Family Occupations as an Outcome Measure in a Clinical Trial for Fragile X Syndrome
Location
Guzman 114, Dominican University of California
Start Date
4-20-2017 2:40 PM
End Date
4-20-2017 2:55 PM
Student Type
Graduate
Faculty Mentor(s)
Laura Greiss Hess, Ph.D., OTR/L
Presentation Format
Oral Presentation
Abstract/Description
Fragile X Syndrome (FXS) is the most common form of inherited intellectual and developmental disability and a single gene cause of autism spectrum disorder (Smith, Hong, Greenberg & Mailick, 2016). Sertraline (trade name Zoloft), a common SSRI, has been used clinically to treat anxiety, irritability, and socialization problems in FXS. A randomized control trial found low doses of sertraline, significantly improved social skills, expressive and receptive language, visual tracking and fine motor skills in young children (2-6 years old) with FXS (Hess et al., 2016). Research studies on pharmacologically-based treatment methods have provided promising and valuable information about potential future treatments of FXS (Berry-Kravis et al., 2013; Hessl et al., 2016). However, a lack of adequate outcome measures in targeted medication treatment trials has made it difficult to assess improvements in occupational functioning and independence. Current research has focused on quantitative data, yet these normative tests do not reflect children’s ability to improve in everyday life nor show the daily lived experiences in context of children with FXS from the family’s point of view. The purpose of our study is to examine alternative outcome measures – in the form of semi-structured interviews which are occupation centered. The main research question is as follows: can semi-structured interviews reveal differences in change over time in lived daily family experiences when studying children with FXS during a clinical medication trial? Preliminary results will be presented.
Family Occupations as an Outcome Measure in a Clinical Trial for Fragile X Syndrome
Guzman 114, Dominican University of California
Fragile X Syndrome (FXS) is the most common form of inherited intellectual and developmental disability and a single gene cause of autism spectrum disorder (Smith, Hong, Greenberg & Mailick, 2016). Sertraline (trade name Zoloft), a common SSRI, has been used clinically to treat anxiety, irritability, and socialization problems in FXS. A randomized control trial found low doses of sertraline, significantly improved social skills, expressive and receptive language, visual tracking and fine motor skills in young children (2-6 years old) with FXS (Hess et al., 2016). Research studies on pharmacologically-based treatment methods have provided promising and valuable information about potential future treatments of FXS (Berry-Kravis et al., 2013; Hessl et al., 2016). However, a lack of adequate outcome measures in targeted medication treatment trials has made it difficult to assess improvements in occupational functioning and independence. Current research has focused on quantitative data, yet these normative tests do not reflect children’s ability to improve in everyday life nor show the daily lived experiences in context of children with FXS from the family’s point of view. The purpose of our study is to examine alternative outcome measures – in the form of semi-structured interviews which are occupation centered. The main research question is as follows: can semi-structured interviews reveal differences in change over time in lived daily family experiences when studying children with FXS during a clinical medication trial? Preliminary results will be presented.