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Title: Cross-Cultural Equivalence of the Patient- and Parent-Reported Quality of Life in Short Stature Youth (QoLISSY) Questionnaire
Authors: Bullinger, Monika 
Quitmann, Julia 
Silva, Neuza 
Rohenkohl, Anja 
Chaplin, John E. 
DeBusk, Kendra 
Mimoun, Emmanuelle 
Feigerlova, Eva 
Herdman, Michael 
Sanz, Dolores 
Wollmann, Hartmut 
Pleil, Andreas 
Power, Michael 
Keywords: Health related quality of life; Short stature; Growth hormone deficiency; Idiopathic short stature; Patient and parent assessment; Outcome research
Issue Date: 2014
Citation: Bullinger, M., Quitmann, J., Silva, N., Rohenkohl, A., Chaplin, J. E., DeBusk, K., Mimoun, E., Feigerlova, E., Herdman, M., Sanz, D., Wollmann, H., Pleil, A., & Power, M. (2014). Cross-cultural equivalence of the patient- and parent-reported Quality of Life in Short Stature Youth (QoLISSY) Questionnaire. Hormone Research in Paediatrics, 82(1), 18-30. doi:10.1159/000358832
Serial title, monograph or event: Hormone Research in Paediatrics
Volume: 82
Issue: 1
Abstract: Background: Testing cross-cultural equivalence of Patient Reported Outcomes requires sufficiently large samples per country, which is difficult to achieve in rare endocrine paediatric conditions. We describe a novel approach to cross-cultural testing of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire in five countries by sequentially Taking-One-Country-Out (TOCO) from the total sample and iteratively comparing the resulting psychometric performance. Methods: Development of the QoLISSY proceeded from focus group discussions over pilot testing to field testing in 268 short statured patients and parents. In exploring cross-cultural equivalence the iterative TOCO technique was used to examine and compare validity, reliability and convergence of QoLISSY patient- and parent-ratings in the field test data set, and to predict QoLISSY scores from clinical, socio-demographic and psychosocial variables. Results: Validity and reliability indicators were satisfactory for each sample after iteratively omitting one country. Comparisons with the total sample revealed cross-cultural equivalence in internal consistency and construct validity for patients and parents, high inter-rater agreement and a substantial proportion of QoLISSY variance explained by predictors. Conclusion: The TOCO technique is a powerful method to overcome problems of country specific testing of PRO instruments. It provides an empirical support to QoLISSY´s cross-cultural equivalence and is recommended for future research.
DOI: 10.1159/000358832
Rights: openAccess
Appears in Collections:FPCEUC - Artigos em Revistas Internacionais

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