ICEECE2012 Poster Presentations Growth hormone IGF axis - basic (23 abstracts)
Assessing the quality of life of children and adolescents with short stature: development and psychometric testing of the QOLISSY: instrument
J. Quitmann 1 , M. Bullinger 1 , J. Chaplin 6 , A. Rohenkohl 1 , H. Wollmann 3 , E. Mimoun 7 , A. Pleil 2 , M. Herdman 4 & M. Power 5
1University Medical Center Hamburg-Eppendorf, Hamburg, Germany; 2Outcomes Research Pfizer Incorporated, San Diego, California, USA; 3Pfizer GmbH, Tübingen, Germany, 4Insight Consulting and Research S.L., Barcelona, Spain, 5University of Edinburgh Morningside Park Royal Edinburgh Hospital, Edinburgh, UK, 6University of Gothenburg, Gothenburg, Sweden, 7Hopital Des Enfants, Toulouse, France.
In children whose height is substantially below norms, behavioural and emotional problems can be experienced. When evaluating the outcomes of treatments or making treatment decisions, health related quality of life (HrQoL) should be taken into consideration. At present, no standardised HrQoL instrument for short stature youth exists. Through consensus building in five countries, the objective of this study was to develop and psychometrically test a growth-related HrQoL instrument for use in clinical and epidemiologic research.
The target population consists of short stature children (height <−2 SDS) with a diagnosis of GHD/ISS, treated/untreated with GH. Children (8–12) and adolescents (13–18) were included as well as their parents and parents of children between 4 and 7 years. The project followed international instrument development guidelines and a patient-centred methodology. Focus groups eliciting statements about HrQoL, cognitive debriefing, pilot testing and a field test with a retest of the eventual questionnaire were conducted simultaneously in all five countries. Both qualitative and quantitative analyses were carried out.
Following item generation through focus groups with a total of 196 participants, 124 items for children and 156 for parents were included in a pilot test with cognitive debriefing. Statistical analysis of the pilot test results identified the psychometric properties of the instrument. A total of 336 families participated in the field test. Of these, 162 completed a re-test questionnaire. Further item reduction was performed using differential item functioning and structural equation modelling. The final questionnaire consists of a 3-domain core structure with 21 items, the full questionnaire being 49 items for children in six domains and 65 items for parents across eight domains. The questionnaire demonstrated good criterion and construct validity. In addition the questionnaire has good face validity and has been shown to provide reliable results over time.
Declaration of interest: The authors declare that there is no conflict of interest that could be perceived as prejudicing the impartiality of the research project.
Funding: This work was supported, however funding details unavailable.
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Endocrine Abstracts
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