Development of the UK Severe Asthma Registry as a performance-monitoring quality improvement platform
Paul E Pfeffer, Thomas Brown, Adriana Kramer Fiala Machado, Mitesh Patel, Sherif Gonem, Pujan H Patel, Elfaith Idris, Dinesh Shrikrishna, Kathryn Prior, Adel H Mansur, Hassan Burhan, Rekha Chaudhuri, Robin Gore, Alexandra M Nanzer, Shamsa Naveed, Ian J Clifton, Thomas Pantin, Shoaib Faruqi, Rahul Shrimanker, Martin Doherty, David J Jackson, Simon Doe, Simon Message, Charlene Redmond, John Busby, Liam G Heaney, Hitasha RupaniThe UK Severe Asthma Registry (UKSAR) was established to facilitate research and quality improvement including performance monitoring across UK severe asthma centres. We here describe its development and refinement for the latter of those objectives. The selection of performance outcome measures for severe asthma clinical outcomes from clinician and patient perspectives, data collection and assessment of clinical variation across severe asthma centres is described. We report on the aim of UKSAR to assess for unwarranted clinical variation in those clinical outcomes between severe asthma centres and discuss the utility of UKSAR and associated registry meetings in addressing clinical variation and providing optimal severe asthma care. After stakeholder consultation, outcomes measures relating to exacerbations, oral corticosteroid exposure, asthma control and quality of life were selected with appropriate case-mix adjustment to help identify unexplained clinical variation. The registry data fields were then modified to collect the required data. Twice-yearly meetings of the registry steering committee were held to discuss data quality. Over 2018–2025 the number of participating centres increased from 17 to 42. To date, baseline data have been entered for 18 473 patients, with data meeting the agreed quality threshold for 12 792 patients. Analysis of variation in outcomes between centres, after case-mix adjustment and allowing for effect of centre size, shows relatively few examples of significant variation in outcomes between centres. Best-practice case studies from high-performing centres are presented. Twice-yearly discussion at registry meetings, attended by representatives from each severe asthma centre, of outcome measures and related research, together with sharing of best practice may explain the relatively low variation in clinical outcomes between centres. However, a limitation of UKSAR is that it cannot evaluate the presence and clinical impact of ‘hidden’ severe asthma not known to specialist services.