The stars inside of us: a case study on the lack of neurological disability research in adult populations and its impact on clinical outcomes

Abstract: Advances in the field of neurological disability have been predominantly shaped by pediatric research efforts. However, non-degenerative neurological conditions affecting adult populations receive very little formal research investment in the United States, primarily due to a lack of advocacy for disabled adults as they age out of the pediatric care system. This case study uses cerebral palsy (CP) – an umbrella term for a group of disorders caused by abnormal brain development or brain damage at birth – as an example of how poor long-term clinical outcomes after initial diagnosis in childhood may be linked to disparate systemic variation in pediatric and adult neurological care. Because very few health care providers specialize in treating adults with CP, and even fewer providers are aware of the unique ways in which CP can affect an adult differently than a child, it is critical to conduct and disseminate research related to neurological disability in adult populations to improve clinical outcomes in disabled adults. While we can leverage pediatric research broadly to guide our understanding of the clinical course of CP, to interpret underlying neuropathologies, and to systematize provisions of care, supplementing pediatric research efforts with adult research is warranted to better understand neurological outcomes across the patient lifespan. This thesis will be developed through an analysis of perspectival accounts of the lack of research efforts for the study of adult neurodisability, and supported by a reflection of their relevancy to the core principles of neuroethics.