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The psychometric evaluation of the quality of life in short stature youth (QoLISSY) instrument for German children born small for gestational age

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Abstract

Purpose

This study aimed to validate the disease-specific “quality of life in short stature youth (QoLISSY)-instrument” that assessesQuery the health-related quality of life (HrQoL) in German children and adolescents diagnosed as small for gestational age (SGA) in a patient and parent report.

Methods

The psychometric performance of the German version of the QoLISSY questionnaire was examined in terms of reliability and validity in 65 SGA families (17 child reports/64 parent reports) and compared to the psychometric performance of the original European QoLISSY dataset of over 200 children with growth hormone deficiency and idiopathic short stature (ISS).

Results

The analysis yielded psychometrically favorable results with excellent reliability and acceptable discriminant validity. The instrument’s operating characteristics were comparable to the results of the original European QoLISSY data. In the parent- as well as child report, children with SGA had lower HrQoL scores than children with ISS. Convergent validity was demonstrated by significant correlations between the QoLISSY scales and the generic KIDSCREEN-10 Index.

Conclusion

Psychometric testing suggests that QoLISSY is a promising instrument to assess the HrQoL of young German people with SGA. Both versions (parent- and child report) appear to detect differences between SGA and other conditions (e.g. ISS). QoLISSY can be used in clinical studies, health service research, as well as in practice in children with SGA and their parents. For a cross-cultural application of the instrument in SGA, the tool needs be validated in sufficiently large SGA samples within respective countries.

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Acknowledgements

The QoLISSY prospective project would like to thank the children, parents, and staff from the participating clinical centers, particularly Prof. Dr. Dörr and Dr. Menzel for their participation and contributions. Funding was provided by Pfizer UK.

Author information

Authors and Affiliations

  1. Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Martinistraße 52, 20246, Hamburg, Germany

    R. Sommer, J. Blömeke, M. Bullinger & J. Quitmann

Authors
  1. R. Sommer
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  2. J. Blömeke
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  3. M. Bullinger
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  4. J. Quitmann
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Corresponding author

Correspondence to R. Sommer.

Ethics declarations

Access to the QoLISSY instrument

QoLISSY is a joint initiative between Pfizer Limited and the University Medical Center Hamburg-Eppendorf. Copyright Pfizer Limited all rights reserved. The European QoLISSY instrument, together with comprehensive information of its development and validation process is published in the QoLISSY’s User’s Manual (Pabst Science Publishers, Lengerich, 2013). The Manual, which is available upon request, includes QoLISSY child and parent forms, as well as scoring information (http://www.pfizerpatientreportedoutcomes.com/therapeutic-areas/cv-metabolic/endocrine).

Conflict of interest

This study was sponsored by Pfizer, Inc. RS, JB, MB, and JQ received research funding for the conduct of the study. The authors received no financial support for the development of the manuscript.

Ethical standards

The study has been approved by the appropriate ethics committee and has, therefore, been performed in accordance with the ethical standard laid down in the 1964 Declaration of Helsinki and its later amendments.

Informed consent

Informed consent was obtained from all individual participants included in the study.

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Sommer, R., Blömeke, J., Bullinger, M. et al. The psychometric evaluation of the quality of life in short stature youth (QoLISSY) instrument for German children born small for gestational age. J Endocrinol Invest 41, 1185–1191 (2018). https://doi.org/10.1007/s40618-018-0850-z

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  • DOI: https://doi.org/10.1007/s40618-018-0850-z

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