Skip to main content
Top
Gepubliceerd in: Quality of Life Research 2/2013

01-03-2013

Determinants of quality of life in children with chronic somatic disease: pilot data from the GapS Questionnaire

Auteurs: Bryn D. Webb, Maru Barrera, Joseph Beyene, Manuel Carcao, Denis Daneman, Irene Elliott, Grace W. K. Gong, Ilana J. Halperin, Sarah Lord, Heather Melville, Unni G. Narayanan, Sylvia Ota, Melinda Solomon, Lillian Sung, Nancy L. Young, Mary Zachos, Brian M. Feldman

Gepubliceerd in: Quality of Life Research | Uitgave 2/2013

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

Abstract

Purpose

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.

Methods

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.

Results

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”.

Conclusions

Physical health items were not as important as social and psychological determinants of QoL in our pilot sample.
Bijlagen
Alleen toegankelijk voor geautoriseerde gebruikers
Literatuur
1.
go back to reference Eiser, C., & Morse, R. (2001). The measurement of quality of life in children: Past and future perspectives. Journal of Developmental and Behavioral Pediatrics, 22(4), 248–256.PubMedCrossRef Eiser, C., & Morse, R. (2001). The measurement of quality of life in children: Past and future perspectives. Journal of Developmental and Behavioral Pediatrics, 22(4), 248–256.PubMedCrossRef
2.
go back to reference Gill, T. M., & Feinstein, A. R. (1994). A critical appraisal of the quality of quality-of-life measurements. Journal of the American Medical Association, 272(8), 619–626.PubMedCrossRef Gill, T. M., & Feinstein, A. R. (1994). A critical appraisal of the quality of quality-of-life measurements. Journal of the American Medical Association, 272(8), 619–626.PubMedCrossRef
3.
go back to reference The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Social Science & Medicine 41(10), 1403–1409 (1995). The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Social Science & Medicine 41(10), 1403–1409 (1995).
4.
go back to reference 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., & Krueger, A. B. (2006). Developments in the measurement of subjective well-being. The Journal of Economic Perspectives, 20(1), 3–24.CrossRef
5.
go back to reference Hemmingsson, H., & Jonsson, H. (2005). An occupational perspective on the concept of participation in the International Classification of Functioning, Disability and Health–some critical remarks. American Journal of Occupational Therapy, 59(5), 569–576.PubMedCrossRef Hemmingsson, H., & Jonsson, H. (2005). An occupational perspective on the concept of participation in the International Classification of Functioning, Disability and Health–some critical remarks. American Journal of Occupational Therapy, 59(5), 569–576.PubMedCrossRef
6.
go back to reference 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., & 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.
8.
go back to reference 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. 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.
9.
go back to reference Stinson, J. N., Stevens, B. J., Feldman, B. M., Streiner, D., McGrath, P. J., Dupuis, A., et al. (2008). Construct validity of a multidimensional electronic pain diary for adolescents with arthritis. Pain, 136(3), 281–292.PubMedCrossRef Stinson, J. N., Stevens, B. J., Feldman, B. M., Streiner, D., McGrath, P. J., Dupuis, A., et al. (2008). Construct validity of a multidimensional electronic pain diary for adolescents with arthritis. Pain, 136(3), 281–292.PubMedCrossRef
10.
go back to reference 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 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
11.
go back to reference Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care, 37(2), 126–139.PubMedCrossRef Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care, 37(2), 126–139.PubMedCrossRef
12.
go back to reference Landgraf, J. M., Maunsell, E., Speechley, K. N., Bullinger, M., Campbell, S., Abetz, L., et al. (1998). Canadian-French, German and UK versions of the Child Health Questionnaire: Methodology and preliminary item scaling results. Quality of Life Research, 7(5), 433–445.PubMedCrossRef Landgraf, J. M., Maunsell, E., Speechley, K. N., Bullinger, M., Campbell, S., Abetz, L., et al. (1998). Canadian-French, German and UK versions of the Child Health Questionnaire: Methodology and preliminary item scaling results. Quality of Life Research, 7(5), 433–445.PubMedCrossRef
13.
go back to reference Ravens-Sieberer, U., & Bullinger, M. (1998). Assessing health-related quality of life in chronically ill children with the German KINDL: First psychometric and content analytical results. Quality of Life Research, 7(5), 399–407.PubMedCrossRef Ravens-Sieberer, U., & Bullinger, M. (1998). Assessing health-related quality of life in chronically ill children with the German KINDL: First psychometric and content analytical results. Quality of Life Research, 7(5), 399–407.PubMedCrossRef
14.
go back to reference Detmar, S. B., Bruil, J., Ravens-Sieberer, U., Gosch, A., & Bisegger, C. (2006). The use of focus groups in the development of the KIDSCREEN HRQL questionnaire. Quality of Life Research, 15(8), 1345–1353.PubMedCrossRef Detmar, S. B., Bruil, J., Ravens-Sieberer, U., Gosch, A., & Bisegger, C. (2006). The use of focus groups in the development of the KIDSCREEN HRQL questionnaire. Quality of Life Research, 15(8), 1345–1353.PubMedCrossRef
15.
go back to reference 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 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
16.
