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

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.

  • Content Type Journal Article
  • Pages 1-11
  • DOI 10.1007/s11136-012-0159-x
  • Authors
    • Bryn D. Webb, Department of Pediatrics and Genetics and Genomic Sciences, Mount Sinai School of Medicine, New York, NY, USA
    • Maru Barrera, Division of Hematology/Oncology, Department of Pediatrics, The Hospital for Sick Children, Toronto, Canada
    • Joseph Beyene, Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Canada
    • Manuel Carcao, Division of Hematology/Oncology, Department of Pediatrics, The Hospital for Sick Children, Toronto, Canada
    • Denis Daneman, Division of Endocrinology, Department of Pediatrics, University of Toronto, Toronto, Canada
    • Irene Elliott, Division of Neurology, Centre for Nursing, The Hospital for Sick Children, Toronto, Canada
    • Grace W. K. Gong, Department of Immunology, Princess Margaret Hospital for Children, Perth, WA, Australia
    • Ilana J. Halperin, Division of Endocrinology and Metabolism, Department of Medicine, University of Toronto, Toronto, Canada
    • Sarah Lord, Department of Pediatrics, The Hospital for Sick Children, University of Toronto, Toronto, Canada
    • Heather Melville, Department of Genetics and Genomic Sciences, Mount Sinai School of Medicine, New York, NY, USA
    • Unni G. Narayanan, Division of Orthopedic Surgery, Department of Surgery, The Hospital for Sick Children, University of Toronto, Toronto, Canada
    • Sylvia Ota, Toronto Public Health, Toronto, Canada
    • Melinda Solomon, Division of Respiratory Medicine, Department of Paediatrics, The Hospital for Sick Children, University of Toronto, Toronto, Canada
    • Lillian Sung, Division of Hematology/Oncology, Department of Pediatrics, The Hospital for Sick Children, Toronto, Canada
    • Nancy L. Young, School of Rural and Northern Health, Laurentian University, Sudbury, Canada
    • Mary Zachos, Division of Gastroenterology and Nutrition, Department of Pediatrics, Faculty of Health Sciences, McMaster University, Hamilton, Canada
    • Brian M. Feldman, Division of Rheumatology, Department of Pediatrics, The Hospital for Sick Children, 555 University Ave, Toronto, ON M5G 1X8, Canada