Researchers Awarded $1.17 million grant to study the health and well-being of adolescents and young adults with rare conditions

Researchers include Suzanne McDermott, PhD- Principal Investigator, Joshua R. Mann, MD, MPH- Co-PI (both from USC School of Medicine, Department of Family and Preventive Medicine), James Hardin, PhD, (USC ASPH, Department of Epidemiology and Biostatistics)- Co-Investigator, and Orgul Ozturk, PhD, (USC Moore School of Business, Department of Economics), Co-Investigator.

The project will focus on the health and well-being of adolescents and young adults with rare conditions using both a cross-sectional and a longitudinal design. The study group will be 15-24 year olds with spina bifida, muscular dystrophy and fragile X syndrome and we will use linked administrative datasets (Medicaid, State Department of Education, and Vocational Rehabilitation, etc.) to describe the health status and service use of the study group.

They will estimate the age specific prevalence for each condition and describe the occurrence of other acute and chronic medical conditions, including diabetes mellitus, obesity, heart disease, respiratory disease and other conditions.

They will also describe the incidence and prevalence of co-morbid and secondary conditions and the co-occurrence of intellectual disability, paralysis, epilepsy, and attention deficit hyperactivity disorder.

In addition, they will describe the frequency and type of health care received by each group, including rates of hospitalization, emergency department visits, and outpatient services, and the cost-effectiveness of different approaches to care. In the second and third year of the grant, they will interview 125-175 affected individuals and their families to describe their living situation, education, employment, and other markers of social participation, using the questionnaires from the National Longitudinal Transition Study and the RAND 36.

They will describe the transition that occurs as adolescents with each condition mature into young adulthood, in terms of health care and social services (including type and specialty of health care provider by specialty, physical and occupational therapy, speech/language therapy, counseling and other services). Finally, they plan to assess the ability of other states to conduct the linked administrative data analyses and make recommendations that will be generalizable to other states.