A Web-Based Tool for Shared Decision Making in DSD. The birth of a child with DSD is anxiety-provoking. Stressors associated with ascertaining a DSD include weathering drawn-out diagnostic testing periods, absorbing complex medical information, and managing strains on family and other social relationships associated with potentially stigmatizing conditions. It is in this context, when usual social support systems are often perceived as inaccessible, that parents are called upon to make decisions having pervasive consequences for their child. Decision support tools (DST) are designed to facilitate patient involvement in decision-making by identifying decision points, delivering information about options and outcomes, and clarifying personal values. DSTs complement, rather than replace, counseling from healthcare practitioners.
In Phase I, an online DST was created following International Patient Decision Aid Standards guidelines and revised in an iterative manner following input on content and functionality from healthcare providers, patient advocates, and parents of affected children. The DST is intended to help parents make intentional choices among options by providing information relevant to their child’s DSD and addressing emotional states and values that inform their decisions. Topics include gender assignment, genetic testing beyond karyotype, and decisions regarding gonads, genital surgery, sharing information with their child and others.
In Phase II, healthcare providers at three U.S. medical centers audio-recorded the earliest provider-family discussions (n=15 index cases) and subsequent consultations about diagnostic findings and treatment options. Parents completed questionnaires about psychosocial adaptation and decision-making, and a semi-structured interview.
The study is ready to move into Phase III: the DST will be introduced in usual care. Comparisons of the audio-recorded provider-family consultations, parent-report questionnaires and interviews serve as outcome data.
Acknowledgments: This project is funded by the Patient-Centered Outcomes Research Institute (PCORI #1360) and made possible with help of the DSD-Translational Research Network (R01 HD068138).
US Researchers:
N. Callens1, L.A. Siminoff2, M. Gardner1, M. Sharp1, J. Green3, M. Muscarella3, P. Fechner4, M. Shnorhavorian4, C. Keegan1, B. Yashar1, E. Vilain5 & D.E. Sandberg PhD1
- University of Michigan; Department of Pediatrics; Ann Arbor, MI; USA
- Temple University; Department of Public Health; Philadelphia, PA; USA
- Accord Alliance; Whitehouse Station, NJ; USA
- Seattle Children’s Hospital; Departments of Pediatrics and Urology; Seattle, WA; USA
- University of California, Los Angeles; Department of Human Genetics; Los Angeles, CA; USA