Evaluation of the american-english quality of life in short stature youth (QoLISSY) questionnaire in the United States

Monika Bullinger, Rachel Sommer, Andreas Pleil, Nelly Mauras, Judith Ross, Ron Newfield, Lawrence Silverman, Anja Rohenkohl, Janet Fox, Julia Quitmann

Research output: Contribution to journalArticle

12 Citations (Scopus)

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.

Original languageEnglish (US)
Article number43
JournalHealth and Quality of Life Outcomes
Volume13
Issue number1
DOIs
StatePublished - Apr 2 2015

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Quality of Life
Surveys and Questionnaires
Health Services Research
Focus Groups
Psychometrics
Growth Hormone
Parents
Population

All Science Journal Classification (ASJC) codes

  • Public Health, Environmental and Occupational Health

Cite this

Bullinger, Monika ; Sommer, Rachel ; Pleil, Andreas ; Mauras, Nelly ; Ross, Judith ; Newfield, Ron ; Silverman, Lawrence ; Rohenkohl, Anja ; Fox, Janet ; Quitmann, Julia. / Evaluation of the american-english quality of life in short stature youth (QoLISSY) questionnaire in the United States. In: Health and Quality of Life Outcomes. 2015 ; Vol. 13, No. 1.
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Evaluation of the american-english quality of life in short stature youth (QoLISSY) questionnaire in the United States. / Bullinger, Monika; Sommer, Rachel; Pleil, Andreas; Mauras, Nelly; Ross, Judith; Newfield, Ron; Silverman, Lawrence; Rohenkohl, Anja; Fox, Janet; Quitmann, Julia.

In: Health and Quality of Life Outcomes, Vol. 13, No. 1, 43, 02.04.2015.

Research output: Contribution to journalArticle

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T1 - Evaluation of the american-english quality of life in short stature youth (QoLISSY) questionnaire in the United States

AU - Bullinger, Monika

AU - Sommer, Rachel

AU - Pleil, Andreas

AU - Mauras, Nelly

AU - Ross, Judith

AU - Newfield, Ron

AU - Silverman, Lawrence

AU - Rohenkohl, Anja

AU - Fox, Janet

AU - Quitmann, Julia

PY - 2015/4/2

Y1 - 2015/4/2

N2 - 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.

AB - 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.

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