict of interest
All authors declare that they have no conflict of interests.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
- 3.Nolan, C. M., Longworth, L., Lord, J., Canavan, J. L., Jones, S. E., Kon, S. S., et al. (2016). The EQ-5D-5L health status questionnaire in COPD: validity, responsiveness and minimum important difference. Thorax, 71(6), 493–500. https://doi.org/10.1136/thoraxjnl-2015-207782.CrossRefPubMedPubMedCentralGoogle Scholar
- 6.EuroQolResearchFoundation (2017). Development of the EQ-5D-Y: A child-friendly version of the EQ-5D. http://www.euroqol.org/eq-5d-products/eq-5d-y-youth.html. Accessed 17 October 2017 2017.
- 7.Ravens-Sieberer, U., Wille, N., Badia, X., Bonsel, G., Burstrom, K., Cavrini, G., et al. (2010). Feasibility, reliability, and validity of the EQ-5D-Y: results from a multinational study. Quality of Life Research, 19(6), 887–897. https://doi.org/10.1007/s11136-010-9649-x.CrossRefPubMedPubMedCentralGoogle Scholar
- 9.Burstrom, K., Bartonek, A., Brostrom, E. W., Sun, S., & Egmar, A. C. (2014). EQ-5D-Y as a health-related quality of life measure in children and adolescents with functional disability in Sweden: Testing feasibility and validity. Acta Paediatrica, 103(4), 426–435. https://doi.org/10.1111/apa.12557.CrossRefPubMedGoogle Scholar
- 10.Robles, N., Rajmil, L., Rodriguez-Arjona, D., Azuara, M., Codina, F., Raat, H., et al. (2015). Development of the web-based Spanish and Catalan versions of the Euroqol 5D-Y (EQ-5D-Y) and comparison of results with the paper version. Health Qual Life Outcomes, 13, 72, https://doi.org/10.1186/s12955-015-0271-z.CrossRefPubMedPubMedCentralGoogle Scholar
- 12.Janssens, A., Rogers, M., Gumm, R., Jenkinson, C., Tennant, A., Logan, S., et al. (2016). Measurement properties of multidimensional patient-reported outcome measures in neurodisability: a systematic review of evaluation studies. Developmental Medicine & Child Neurology, 58(5), 437–451. https://doi.org/10.1111/dmcn.12982.CrossRefGoogle Scholar
- 16.Murillo, M., Bel, J., Perez, J., Corripio, R., Carreras, G., Herrero, X., et al. (2017). Health-related quality of life (HRQOL) and its associated factors in children with Type 1 Diabetes Mellitus (T1DM). Bmc Pediatrics, 17(1), 16. https://doi.org/10.1186/s12887-017-0788-x.CrossRefPubMedPubMedCentralGoogle Scholar
- 17.Ravens-Sieberer, U., & Europe, T. K. G. (2006). The KIDSCREEN Questionnaires. Quality of life questionnaires for children and adolescents—Handbook. Lengerich: Papst Science Publisher.Google Scholar
- 18.Meyer-Moock, S., Moock, J., Morgenroth, A., & Kohlmann, T. Comparing responsiveness of the child-friendly version of the EuroQol-questionnaire (EQ-5D-Y) with population specific instruments (KINDL-R and KIDSCREEN-10) in a clinical sample of children and adolescents. 28th Scientific Plenary Meeting of the EuroQol Group, Oxford, September 2011.Google Scholar
- 22.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 Qual Life Outcomes, 5(1), 43.CrossRefPubMedPubMedCentralGoogle Scholar
- 23.Wagner, V. M., Müller–Godeffroy, E., von Sengbusch, S., Häger, S., & Thyen, U. (2005). Age, metabolic control and type of insulin regime influences health-related quality of life in children and adolescents with type 1 diabetes mellitus. European Journal of Pediatrics, 164(8), 491–496.CrossRefPubMedGoogle Scholar
