Cerebral Palsy Clinic to You: Using Human-Centered Design to Develop and Pilot an Online Health Tool for Adults with Cerebral Palsy

PROJECT SUMMARY/ABSTRACT Life expectancy for people with cerebral palsy (CP) is increasing – with adults with CP facing a dramatic shift in healthcare access and services upon transitioning to adulthood. Adults with CP have unique healthcare needs and risks beyond physical disability, including higher prevalence of many chronic conditions at younger ages compared to the general population. Many of these chronic conditions are amenable to early detection and treatment through primary care and preventive screening. However, individuals with disabilities including CP face healthcare-related disparities, including lower rates of many preventive services and providers that do not feel comfortable treating patients with disabilities. An online health tool for individuals with Down syndrome improved adherence to healthcare guidelines with high levels of patient and provider satisfaction. Such a tool would require significant adaptation for CP, but would be an ideal tool to adapt given its effectiveness in another common lifespan condition. Dr. Cristina Sarmiento proposes to leverage implementation science frameworks and human-centered design to adapt this online health tool for CP and develop Cerebral Palsy Clinic to You (CPC2U) through the following aims: 1) qualitatively explore design and implementation considerations for CPC2U among primary care providers; 2) adapt an online health tool (CPC2U) to promote appropriate preventive care for adults with CP through human-centered design; and 3) pilot CPC2U to assess acceptability and feasibility. This mentored career development award will support the transition of Cristina Sarmiento, MD, an Assistant Professor of Physical Medicine & Rehabilitation at the University of Colorado, into an independent physician scientist and her long-term career goal of becoming a national leader in lifespan research for individuals with childhood-onset disabilities. To this end, Dr. Sarmiento will complete additional training in these key areas: 1) qualitative methods for intervention design, implementation, and dissemination; 2) human-centered design to develop interventions with community involvement; and 3) designing and conducting pragmatic clinical trials. The University of Colorado Anschutz Medical Campus provides a unique research environment to conduct this research, supported by collaborative research partnerships between the Adult and Child Center for Outcomes Research and Delivery Science (ACCORDS), University of Colorado Hospital, and Children's Hospital Colorado. Dr. Sarmiento's nationally recognized team of mentors, Dr. Megan Morris (disability equity research and qualitative methodology), Dr. James Feinstein (complex primary care research and pragmatic clinical trials), Dr. Edward Hurvitz (lifespan disability and rehabilitation research), Dr. Daniel Matlock (human-centered intervention design and implementation), and Dr. Kathryn Colborn (biostatistics), will guide completion of the proposed training and research plan. This innovative proposal could serve as a model for community involvement in intervention design for other lifespan disabilities.