title: Systematic review of health-related quality of life measures for children with respiratory conditions.
abstract: Patient-reported outcomes (PROs) are increasingly used in both clinical trials and clinical care to evaluate patient benefits. The purpose of this review was to identify currently available PROs for children with pulmonary conditions and to make recommendations regarding future development and application of these measures. Systematic searches were conducted and disease-specific health-related quality of life (HRQOL) measures, a type of PRO, were identified for asthma, cystic fibrosis (CF), vocal cord dysfunction and sleep-related breathing disorders. Psychometric properties, age-appropriateness, respondent burden and minimal clinically importance difference scores were evaluated in accordance with the Food and Drug Administration guidelines. For both asthma and CF there are several psychometrically sound, well-established measures; however, for vocal cord dysfunction and sleep-related breathing disorders there are no measures children can complete for themselves. In summary, this review indicated that although significant progress has been made, there are still a number of pulmonary conditions for which there is no disease-specific HRQOL measure.
authors.affiliation: University of Miami, 5665 Ponce De Leon Blvd, Coral Gables, FL 33146, USA. aquittner@miami.edu
authors.forename: Alexandra L
authors.initials: AL
authors.lastname: Quittner
authors.forename: Avani
authors.initials: A
authors.lastname: Modi
authors.forename: Ivette
authors.initials: I
authors.lastname: Cruz
mesh_terms: D002648:Child; D003550:Cystic Fibrosis / Q000628:therapy*; D006801:Humans; D017063:Outcome Assessment, Health Care; D011788:Quality of Life; D015203:Reproducibility of Results; D012650:Self Disclosure