- 30.Naughton, M. J., Ruggiero, A. M., Lawrence, J. M., Imperatore, G., Klingensmith, G. J., Waitzfelder, B., et al. (2008). Health-related quality of life of children and adolescents with type 1 or type 2 diabetes mellitus: SEARCH for Diabetes in Youth Study. Archives of Pediatrics & Adolescent Medicine, 162(7), 649–657.CrossRefGoogle Scholar
- 32.Fischer, K., Barthel, D., Otto, C., Thyen, U., Klein, M., Walter, O., et al. Application of the EQ-5D-Y in a clinical study: How children and adolescents with chronic conditions value HRQoL. 22nd Annual Conference—International Society for Quality of Life Research, Vancouver, BC, October 2015.Google Scholar
- 34.Barthel, D., Fischer, K. I., Nolte, S., Otto, C., Meyrose, A. K., Reisinger, S., et al. (2016). Implementation of the Kids-CAT in clinical settings: a newly developed computer-adaptive test to facilitate the assessment of patient-reported outcomes of children and adolescents in clinical practice in Germany. Quality of Life Research, 25(3), 585–594.CrossRefPubMedGoogle Scholar
- 35.Barthel, D., Otto, C., Nolte, S., Meyrose, A.-K., Fischer, F., Devine, J., et al. (2017). The validation of a computer-adaptive test (CAT) for assessing health-related quality of life in children and adolescents in a clinical sample: study design, methods and first results of the Kids-CAT study. Quality of Life Research, 26, 1105–1117.CrossRefPubMedGoogle Scholar
- 40.Ravens-Sieberer, U., Ottova, V., Hintzpeter, B., Hillebrandt, D., Saier, U., Moeller, N., et al. (2012). Gesundheitsverhalten von Kindern und Jugendlichen: Die WHO-Jugendgesundheitsstudie für Hamburg. [Health behaviour of children and adolescents: The WHO-youth health study for Hamburg (Germany)]. Lengerich: Pabst Verlag.Google Scholar
- 42.Woerner, W., Becker, A., Friedrich, C., Klasen, H., Goodman, R., & Rothenberger, A. (2002). Normierung und Evaluation der deutschen Elternversion des Strengths and Difficulties Questionnaire (SDQ): Ergebnisse einer repräsentativen Felderhebung. [Normal values and evaluation of the German parents’ version of Strengths and Difficulties Questionnaire (SDQ): Results of a representative field study]. Zeitschrift für Kinder- und Jugendpsychiatrie und Psychotherapie, 30, 105–112.CrossRefPubMedGoogle Scholar
- 43.Heck, R. H., Thomas, S. L., & Tabata, L. N. (2012). Multilevel modeling of categorical outcomes using IBM SPSS. New York: Routledge.Google Scholar
- 44.Heck, R. H., Thomas, S. L., & Tabata, L. N. (2014). Multilevel and longitudinal modeling with IBM SPSS (2nd edn.). New York: Routledge.Google Scholar
- 45.Chen, G., Flynn, T., Stevens, K., Brazier, J., Huynh, E., Sawyer, M., et al. (2015). Assessing the health-related quality of life of australian adolescents: An empirical comparison of the child health utility 9D and EQ-5D-Y instruments. Value in Health, 18(4), 432–438. https://doi.org/10.1016/j.jval.2015.02.014.CrossRefPubMedGoogle Scholar
- 46.Scott, D., Ferguson, G. D., & Jelsma, J. (2017). The use of the EQ-5D-Y health related quality of life outcome measure in children in the Western Cape, South Africa: psychometric properties, feasibility and usefulness—a longitudinal, analytical study. Health Qual Life Outcomes. https://doi.org/10.1186/s12955-017-0590-3.PubMedPubMedCentralGoogle Scholar
- 48.Landfeldt, E., Lindgren, P., Bell, C. F., Guglieri, M., Straub, V., Lochmuller, H., et al. (2016). Health-related quality of life in patients with Duchenne muscular dystrophy: a multinational, cross-sectional study. Developmental Medicine and Child Neurology, 58(5), 508–515. https://doi.org/10.1111/dmcn.12938.CrossRefPubMedGoogle Scholar