go back to reference Spieth, L. E., & Harris, C. V. (1996). Assessment of health-related quality of life in children and adolescents: An integrative review. Journal of Pediatric Psychology, 21(2), 175–193.PubMedCrossRef Spieth, L. E., & Harris, C. V. (1996). Assessment of health-related quality of life in children and adolescents: An integrative review. Journal of Pediatric Psychology, 21(2), 175–193.PubMedCrossRef
17.
go back to reference Jenney, M. E. M., & Campbell, S. (1997). Measuring quality of life. Archives of Disease in Childhood, 77(4), 347–350.PubMedCrossRef Jenney, M. E. M., & Campbell, S. (1997). Measuring quality of life. Archives of Disease in Childhood, 77(4), 347–350.PubMedCrossRef
18.
go back to reference 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. 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.
19.
go back to reference 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. 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.
20.
go back to reference 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 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
21.
go back to reference 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., 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
22.
go back to reference Brunner, H. I., Maker, D., Grundland, B., Young, N. L., Blanchette, V., Stain, A. M., et al. (2003). Preference-based measurement of health-related quality of life (HRQL) in children with chronic musculoskeletal disorders (MSKDs). Medical Decision Making, 23(4), 314–322.PubMedCrossRef Brunner, H. I., Maker, D., Grundland, B., Young, N. L., Blanchette, V., Stain, A. M., et al. (2003). Preference-based measurement of health-related quality of life (HRQL) in children with chronic musculoskeletal disorders (MSKDs). Medical Decision Making, 23(4), 314–322.PubMedCrossRef
23.
go back to reference 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. 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.
24.
go back to reference Michalos, A. C. (1985). Multiple discrepancies theory (MDT). Social Indicators Research, 16(4), 347–413.CrossRef Michalos, A. C. (1985). Multiple discrepancies theory (MDT). Social Indicators Research, 16(4), 347–413.CrossRef
25.
go back to reference Calman, K. C. (1984). Quality of life in cancer patients—An hypothesis. Journal of Medical Ethics, 10(3), 124–127.PubMedCrossRef Calman, K. C. (1984). Quality of life in cancer patients—An hypothesis. Journal of Medical Ethics, 10(3), 124–127.PubMedCrossRef
26.
go back to reference 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 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
27.
go back to reference 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 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
28.
go back to reference 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. 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.
29.
go back to reference 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. 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.
30.
go back to reference 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 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
31.
go back to reference 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. 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.
32.
go back to reference 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. 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.
33.
go back to reference Dew, T. H., & Scott, E. (1994). Adolescents’ perceived quality of life: An exploratory investigation. Journal of School Psychology, 32(2), 185–199.CrossRef Dew, T. H., & Scott, E. (1994). Adolescents’ perceived quality of life: An exploratory investigation. Journal of School Psychology, 32(2), 185–199.CrossRef
34.
go back to reference Dupuis, L. L., Milne-Wren, C., Cassidy, M., Barrera, M., Portwine, C., Johnston, D. L., et al. (2010). Symptom assessment in children receiving cancer therapy: The parents’ perspective. Supportive Care in Cancer, 18(3), 281–299.PubMedCrossRef Dupuis, L. L., Milne-Wren, C., Cassidy, M., Barrera, M., Portwine, C., Johnston, D. L., et al. (2010). Symptom assessment in children receiving cancer therapy: The parents’ perspective. Supportive Care in Cancer, 18(3), 281–299.PubMedCrossRef
35.
go back to reference Huebner, S. E. (1991). Correlates of life satisfaction in children. School Psychology Quarterly, 6(1), 103–111.CrossRef Huebner, S. E. (1991). Correlates of life satisfaction in children. School Psychology Quarterly, 6(1), 103–111.CrossRef
36.
go back to reference DiNapoli, P. P., & Murphy, D. (2002). The marginalization of chronically ill adolescents. The Nursing Clinics of North-America, 37(3), 565–572.PubMedCrossRef DiNapoli, P. P., & Murphy, D. (2002). The marginalization of chronically ill adolescents. The Nursing Clinics of North-America, 37(3), 565–572.PubMedCrossRef
37.
go back to reference Shute, R. H., & Walsh, C. (2005). Adolescents with chronic illnesses: School absenteeism, perceived peer aggression, and loneliness. Scientific World Journal, 5, 535–544.PubMedCrossRef Shute, R. H., & Walsh, C. (2005). Adolescents with chronic illnesses: School absenteeism, perceived peer aggression, and loneliness. Scientific World Journal, 5, 535–544.PubMedCrossRef
Metagegevens
Titel
Determinants of quality of life in children with chronic somatic disease: pilot data from the GapS Questionnaire
Auteurs
Bryn D. Webb
Maru Barrera
Joseph Beyene
Manuel Carcao
Denis Daneman
Irene Elliott
Grace W. K. Gong
Ilana J. Halperin
Sarah Lord
Heather Melville
Unni G. Narayanan
Sylvia Ota
Melinda Solomon
Lillian Sung
Nancy L. Young
Mary Zachos
Brian M. Feldman
Publicatiedatum
01-03-2013
Uitgeverij
Springer Netherlands
Gepubliceerd in
Quality of Life Research / Uitgave 2/2013
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-012-0159-x

Andere artikelen Uitgave 2/2013

Quality of Life Research 2/2013 Naar de uitgave