Assessing the quality of life of health-referred children and adolescents with short stature: development and psychometric testing of the QoLISSY instrument
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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. / Bullinger-Naber, Monika; Quitmann, Julia; Power, Mick; Herdman, Michael; Mimoun, Emmanuelle; DeBusk, Kendra; Feigerlova, Eva; Lunde, Carolina; Dellenmark-Blom, Maria; Sanz, Dolores; Rohenkohl, Anja; Pleil, Andreas; Wollmann, Hartmut; Chaplin, John E.
In: HEALTH QUAL LIFE OUT, Vol. 11, 01.01.2013, p. 76.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
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TY - JOUR
T1 - Assessing the quality of life of health-referred children and adolescents with short stature: development and psychometric testing of the QoLISSY instrument
AU - Bullinger-Naber, Monika
AU - Quitmann, Julia
AU - Power, Mick
AU - Herdman, Michael
AU - Mimoun, Emmanuelle
AU - DeBusk, Kendra
AU - Feigerlova, Eva
AU - Lunde, Carolina
AU - Dellenmark-Blom, Maria
AU - Sanz, Dolores
AU - Rohenkohl, Anja
AU - Pleil, Andreas
AU - Wollmann, Hartmut
AU - Chaplin, John E
PY - 2013/1/1
Y1 - 2013/1/1
N2 - 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 28 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.
AB - 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 28 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.
KW - Adolescent
KW - Child
KW - Dwarfism, Pituitary
KW - Female
KW - Focus Groups
KW - Humans
KW - Male
KW - Pilot Projects
KW - Quality of Life
KW - Questionnaires
KW - Reproducibility of Results
U2 - 10.1186/1477-7525-11-76
DO - 10.1186/1477-7525-11-76
M3 - SCORING: Journal article
C2 - 23648112
VL - 11
SP - 76
JO - HEALTH QUAL LIFE OUT
JF - HEALTH QUAL LIFE OUT
SN - 1477-7525
ER -