UAB Synopsis, Vol. 26, No. 22, June 18, 2007

Multidisciplinary Clinic Offers Comprehensive Adult Care

The average life expectancy for persons with Down syndrome is now 56 years — more than double what it was a few decades ago — but medical care for adults with the condition is scarce. UAB’s Adult Down Syndrome Clinic, a cooperative effort among the departments of genetics, pediatrics, and family and community medicine, is only the second of its kind in the nation.

“Once individuals with Down syndrome reach 21 years, their options for care start dwindling. These patients are at risk for the many medical conditions related to Down syndrome as well as for common adult disorders such as hypertension,” says Assistant Professor of Genetics and Adult Down Syndrome Clinic Director Edward J. Lose, MD.

Down syndrome is associated with a host of medical complications, including thyroid disease, obstructive sleep apnea, diabetes, visual and auditory defects, testicular malignancies, leukemic, and mental illness. The Adult Down Syndrome Clinic brings together experts from multiple disciplines to provide patients with comprehensive evaluation, ongoing monitoring, and the latest treatments for common comorbid conditions.

Patients have access to psychologists; social workers; audiologists; nutritionists; occupational, speech, and physical therapists; and others. The clinic also addresses psychosocial concerns and evaluates behavioral and living skills. Dr. Lose hopes to enlist a volunteer financial planner who can help patients’ parents set long-term fiscal goals.

Preventing Decline
All individuals with Down syndrome older than 40 years have the amyloid plaques and neurofibrillary tangles characteristic of Alzheimer’s disease, but a minority develop the condition. Many more experience functional declines that can look like Alzheimer’s disease, but deterioration often is a symptom of a treatable, reversible disorder. “Depression and obsessive-compulsive disorder, for example, are common and may present atypically in people with Down syndrome,” Dr. Lose says. “A thorough, expert evaluation of signs and symptoms associated with the deterioration is necessary to avoid missing potentially reversible causes of decline.”

The clinic will collect quality-of-life data from patients. The information will help clinicians evaluate the success of current Down syndrome treatment protocols and will inform evidence-based recommendations for improvements.

“Our goal is to serve as a resource for the 500-plus adult Down syndrome patients in the region as well as for UAB and community physicians who care for these individuals,” says Dr. Lose, who encourages colleagues to contact him with questions about adult Down syndrome patients. He can be reached at 205.934.4983 or elose@genetics.uab.edu.