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Assessing the quality of life of health-referred children and adolescents with short stature: development and psychometric testing of the QoLISSY instrument.

Journal article
Authors Monika Bullinger
Julia Quitmann
Mick Power
Michael Herdman
Emmanuelle Mimoun
Kendra Debusk
Eva Feigerlova
Carolina Lunde
Maria Dellenmark-Blom
Dolores Sanz
Anja Rohenkohl
Andreas Pleil
Hartmut Wollmann
John Chaplin
Published in Health and quality of life outcomes
Volume 11
Issue 1
Pages 76
ISSN 1477-7525
Publication year 2013
Published at Institute of Clinical Sciences, Department of Pediatrics
Pages 76
Language en
Keywords Health-related quality of life, Short stature, Growth hormone deficiency, Assessment in children, Idiopathic short stature, Outcomes research, Patient reported outcomes
Subject categories Health Sciences


BACKGROUND: When evaluating the outcomes of treatment in paediatric endocrinology, the health-related quality of life (HrQoL) of the child is to be taken into consideration. Since few self--reported HrQoL instruments exist for children with diagnosed short stature (dSS), the objective of this study was to develop and psychometrically test a targeted HrQoL instrument for use in multinational clinical research. METHODS: The target population were short stature (height < -2 SDS) children and adolescents (age 8--12 and 13--18 years) with a diagnosis of growth hormone deficiency (GHD) or idiopathic short stature (ISS), differing in growth hormone treatment status. Focus group discussions for concept and item generation, piloting of the questionnaire with cognitive debriefing, and instrument field testing with a retest were conducted simultaneously in five countries. After qualitative and preliminary quantitative analyses, psychometric testing of field test data in terms of reliability and validity including, confirmatory factor analyses (CFA) was performed. RESULTS: Following item generation from focus group discussions, 124 items were included in a pilot test with a cognitive debriefing exercise providing preliminary feedback on item and domain operating characteristics. A field test with 268 participants showed high internal consistency reliabilities (alpha 0.82 -- 0.95), good correlations with generic measures (up to r = .58), significant known group differences (e.g. in height: F = 32, df 244, p < 0.001) and an acceptable CFA model fit suggesting construct validity of the three-domain core structure with 22 items, supplemented by three mediator domains with 29 items. CONCLUSIONS: The QoLISSY questionnaire is a promising step forward in assessing the impact of dSS on HrQoL. It is based on items generated from the subjective experience of short stature children referred for endocrine investigation, is validated for use in five languages and it is easy to administer in clinical and research settings.

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