Addressing Health Disparities in Adults with Developmental Disabilities.

Adults with developmental disabilities are a growing population that experiences significant health disparities due to unmet health care and social needs. Few standardized health care guidelines are available or broadly accepted as best practices for this population. The Adult Disability Medical Healthcare (ADMH) is a community-based clinic that provides a unique multidisciplinary team-based approach to addressing the social and health care needs of adults with developmental disabilities within the framework of a Patient Centered Medical Home model. ADMH is developing the necessary research infrastructure and obtaining input from individuals with developmental disabilities, their families, and community stakeholders and is performing foundational analysis to inform the development of guidelines for evidence-based best practices for the care of adults with developmental disabilities. This will set the stage for future research evaluating the impact of these guidelines on health outcomes and the reduction of health disparities in this population. This commentary highlights a process for development of evidence-based guidelines and best practices for care of adults with developmental disabilities.

Co-occurring medical conditions in adults with Down syndrome: A systematic review toward the development of health care guidelines.

Adults with Down syndrome (DS) represent a unique population who are in need of clinical guidelines to address their medical care. The United States Preventive Service Task Force (USPSTF) has developed criteria for prioritizing conditions of public health importance with the potential for providing screening recommendations to improve clinical care. The quality of existing evidence needed to inform clinical guidelines has not been previously reviewed. Using the National Library of Medicine (NLM) database PubMed, we first identified 18 peer reviewed articles that addressed co-occurring medical conditions in adults with DS. Those conditions discussed in over half of the articles were prioritized for further review. Second, we performed detailed literature searches on these specific conditions. To inform the search strategy and review process a series of key questions were formulated a priori. The quality of available evidence was then graded and knowledge gaps were identified. The number of participating adults and the design of clinical studies varied by condition and were often inadequate for answering all of our key questions. We provide data on thyroid disease, cervical spine disease, hearing impairment, overweight-obesity, sleep apnea, congenital heart disease, and osteopenia-osteoporosis. Minimal evidence demonstrates massive gaps in our clinical knowledge that compromises clinical decision-making and management of these medically complex individuals. The development of evidence-based clinical guidance will require an expanded clinical knowledge-base in order to move forward.