Grantee Profile: The Cleveland Clinic
People with Down Syndrome have complex health issues, but few fail to receive recommended health care. According to a 1999 study less than 50% of patients with Down syndrome were evaluated for obstructive sleep apnea, atlanto-axial instability, hearing loss and vision loss; and only 50 to 80% of adults were screened for cardiac anomalies, reproductive health concerns, dentition issues, and behavioral, psychological, or memory abnormalities.
In another study, researchers from the Cleveland Clinic examined the diagnosis of co-morbid conditions in a cohort of 1100 adults with Down syndrome receiving primary care through their their clinic. Their data suggested under diagnosis/under-reporting of celiac disease, hearing impairment, vision impairment, obesity and osteoporosis.
The Cleveland Clinic collaborated with Up Side of Downs and The Developmental Disabilities-Practice-Based Research Network (DD-PBRN) to develop a solution to improve the health and health care of persons with developmental disabilities throughout the lifespan.
Why Virtual Health Makes Sense
This project aims to improve health services delivery to adults with Down syndrome through the use of a virtual consultation team. The proposed virtual consultation team will be comprised of a physician expert in developmental disabilities medicine, a clinical pharmacist, and a representative of the disabilities advocacy community. In advance of scheduled primary care appointments, the team will review the electronic health records of adults with Down syndrome, then generate an email consultation report to the primary care physician, outlining recommendations for health care services tailored to the individual patient’s needs.
The Cleveland Clinic
The Cleveland Clinic, which provides both specialty and primary cares for people with complex health care needs, is pioneer of electronic health record (EHR) technology. Their health information systems have the capacity to identify and monitor sub-populations of patients, promoting efficient access to critical data and vital collaboration between providers.
Why the Special Hope Foundation Supports This Project
This project aligns with Special Hope Foundation’s mission by aiming to improve health care through efficient use of existing clinical and community-based resources. The Virtual Consultation Team model is a method for delivering education and training to primary care physicians and a means for assuring quality of care. This project targets improvement in general and Down syndrome-specific health care, better recognition and diagnosis of common co-morbidities, and reduction in polypharmacy.