Development of Patient-Centered Disability Status Questions to Address Equity in Care

Background Patients with disabilities experience disparities in accessing and receiving high-quality health care services as compared to patients without disabilities. To address the disparities, health care organizations need to identify which of their patients have disabilities to track quality of care and provide appropriate health care accommodations. To date, no evidence-based sets of disability questions exist that serve these purposes. A study was conducted to identify patient-centered disability questions for health care organizations to determine which patients require health care accommodations and to track the quality of care experienced by patients with disabilities. Methods In the first of three phases, a focus group with patients and caregivers (N = 54) and interviews with providers (N = 15) were conducted to explore the disability questions that they believed were important. In the second phase, nationally recognized experts (N = 17) participated in a modified Delphi panel to develop a set of disability questions. The third phase entailed cognitive interviews (N = 46) with patients with and without disabilities to refine the wording of the disability questions identified through the previous rounds. Results Through the three phases, six essential questions and three additional recommended questions were identified. Questions addressed hearing, visual, motor, cognitive, communication, and learning disabilities, and the ability to conduct activities of daily living. An overall question for disabilities not included in the previous questions was also identified. Conclusion Through a rigorous, three-stage process that engaged multiple stakeholders, patient-centered disability questions were identified for health care organizations to use to identify disparities within their organizations and accommodations that address these disparities.