A preliminary quality of life questionnaire-bronchiectasis: A patient-reported outcome measure for bronchiectasis

Alexandra L. Quittner, Kristen K. Marciel, Matthias A. Salathe, Anne E. O'Donnell, Mark H. Gotfried, Jonathan S. Ilowite, Mark L. Metersky, Patrick A. Flume, Sandra A. Lewis, Matthew McKevitt, A. Bruce Montgomery, Thomas G. O'Riordan, Alan F. Barker

Research output: Contribution to journalArticlepeer-review

40 Scopus citations

Abstract

BACKGROUND: The Quality of Life Questionnaire-Bronchiectasis (QOL-B) is the first diseasespecific, patient-reported outcome measure for patients with bronchiectasis. Content validity, cognitive testing, responsivity to open-label treatment, and psychometric analyses are presented. METHODS: Reviews of literature, existing measures, and physician input were used to generate the initial QOL-B. Modifications following preliminary cognitive testing (N 5 35 patients with bronchiectasis) generated version (V) 1.0. An open-ended patient interview study (N 5 28) provided additional information and was content analyzed to derive saturation matrices, which summarized all disease-related topics mentioned by each participant. This resulted in QOL-B V2.0. Psychometric analyses were carried out using results from an open-label phase 2 trial, in which 89 patients were enrolled and treated with aztreonam for inhalation solution. Responsivity to open-label treatment was observed. Additional analyses generated QOL-B V3.0, with 37 items on eight scales: respiratory symptoms; physical, role, emotional, and social functioning; vitality; health perceptions; and treatment burden. For each scale, scores are standardized on a 0-to-100-point scale; higher scores indicate better health-related quality of life. No total score is calculated. A final cognitive testing study (N 5 40) resulted in a minor change to one social functioning scale item (QOL-B V3.1). RESULTS: Content validity, cognitive testing, responsivity to open-label treatment, and initial psychometric analyses supported QOL-B items and structure. CONCLUSIONS: This interim QOL-B is a promising tool for evaluating the efficacy of new therapies for patients with bronchiectasis and for measuring symptoms, functioning, and quality of life in these patients on a routine basis. A final psychometric validation study is needed and is forthcoming. TRIAL REGISTRY: ClinicalTrials.gov; No.: NCT00805025; URL: www.clinicaltrials.gov

Original languageEnglish (US)
Pages (from-to)437-448
Number of pages12
JournalCHEST
Volume146
Issue number2
DOIs
StatePublished - Aug 2014

ASJC Scopus subject areas

  • Pulmonary and Respiratory Medicine
  • Critical Care and Intensive Care Medicine
  • Cardiology and Cardiovascular Medicine

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