The BSPAR/ARMA Standards of Care (SOC) for children and young people with JIA received international recognition and are intended to facilitate clinical audit in JIA and drive service improvement. BSPAR secured an HQIP project grant to develop a tool suitable for national audit which would enable evaluation of service delivery standards against clinical outcomes (disease activity) and patient reported outcome measures (PROMS) and patient experience measures (PREMS).
To develop a tool suitable for national clinical audit of JIA.
(1) To inform service specification and delivery measures, candidate audit questions were derived from several sources (BSPAR/ARMA Standards of Care, clinical commissioning, BSPAR Clinical Affairs Committee, Scottish Paediatric and Adolescent Rheumatology Network). Corresponding data items were identified for each candidate question. The HQIP JIA Audit Expert Group (21 members) advised on whether the candidate questions should be prioritised.
(2) Candidate disease activity measures for inclusion in the audit dataset were identified through a literature search. The Expert Group considered the candidate measures using a nominal group consensus approach, and two further measures in an on-line Delphi decision process.
(3) The BSPAR Parent Group identified potential topics for inclusion in PROMS and PREMS. These were grouped into categories and compared with existing validated questionnaires to identify the most suitable validated measure.
(1) 18 candidate service specification and delivery questions were identified, corresponding to 40 data items. Questions will be prioritised.
(2) 19 candidate disease activity measures were identified (12 single and 7 composite measures) in the literature search. Nominal group consensus was achieved on inclusion in the audit of the JADAS or JADAS3 composite disease activity measure and presence/absence of uveitis. The presence/absence of sacroiliitis (enthesitis related JIA only) and the sJADAS composite measure (under development; systemic JIA only) were included from the Delphi process.
(3) 14 PROMS categories (40 topics) were identified and could be addressed by using the validated CHU9D and PANAS tools together. The 9 PREMS categories (63 topics) correspond most closely to the validated NRAS PREMS tool.
Substantial progress has been made towards developing an audit tool. After approval by BSPAR membership, the tool will be integrated with CAPTURE-JIA which, following a pilot phase, should be routinely collected with the ultimate goal of integration into electronic patient records.