title: Evaluation of the American-English Quality of Life in Short Stature Youth (QoLISSY) questionnaire in the United States.
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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. Bullinger@uke.de.
authors.forename: Monika
authors.initials: M
authors.lastname: Bullinger
authors.affiliation: Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. r.sommer@uke.de.
authors.forename: Rachel
authors.initials: R
authors.lastname: Sommer
authors.affiliation: Pfizer Inc., Outcomes Research, San Diego, CA, USA. andreas.m.pleil@pfizer.com.
authors.forename: Andreas
authors.initials: A
authors.lastname: Pleil
authors.affiliation: Nemours Children's Clinic, Jacksonville, FL, USA. nelly.mauras@nemours.org.
authors.forename: Nelly
authors.initials: N
authors.lastname: Mauras
authors.affiliation: Thomas Jefferson University, Philadelphia, USA. judith.ross@jefferson.edu.
authors.forename: Judith
authors.initials: J
authors.lastname: Ross
authors.affiliation: Rady Children's Hospital, San Diego, CA, USA. rnewfield@rchsd.org.|University of San Diego, San Diego, CA, USA. rnewfield@rchsd.org.
authors.forename: Ron
authors.initials: R
authors.lastname: Newfield
authors.affiliation: Goryeb Children's Hospital, Atlantic Health System, Morristown, New Jersey, USA. lawrence.silverman@atlantichealth.org.
authors.forename: Lawrence
authors.initials: L
authors.lastname: Silverman
authors.affiliation: Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. a.rohenkohl@uke.de.
authors.forename: Anja
authors.initials: A
authors.lastname: Rohenkohl
authors.affiliation: Pfizer Inc., Outcomes Research, San Diego, CA, USA. janet.fox@pfizer.com.
authors.forename: Janet
authors.initials: J
authors.lastname: Fox
authors.affiliation: Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. j.quitmann@uke.de.
authors.forename: Julia
authors.initials: J
authors.lastname: Quitmann
mesh_terms: D000293:Adolescent; D000328:Adult; D001827:Body Height; D002648:Child; D004393:Dwarfism, Pituitary / Q000523:psychology*; D005060:Europe; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D011594:Psychometrics / Q000295:instrumentation*; D011788:Quality of Life / Q000523:psychology*; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires; D014481:United States