Decision Support for Parents Receiving Genetic Information about Child’s Rare Disease (DSP)
Funding agency: Patient-Centered Outcomes Research Institute (PCORI)
Main award to University of Michigan (Principal Investigator: David Sandberg, Ph.D.)
Total funding period: March 2013 – February 2016
This project seeks to develop a decision aid, used by parents together with health care providers, to help educate parents on sex development, diagnosis process, treatment options, and possible outcomes of genetic testing. For this, parents of newly diagnosed children with disorders of sexual development (DSD) consented to audio recording of their child’s routine medical appointments. Temple University is involved in assessing the usual care provided in these situations through qualitative analysis using the Siminoff Communication Content and Affect Program (SCCAP). SCCAP is a computer program specifically designed for the purpose of coding and analyzing conversational data, and considers not only the content of the conversation, but also relational, nonverbal, and persuasive communication. The results from SCCAP will then be used to compare how the introduction of the decision aid affected communication between parents and health care providers.
Disorders of Sexual Development are congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical. The birth of a child with a DSD raises multiple questions about the etiology and course of treatment. Decisions regarding genetic testing, gender, assignment, and genital surgery are often made quickly and under pressure, and often are irreversible.
University of Michigan
University of California, Los Angeles
Seattle Children’s Hospital