Abstract
Rationale and aimsLung health of people with cystic fibrosis (PwCF) can be preserved by daily use of inhaled therapy. Adherence to inhaled therapy, therefore, provides an important process measure to understand the success of care and can be used as a quality indicator. Defining adherence is problematic, however, since the number of prescribed treatments varies considerably between PwCF. The problem is less pronounced among those with Pseudomonas aeruginosa (PA), for whom at least three daily doses of nebulized therapy should be prescribed and who thus constitute a more homogeneous group. The UK CF Registry provides routine data on PA status, but data are only available 12 months after collection. In this study, we aim to prospectively identify contemporary PA status from historic registry data.MethodUK CF Registry data from 2011 to 2015 for PwCF aged ≥16 was used to determine a pragmatic prediction rule for identifying contemporary PA status using historic registry data. Accuracy of three different prediction rules was assessed using the positive predictive value (PPV). The number and proportion of adults predicted to have PA infection were determined overall and per center for the selected prediction rule. Known characteristics linked to PA status were explored to ensure the robustness of the prediction rule.ResultsHaving CF Registry defined chronic PA status in the two previous years is the selected definition to predict a patient will have PA infection within the current year (population‐level PPV = 96%‐97%, centre level PPV = 85%‐100%). This approach provides a subset of data between 1852 and 1872 patients overall and a range of 8 to 279 patients per center.ConclusionHistoric registry data can be used to contemporaneously identify a subgroup of patients with chronic PA. Since this patient group has a narrower treatment schedule, this can facilitate a better benchmarking of adherence across centers.
Highlights
Cystic fibrosis (CF) is an archetypal long-term condition for which there is as yet no cure, but regular use of preventative therapies can improve health outcomes by reducing the frequency of exacerbations and attenuating lung function decline.[1]
We compared the accuracy of three prediction rules that have been selected from clinical knowledge of factors affecting a patient's Pseudomonas aeruginosa (PA) status, and that can be derived from routinely collected data in the CF Registry: 1. Patients with three or more positive PA samples in the previous year, 2
The routine use of data-logging nebulizers in CF allows the number of nebulizer doses used to be captured accurately at an individual level, but there is uncertainty regarding the method to robustly compare system-level adherence between different CF centers
Summary
Cystic fibrosis (CF) is an archetypal long-term condition for which there is as yet no cure, but regular use of preventative therapies can improve health outcomes by reducing the frequency of exacerbations and attenuating lung function (forced expiratory volume in 1 second, FEV1) decline.[1]. Measuring system-level adherence is important because benchmarking across centers within a community of practice can provide a basis to share strategies for improvement. Various quality improvement (QI) initiatives in CF have transformed the delivery of healthcare, for example, streamlined approaches to managing acute exacerbations and increased prescription of efficacious preventative inhaled therapies.[4] Improving adherence to inhaled therapies is, a logically important target for QI projects. QI projects focused on adherence can compare between and within centers, providing an understanding of the variation of care across UK centers
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
