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

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 parti...

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Bibliographic Details
Published in:Quality of life research 2013-03, Vol.22 (2), p.339-349
Main Authors: Webb, Bryn D., Barrera, Maru, Beyene, Joseph, Carcao, Manuel, Daneman, Denis, Elliott, Irene, Gong, Grace W. K., Halperin, Ilana J., Lord, Sarah, Melville, Heather, Narayanan, Unni G., Ota, Sylvia, Solomon, Melinda, Sung, Lillian, Young, Nancy L., Zachos, Mary, Feldman, Brian M.
Format: Article
Language:English
Subjects:
Adolescent
Bias
Bone surgery
Canada
Child
Child health services
Child, Preschool
Children
Children & youth
Childrens health
Chronic Disease
Chronic diseases
Chronic illnesses
Decision making
Diabetes
Disabled Children
Endocrinology
Female
Gastroenterology
Happiness
Hospitals
Humans
Infant
Male
Medicine
Medicine & Public Health
Parent-Child Relations
Parents
Parents & parenting
Parents - psychology
Pediatrics
Peer Group
Pilot Projects
Public Health
Quality of life
Quality of Life - psychology
Quality of Life Research
Questionnaires
Reproducibility of Results
Rheumatology
Sickness Impact Profile
Sociology
Surveys and Questionnaires
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Summary: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.
ISSN:0962-9343
1573-2649
DOI:10.1007/s11136-012-0159-x