Identifying exceptional cystic fibrosis care services: combining statistical process control with focus groups

Abstract

Background: The Cystic Fibrosis (CF) Registry collects clinical data on all patients attending specialist CF centres in the UK. These data have been used to make comparisons between centres on key outcomes such as forced expiratory volume in 1 second (FEV Objectives: To explore whether or not using statistical ‘process control’ charts that move away from league tables and adjusting for case mix (age, where appropriate; sex; CF genotype; pancreatic sufficiency; and socioeconomic status) could identify exceptional CF care services in terms of clinically meaningful outcomes. Then, using insight from patients and clinicians on what structures, processes and policies are necessary for delivering good CF care, to explore whether or not care is associated with observed differences in outcomes. Design: Cross-sectional analyses. Setting: Specialist CF centres in the UK. Participants: Patients aged ≥ 6 years attending specialist CF centres and clinicians at these centres. Main outcome measures: FEV Data sources: Annual reviews taken from the UK CF Registry (2007–15). Results: We studied FEV Limitations: Our data analyses suggest that differences in intravenous antibiotic usage may be associated with centre-level outcomes; this needs to be explored further in partnership with the centres. Our survey of centre directors yielded a low response, making it difficult to gain useful knowledge to inform further discussions with sites. Conclusions: Our findings confirm that the CF Registry can be used to identify differences in clinical outcomes between centres and that case mix might explain some of these differences. As such, adjustment for case mix is essential when trying to understand how and why centres differ from the mean. Future work: Future work will involve exploring with clinicians how care is delivered so that we can understand associations between care and outcomes. Patients will also be asked for their perspectives on the care they receive. Funding: The National Institute for Health Research Health Services and Delivery Research programme.