Background: Disorders/differences of sex development (DSD) differ from other rare conditions which are often accompanied by significant morbidity and mortality. With limited exceptions, DSD are not life-threatening and do not predict a given level of physical health or health-related quality of life across the lifespan. The birth of a child with DSD is anxiety-provoking. Stressors include weathering drawn-out diagnostic testing, difficulty 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.
Objective: This presentation describes the decision making challenges health care providers and families face in DSD and the potential value of introducing a decision support tool that facilitates informed and balanced discussions.
Method: A web-based decision-support tool for parents of newborns/young children with DSD, designed with input from scientists, clinical specialists, patients, parents and patient advocates. In the projects initial phase, clinicianparent discussions were audio-recorded without having presented the decision support tool. In the on-going phase, the tool is introduced and the clinical discussions continue to be recorded to assess whether the quality of the discussions change once parents have the opportunity to deliberate using the tool. Evaluation of the tool includes qualitative coding of the audio-recordings, quantitative questionnaires and a semi-structured interview.
Results: Preliminary findings will be presented.
Conclusion: As long as there is not strong evidence showing the superiority of one approach over another with regard to DSD decisions, there will be a strong need to develop strategies promoting informed and shared decision making in DSD.
Funding: Patient-Centered Outcomes Research Institute (PCORI) Award #1360 and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (R01 HD068138; DSD-Translational Research Network).
01 - 03 Oct 2015
European Society for Paediatric Endocrinology