Patient Perspectives of IBD Care and Services: An Integral Part of a Pan-Canadian Quality Improvement Initiative

BACKGROUND: As beneficiaries of health service improvement initiatives, patients should have their perspectives of and gaps in care elicited to inform and guide the development of quality indicators to assess health care services. The purpose of this study was to identify patient perspectives amenable for conversion into measurable inflammatory bowel disease (IBD) care quality indicators. METHODS: Crohn’s and Colitis Canada’s Promoting Access and Care through Centres of Excellence (PACE) program organized four patient focus groups in three Canadian provinces in 2016 to capture the perspective of patients on IBD care services. The RQDA package in R was used for transcript analysis, theme identification and for building a theme hierarchy based on the number of citations. The main themes were converted into patient-derived quality indicators. RESULTS: Several perceived unmet needs were elicited from participants that could be converted into measurable quality indicators. These unmet needs addressed the need for information, access to multidisciplinary services and specialized care, and access to psychological support. Patient unmet needs informed the selection of nine quality indicators that were included in the final list of PACE indicators to assess IBD care services across Canada. CONCLUSIONS: Our study provides a detailed description of patient perspectives on IBD care services that were an integral part of the development of measurable indicators of the quality of care in the context of a universal health care system.