January 22, 2014

Kathleen Fisher, PhD,is a federally funded researcher and an associate professor in the Doctor of Nursing Practice Department at the Drexel College of Nursing and Health Professions. Since 1999 she has been working in the field of intellectual and developmental disability, or I/DD.

Currently, she is engaged in community-based participatory action research with the KenCrest Foundation to address concerns of unhealthy weight, specifically the high levels of overweight and obesity that are associated with I/DD diagnosis. A multidisciplinary team of researchers and KenCrest co-investigators plan to learn more by managing subjects’ food portion control and increasing activity levels. Very little research has been done in this area so far and many questions remain unanswered. “Is there the same formula for weight loss in this population? How much exercise? What kind of exercise? What would the diet look like? We just don’t know,” Fisher said.

Individuals with intellectual disabilities usually have different fat distribution, she continued. They tend to be smaller, of shorter stature and have all the risk factors for obesity, heart disease and health conditions associated with aging. In addition, persons with I/DD tend to be more sedentary or lack opportunities for community engagement and exercise. Many are on medications that increase their risk for obesity as well. In addition, there can be behavioral challenges and caregivers of persons with intellectual disabilities likewise need more education on nutrition and exercise, Fisher reported. Sometimes caregivers reward behavior with non-nutrient rich foods and it can be difficult to move away from this type of incentive system.

According to Fisher, despite these challenges and risk factors, the population’s average life expectancy has increased. Because persons with I/DD are living longer, education and emphasis on health promotion strategies could help to extend life expectancy further and enhance the quality of life.

Fisher began her work in the field in 1997 while on faculty at the Pennsylvania State University. In collaboration with the Commonwealth of Pennsylvania and the Department of Health and Human Services, she took part in creating a service organization called the Healthcare Quality Unit (HCQU).  The mission of this organization was to oversee care and build capacity in nine counties in South Central, Pennsylvania for approximately 1200 persons with I/DD. When she came to Drexel in 2004, she had already started looking at how healthcare decisions are made for people with disabilities.

Fisher has just returned from the inaugural Asia-Pacific Conference of the Society for Medical Decision Making in Singapore, where her poster, “Perspectives on decision making from parents of adults with intellectual and developmental disability” was presented. For persons with I/DD there are major problems around decision making, transition planning, and end of life. People living with intellectual disabilities in Pennsylvania are required by law to receive education up to the age of 22. However, after this age, the care and attention intellectually disabled persons receive drops off dramatically, she observed.

Fisher is currently on sabbatical with Mary McCarron, MD, the Dean of Health Sciences at Trinity College in Dublin, Ireland. McCarron is the Principal Investigator of the first-ever longitudinal study of aging and intellectual disability in all of Ireland, titled, “The Intellectual Disability Supplement to The Irish Longitudinal Study on Aging (IDS-TILDA).” This is the first study of its kind in Europe, and the only study where a direct comparison of aging adults with I/DD can be made to the general aging population.

Findings from IDS-TILDA, Fisher’s research, and her work at KenCrest, suggest that the aging of individuals with I/DD is a growing public health concern. Because persons with disabilities are now outliving their caregivers, they present unique chronic health problems to a medical system that is ill prepared to understand or confront them.  There is a definite need to address these health concerns and service issues, she concluded.