The School of Medicine and Public Health held their annual Shapiro Fellowship Poster Session, and Medical Student Jesse Snell, pictured above with Dr. Melissa Villegas and CPP Director Sarah Davis with his Research Poster, presented on his joint Department of Pediatrics/CPP project. Last Summer Jesse researched existing resources for Primary Care Providers caring for children with disabilities (CWDs). The project’s ultimate goal is to create actionable materials to support doctors like Melissa who want to ensure that patients get all the care and resources they need. Responsive strategies include improving physician access to training and information, improving provider awareness of the legal rights of CWDs, and expanding primary care resources, like toolkits. We plan to invite a new Shapiro fellow to build on Jesse’s work next summer.
Research Abstract:
Creating an Evidence-Based Provider Toolkit to Increase Health Equity for Patients with Disabilities
Names
Sell, J., BA, Villegas, MA., MD, Davis, S., JD, MPA
Background
People with disabilities (PWD) are the largest U.S. minority group, comprising 27% of adults. They are more than twice as likely to have heart disease, diabetes or obesity, yet they also underutilize preventative care. Barriers to care identified by PWDs and healthcare professionals (HCP) include communication, education, and resources. Responsive strategies have been identified, including improving HCP access to training and information, improving HCP awareness of the legal rights of PWDs, and expanding primary care resources.
Objective
Identify challenges in the extramedical primary care of PWDs, focusing on health insurance, structural, and relational barriers, and assess if and how an HCP toolkit may be ameliorative.
Methods
The project has four stages: 1) Environmental Scan, 2) Needs Assessment, 3) Toolkit Creation, and 4) Dissemination. Stage 1 was completed this summer and involved an extensive search of existing resources.
Grey and scientific literature and Google were searched using database-specific phrases generated from shared key terms. Included results were in English, of U.S. origin post-01/01/2014, concerning extramedical care of PWDs, intended for HCPs, accessible, and unique.
Results
10,651 results from 11 databases were assessed. Only Google (336), Web of Science (18), and PubMed (1) yielded criteria-meeting results. 331 results were unique.
Prevalent topics were patient care (228), insurance (42), and accessibility (31). Primary care HCPs were the target audience in 37. 127 offered direct guidance and 123 listed resources. 137 did not specify a disability, 85 concerned autism, and 46 concerned down syndrome. Common sources included private (96) and governmental (70) organizations, educational institutions (56), and medical societies (41). 53 were toolkits, though some contained only a few external links, those that were robust had single-disability focus, and none focused on primary care. 29 results came from scientific literature, mostly covering direct patient care. 302 results came from grey literature via Google. These results were generally poor quality: many contained only external links, often to the same resources, broken links were common, unique resources were few and limited, and, though rare, some sites perpetuated myths about disabilities.
Overall, resources for HCPs caring for PWDs were difficult to find, of variable quality and validity, frequently replicative, and lacked generalizability.
Takeaways to aid resource and survey development were compiled for next steps.
Conclusions
Our results suggest a comprehensive toolkit for the extramedical primary care of PWDs does not yet exist, supporting progression to surveying primary care HCPs in Stage 2: Needs Assessment.