Adults with cerebral palsy (CP) have a high risk of many chronic conditions, and at earlier ages compared to the general population. These chronic conditions, combined with a higher risk of having multiple chronic conditions, have significant negative effects on health and function. Early detection and management through comprehensive preventive screening (e.g., breast and colon cancer screening, counseling on tobacco and alcohol use, vaccines), as recommended for the general population, will likely improve outcomes. Adults with disabilities often do not receive recommended preventive services; however, this has not been adequately described for adults with CP. The objectives of this research project are to: 1) describe adherence to preventive screening services in adults with CP; and 2) explore challenges to providing preventive care for adults with CP. Using a mixed methods approach, our data will be mixed and merged to guide the development of a patient-facing online health tool aimed at increasing self-efficacy and adherence to recommended preventive services in adults with CP, which we will then trial in future studies.
We will accomplish these objectives via the following aims:
Aim 1: Conduct a cross-sectional analysis of healthcare claims data to describe adherence to recommended preventive services for adults with CP: Through cross-sectional analysis of healthcare claims (i.e., billing) data, we will describe adherence to recommended preventive services in adults with CP, which can be compared to publicly available data on preventive services in the general population. We will also directly compare adherence to recommended preventive services in adults with CP to adults with autism spectrum disorder (ASD), as an example of a developmental disability with lower prevalence of physical disability.
Hypothesis 1a: Adults with CP will have low adherence to recommended preventive services compared to the general population.
Hypothesis 1b: Adults with CP will have lower adherence to recommended preventive services compared to adults with ASD.
Aim 2: Using qualitative methods with adults with CP, caregivers, and primary care providers (PCPs), explore experiences with receiving/providing preventive care for adults with CP: Through semi-structured interviews with PCPs and focus groups with adults with CP and caregivers, we will better understand challenges to and potential solutions for providing comprehensive preventive care to this population. We will also seek feedback on the potential utility of a patient-facing online health tool to increase adherence to recommended preventive services in adults with CP.
Improved understanding of preventive care gaps and potential solutions will have a substantial impact on the overall health of individuals with CP across the lifespan. This proposal is significant because adults with CP face many challenges to their health and function and are currently underrepresented in the scientific literature, as well as innovative as we will use stakeholder-engaged methods to guide development of a new tool. Completion of these aims will lead directly to the development and trial of a patient-facing online health tool aimed at increasing self-efficacy and rates of preventive care for this vulnerable, understudied population.
