RESUMO
BACKGROUND: Crohn's perianal fistulas (CPF) contribute to lowered quality of life for patients with Crohn's disease. Previous research has indicated potential racial and/or ethnic disparities in diagnosis and management of patients with CPF. This study aimed to expand on previous investigations in the management of patients with CPF to identify educational needs and explore potential disparities in care. METHODS: To understand specific educational needs of US patients and caregivers of patients with CPF, a survey instrument was developed and fielded to patients and caregivers in September/October 2020. Subanalysis and inferential statistics were used to segment the patient/caregiver sample by race/ethnicity and determine potential areas of care disparities. RESULTS: Of 148 patient/caregiver responses analyzed, 28 were non-white (including American/Alaskan Native Indian, Black/African American, Hispanic/Latino, Native Hawaiian/Pacific Islander, and multiethnic); 12/28 were CPF patients and 16/28 were parents or caregivers of CPF patients. The reported mean age of the CPF patient was 32 years for non-whites and 35 for whites. Insurance coverage varied between groups, with non-whites mainly covered by Medicare/Medicaid (68% vs 32% whites), and whites mainly covered by private insurance (64% vs 25% non-whites). Non-white patient/caregivers reported a longer mean time between symptoms and diagnosis (2.08 yr) than white patients/caregivers (less than 1 yr). White patients/caregivers reported more (50%) current use of biologics than non-whites (36%); however, past use of biologics was near equal (51%) for whites and (50%) for non-whites. Of patients who had undergone surgical procedures (86.5%), non-whites had a lower number of different surgery types (1.64) than whites (2.31). The top two reported goals of treatment for both groups were decreasing pain and healing the fistula. Less non-white patients/caregivers agreed or strongly agreed they were satisfied with their current quality of care (39%) and access to care (57%) than white patients/caregivers (72% and 69%, respectively). Non-whites were more likely to disagree or strongly disagree that the main doctor who treats CPF is knowledgeable about their CPF and its treatments (25% vs 3% whites), and that they agree or strongly agree they know more about CPF than their doctor (21% vs 15% whites). Patients/caregivers (non-whites vs whites) perceived somewhat, very or extremely significant barriers to care to be inadequate community social services for CPF care (82% vs 79%), out-of-pocket costs of care (71% vs 84%), limited information to make difficult decisions for their CPF treatment (82% vs 86%), physical/emotional stress of managing their CPF (82% vs 79%), lack of access to specialist care (89% vs 88%) and lack of effective treatments (86% vs 89%). Only 50% of non-white patients/caregivers and 69% of white patients/caregivers agreed or strongly agreed that they know where to go to get CPF information. CONCLUSION: Disparities in diagnosis and management of CPF exist between non-white and white patients/caregivers, including length of time to diagnosis, perceptions of quality of care and barriers to treatment. Further research into disparities in the management of CPF is needed, as is CPF education for patients/caregivers and HCP education on managing CPF in minority populations.
RESUMO
Despite an increased focus and urgency for CE/CME professionals to effectively and systematically assess the impact of their educational interventions, the community has struggled to do so. This struggle is in large part due to the lack of a standardised outcomes language and a set of unified approaches to measure and communicate impact. In the spring of 2018, a group of volunteer educational research scientists and CE/CME professionals established a rigorous consensus-building process in an effort to address this need. This report describes the background, methods and first-year output (Glossary V1) of the Outcomes Standardisation Project (OSP); begins to introduce examples of how the OSP Glossary V1 may support the CE/CME professional community and concludes with plans for the future of establishing a common framework for the profession.
