Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice

University of Pittsburgh Medical Center Adult Spina Bifida Clinic

The Adult Spina Bifida Clinic at the University of Pittsburgh Medical Center is one of a handful of facilities specializing in ambulatory care for adults with spina bifida rather than children. Spina bifida is the most common permanently disabling congenital condition in the U.S.18 People with spina bifida are, on average, living longer than they used to thanks to improved medical, particularly urologic, care. The clinic treats more than 250 patients a year, many coming from hours away. The Pennsylvania Department of Health provides grant funding for the clinic for care coordination, mental health screening, and nutritional consultations.

Brad Dicianno, M.D., a rehabilitative medicine physician and the clinic’s director, has led research projects on how to support patients between visits. In one pilot, a nurse visited patients in their homes to offer education on preventing complications and encourage them to set short-term goals (e.g., drink more clear fluids), long-term goals (e.g., complete an adaptive driving course), and maintenance goals (e.g., take all medications as prescribed). Nurses met with patients every quarter and were available via telephone to answer questions and help arrange medical visits and support services. After two years, the 65 patients had on average improved their physical functioning, mood, and self-reported quality of life. Cost of care for preventable conditions increased significantly during the first year, likely because of greater detection and treatment of conditions. Costs declined during the second year, though not significantly.19

To create a sustainable and replicable wellness program, Dicianno and colleagues are piloting digital tools. The Interactive Mobile Health and Rehabilitation (iMHere) platform — developed with patients and accessible to those with cognitive, motor, or sensory impairments — helps people manage their conditions and allows them to securely communicate with their clinicians via smartphone. It includes a module that tracks medications and reminds users to take them, and one that prompts users to perform catheterization and bowel management and report problems. Another module prompts users to conduct inspections of insensate skin and send photos of wounds or other potential problems, while another reminds them to complete a survey that detects depressive symptoms. Case managers and clinicians can review patients’ responses and respond to problems.


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