Living with Fragile X Syndrome: Occupations as an Outcome Measure in a Clinical Trial
The purpose of this study was to evaluate the use of semi-structured interviews as an outcome measure in a clinical trial for children with fragile X syndrome (FXS) ages 2-6. This qualitative approach was used to analyze twenty-five interviews of parents with children in a double-blind medication trial - sertraline or placebo. The aim was to assess occupational improvements in their child that may not have been detected with the use quantitative outcome measures alone. Results showed greater improvements in the sertraline group in areas of behavior, social participation, sensory-related behaviors, receptive language, education, family impact and therapeutic strategies. Our findings support the use of semi-structured interviews as an additional outcome measure in a medication trial to account for the voice and context of family experiences through an occupation centered lens.
Laura Greiss Hess OTR/L, Ph.D.
Department of Occupational Therapy, Dominican University of California
San Rafael, CA
Genetics, occupational therapy, Pharmacy, Medication trial, occupations, outcome measures, qualitative, Fragile X Syndrome
Genetics | Occupational Therapy | Other Pharmacy and Pharmaceutical Sciences
Gothelf, Kaylee E.; Duong, Ty; Baldinger, Ana; and Chase, Theresa, "Living with Fragile X Syndrome: Occupations as an Outcome Measure in a Clinical Trial" (2017). Student Research Posters. 52.