Title

Evaluation of the American-English Quality of Life in Short Stature Youth (QoLISSY) questionnaire in the United States.

Authors

Monika Bullinger, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Department of Medical Psychology
Rachel Sommer, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Department of Medical Psychology
Andreas Pleil, Pfizer Inc., Outcomes Research, San Diego, CA
Nelly Mauras, Nemours Children's Clinic, Jacksonville, FL
Judith L. Ross, Thomas Jefferson UniversityFollow
Ron Newfield, Rady Children's Hospital; University of San Diego
Lawrence Silverman, Atlantic Health System, Goryeb Children's Hospital
Anja Rohenkohl, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Department of Medical Psychology
Janet Fox, Pfizer Inc., Outcomes Research, San Diego, CA
Julia Quitmann, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Department of Medical Psychology

Document Type

Article

Publication Date

4-2-2015

Comments

This article has been peer reviewed. It was published in: Health and Quality of Life Outcomes.

Volume 13, Issue 1, April 02, 2015, Article number 43.

The published version is available at DOI: 10.1186/s12955-015-0236-2

Copyright © 2015 Bullinger et al.

Abstract

BACKGROUND: The European Quality of Life in Short Stature Youth (QoLISSY) is a novel condition-specific instrument developed to assess health related quality of life (HrQoL) in children/adolescents with short stature from patient and parent perspectives. Study objective was to linguistically validate and psychometrically test the American-English version of the QoLISSY instrument.

METHODS: Upon conversion of the British-English version to American-English, content validity and acceptance of the questionnaire were examined through focus group discussions with cognitive debriefing in 28 children/adolescents with growth hormone deficiency (GHD) or idiopathic short stature (ISS) and their parents. In the subsequent field test with 51 families and a re-test with 25 families the psychometric performance of the American-English version was examined and compared with the original European dataset.

RESULTS: Pilot test results supported the suitability of the American-English version. Good internal consistency with Cronbach's Alpha ranging from 0.84 to 0.97 and high test-re-test reliabilities were observed in the field test. The QoLISSY was able to detect significant differences according to the degree of short stature with higher HrQoL for taller children. Correlations with a generic HrQoL tool support the QoLISSY's concurrent validity. The scale's operating characteristics were comparable to the original European data.

CONCLUSION: Results support that the QoLISSY American-English version is a psychometrically sound short stature-specific instrument to assess the patient- and parent- perceived impact of short stature. The QoLISSY instrument is fit for use in clinical studies and health services research in the American-English speaking population.

Recommended Citation

Bullinger, Monika; Sommer, Rachel; Pleil, Andreas; Mauras, Nelly; Ross, Judith L.; Newfield, Ron; Silverman, Lawrence; Rohenkohl, Anja; Fox, Janet; and Quitmann, Julia, "Evaluation of the American-English Quality of Life in Short Stature Youth (QoLISSY) questionnaire in the United States." (2015). Department of Medical Genetics Faculty Papers. Paper 7.
https://jdc.jefferson.edu/medgenfp/7

PubMed ID

25889818