Improving Quality of Care in Inflammatory Bowel Disease Through Patients' Eyes: IQCARO Project

Background: Quality improvement is a major topic in inflammatory bowel disease (IBD) care, and measuring quality of care (QoC) is necessary for QoC improvement. Most QoC projects or consensus statements are designed from the health care professional point of view. Having QoC indicators designed for and fully evaluable by patients may provide a key tool for external evaluation of QoC improvement measures. The aim of the IQCARO project was to identify indicators to measure QoC from the IBD patient's point of view. Methods: An extensive review of the literature to identify indicators of QoC was performed; first the identified indicators were reviewed by a steering committee including patients, nurses, IBD specialists, and methodologists. Then 2 focus groups of IBD patients analyzed the QoC indicators to determine whether they could be understood and evaluated by patients. The final QoC indicators were selected by a group of IBD patients using a Delphi consensus methodology. Results: An initial list of 54 QoC indicators was selected by the steering committee. The QoC indicators were evaluated by 16 patients who participated in 2 focus groups. They identified 21 indicators that fulfilled the understandability and evaluability requirements. The 10 most relevant QoC indicators were selected by 26 patients with IBD using a Delphi consensus. The selected items covered important aspects of QoC, including professionalism, patients' autonomy, information, accessibility, and continuity of care. Conclusions: The present Delphi consensus identified QoC indicators that are useful for developing and measuring improvement strategies in the management of IBD.