Multi-stakeholder validation of an evidence-based core set of quality indicators for IBD in Belgium

Quality indicators assess and can improve care. Previous efforts used different methods to identify quality indicators for inflammatory bowel disease (IBD) care in Belgium. This study aimed to critically evaluate these efforts and establish a validated, multi-stakeholder consensus on an evidence-based quality indicator set.

A focus group with consensus methodology experts (n = 8) evaluated prior exercises (one modified Delphi method and one with a pragmatic approach). Two additional focus groups with healthcare providers (n = 7) and patients (n = 5) reviewed findings and identified missing quality indicators. A consensus meeting (including 3 methodology experts, 4 patients, 2 IBD nurses, 6 IBD physicians) validated the final set.

Participants agreed on the complementary nature of prior exercises but identified limitations, including the need for pre-prioritization, the core team composition, and suboptimal patient involvement. Missing indicators included one patient-reported outcome (mental health) and three patient-reported experience measures (satisfaction with care, patient-gastroenterologist dialogue, and therapy satisfaction). Consensus was reached on 37 indicators: 3 structure, 11 process, and 23 outcome indicators. These covered patient-reported outcomes/experiences, care team and clinic services, hospital service use and survival, care pathways, patient and disease characteristics, medication, steroid use, infection prevention, disease monitoring, and endoscopy guidelines.

Two complementary exercises yielded unique insights into IBD quality indicators. Reflective focus groups and a consensus meeting identified 37 validated quality indicators with broad stakeholder agreement. Future work should focus on translating these quality indicators into clinical practice and assessing feasibility.