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Quality of life (QoL) is a ubiquitous yet poorly defined concept; the precise determinants of QoL are rarely identified. We used pilot data from the GapS Questionnaire to investigate the most important determinants of QoL in children with chronic somatic illness.
We enrolled 92 participants including 60 parents and 32 of their children. The sample comprised rheumatology, diabetes, epilepsy, gastroenterology, cystic fibrosis, and day unit patients. Trained interviewers administered the GapS Questionnaire to parents, and to children if ≥10 years. We determined the relative importance of different items for QoL.
Child participants had a mean age of 14.7 years. Children identified “having good friendships”, “being happy most days”, and “getting along with parents” as most important. Parents ranked most highly “being allowed to do all the things you like doing”, “getting told you have done a good job at something”, and “being physically able to do everything you enjoy doing”.
Physical health items were not as important as social and psychological determinants of QoL in our pilot sample.
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The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Social Science & Medicine 41(10), 1403–1409 (1995).
Kahneman, D., & Krueger, A. B. (2006). Developments in the measurement of subjective well-being. The Journal of Economic Perspectives, 20(1), 3–24. CrossRef
Kahneman, D., & Riis, J. (2005). Living, and thinking about it: Two perspectives on life. In F. A. Huppert, B. Kaverne, & N. Baylis (Eds.), The science of well-being (pp. 285–304). London: Oxford University Press.
Kahneman, D. (2010). The riddle of experience vs. memory. [updated 2010 March 2010; cited 2012 February 14, 2012]; Available from: http://www.ted.com/talks/lang/en/daniel_kahneman_the_riddle_of_experience_vs_memory.html.
Kahneman, D. (1999). Objective Happiness. In D. Kahneman, E. Diener, & N. Schwarz (Eds.), Well-being: The foundations of hedonic psychology (pp. 3–25). New York: Russell Sage Foundation.
Feldman, B. M., Grundland, B., McCullough, L., & Wright, V. (2000). Distinction of quality of life, health related quality of life, and health status in children referred for rheumatologic care. The Journal of Rheumatology, 27(1), 226–233. PubMed
Ravens-Sieberer, U., Gosch, A., Rajmil, L., Erhart, M., Bruil, J., Duer, W., et al. (2005). KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Review of Pharmacoeconomics & Outcomes Research, 5(3), 353–364. CrossRef
Park, J., Turnbull, A. P., & Turnbull, H. R. (2002). Impacts of poverty on quality of life in families of children with disabilities. Exceptional Children, 68(2), 151–170.
Babifá-Banaszak, A., Kovafçifá, L., Kovafçevifá, L., Vuletifá, G., Mujkifá, A., & Ebling, Z. (2002). Impact of war on health related quality of life in Croatia: Population study. Croatian Medical Journal, 43, 396–402.
Feldman, B. M., Grundland, B., McCullough, L., & Wright, V. (2000). Distinction of quality of life, health related quality of life, and health status in children referred for rheumatologic care. Journal of Rheumatology, 27(1), 226–233. PubMed
Gong, G. W., Young, N. L., Dempster, H., Porepa, M., & Feldman, B. M. (2007). The Quality of My Life questionnaire: The minimal clinically important difference for pediatric rheumatology patients. Journal of Rheumatology, 34(3), 581–587. PubMed
Gong, G. W. (2007). The Gap Study (GapS) interview–developing a process to determine the meaning and determinants of quality of life in children with arthritis and rheumatic disease. Clic Exp Rheumatol., 25(3), 486–493.
Michalos, A. C. (1985). Multiple discrepancies theory (MDT). Social Indicators Research, 16(4), 347–413. CrossRef
Wewers, M. E., & Lowe, N. K. (1990). A critical review of visual analogue scales in the measurement of clinical phenomena. Research in Nursing & Health, 13(4), 227–236. CrossRef
Tugwell, P., Bombardier, C., Buchanan, W. W., Goldsmith, C. H., Grace, E., & Hanna, B. (1987). The MACTAR Patient Preference Disability Questionnaire–an individualized functional priority approach for assessing improvement in physical disability in clinical trials in rheumatoid arthritis. The Journal of Rheumatology, 14(3), 446–451. PubMed
Law, M., Polatajko, H., Pollock, N., Mccoll, M. A., Carswell, A., & Baptiste, S. (1994). Pilot testing of the Canadian occupational performance measure: Clinical and measurement issues. Behaviour, 17, 44.
Wright, J. G., & Young, N. L. (1997). The patient-specific index: Asking patients what they want. The Journal of Bone and Joint Surgery (American), 79(7), 974–983.
Verhoeven, A. C., Boers, M., & van der Liden, S. (2000). Validity of the MACTAR questionnaire as a functional index in a rheumatoid arthritis clinical trial. The McMaster Toronto Arthritis. The Journal of Rheumatology, 27(12), 2801–2809. PubMed
Wright, J. G., Young, N. L., & Waddell, J. P. (2000). The reliability and validity of the self-reported patient-specific index for total hip arthroplasty*. The Journal of Bone and Joint Surgery (American), 82(6), 829.
Carpenter, L., Baker, G. A., & Tyldesley, B. (2001). The use of the Canadian occupational performance measure as an outcome of a pain management program. Canadian Journal of Occupational Therapy, 68(1), 16–22.
Dew, T. H., & Scott, E. (1994). Adolescents’ perceived quality of life: An exploratory investigation. Journal of School Psychology, 32(2), 185–199. CrossRef
Huebner, S. E. (1991). Correlates of life satisfaction in children. School Psychology Quarterly, 6(1), 103–111. CrossRef
- Determinants of quality of life in children with chronic somatic disease: pilot data from the GapS Questionnaire
Bryn D. Webb
Grace W. K. Gong
Ilana J. Halperin
Unni G. Narayanan
Nancy L. Young
Brian M. Feldman
- Springer Netherlands