Routine identification of patients with disabilities in primary care: a mixed-methods study

Background People with disabilities experience barriers to receiving healthcare and often have worse health outcomes, but data on disability is rarely routinely collected in a standardized way. Objective This study examined how patients responded to being asked about disabilities as part of a routine, self-administered sociodemographic survey. Methods We conducted a mixed-methods study in a multi-site primary care organization. We compared the characteristics of people who responded to a question about disabilities to those who did not respond using logistic regression. We also compared survey responses to data available in medical charts. In-depth interviews were conducted with a sample of patients following survey completion. Results Over 28 months, 15,221 patients were offered the survey and 14,247 (93.6%) responded to at least one question. Of these, 11,275 (79.1%) patients answered the question about disabilities. Older patients, patients who rented their home, and non-White patients were less likely to respond to the question. When comparing survey responses to data from medical charts we identified discrepancies. Patients interviewed reported they had difficulty judging what constituted a disability. Stigma related to mental illness and substance use led them to avoid disclosing those conditions. Conclusions Directly asking patients whether they have a disability may be challenging given confusion about what constitutes a disability and stigma associated with certain disabilities. Future research should examine whether asking about barriers faced in accessing health services could adequately identify patients with disabilities and also be used to identify tangible actions an organization could take to lower barriers to care