Pulmonary function outcomes for assessing cystic fibrosis care

•We used Epidemiologic Study of Cystic Fibrosis data to evaluate pulmonary outcomes.•Slope of lung function decline was not better than annual values for benchmarking.•Annual FEV1 % predicted associated most closely with clinical practice patterns.•Future individual patient lung function decline was not related to site rankings.•Only 35–50% of high ranking sites based on FEV1 remained high over three years.

BackgroundAssessing cystic fibrosis (CF) patient quality of care requires the choice of an appropriate outcome measure. We looked systematically and in detail at pulmonary function outcomes that potentially reflect clinical practice patterns.MethodsEpidemiologic Study of Cystic Fibrosis data were used to evaluate six potential outcome variables (2002 best FVC, FEV1, and FEF25–75 and rate of decline for each from 2000 to 2002). We ranked CF care sites by outcome measure and then assessed any association with practice patterns and follow-up pulmonary function.ResultsSites ranked in the top quartile had more frequent monitoring, treatment of exacerbations, and use of chronic therapies and oral corticosteroids. The follow-up rate of pulmonary function decline was not predicted by site ranking.ConclusionsDifferent pulmonary function outcomes associate slightly differently with practice patterns, although annual FEV1 is at least as good as any other measure. Current site ranking only moderately predicts future ranking.