Prospectively predicting Pseudomonas aeruginosa infection/s using routine data from the UK cystic fibrosis register

Nikki Totton; Mike Bradburn; Zhe Hui Hoo; Jen Lewis; Daniel Hind; Carla Girling; Elizabeth Shepherd; Julia Nightingale; Thomas Daniels; Jane Dewar; Sophie Dawson; Mary Carroll; Mark Allenby; Frank Edenborough; Rachael Curley; Charlotte Carolan; Martin Wildman

doi:10.1002/hsr2.381

Prospectively predicting Pseudomonas aeruginosa infection/s using routine data from the UK cystic fibrosis register

Health Sci Rep. 2021 Oct 1;4(4):e381. doi: 10.1002/hsr2.381. eCollection 2021 Dec.

Authors

Nikki Totton¹, Mike Bradburn¹, Zhe Hui Hoo^{1

2}, Jen Lewis¹, Daniel Hind¹, Carla Girling¹, Elizabeth Shepherd³, Julia Nightingale³, Thomas Daniels³, Jane Dewar⁴, Sophie Dawson⁴, Mary Carroll³, Mark Allenby³, Frank Edenborough², Rachael Curley², Charlotte Carolan², Martin Wildman²

Affiliations

¹ Clinical Trials Research Unit, School of Health and Related Research University of Sheffield Sheffield UK.
² Sheffield Adult Cystic Fibrosis Centre Sheffield Teaching Hospital NHS Foundation Trust Sheffield UK.
³ Department of Adult Cystic Fibrosis University Hospital Southampton NHS Foundation Trust Southampton UK.
⁴ Wolfson Cystic Fibrosis Centre Nottingham University Hospital NHS Trust Nottingham UK.

Abstract

Rationale and aims: Lung 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.

Method: UK 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.

Results: Having 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.

Conclusion: Historic 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.

Keywords: adherence; cystic fibrosis; outcome; process; quality improvement.