Hannan Farhat
Pronouns: she/her
Research Mentor(s): David Sandberg
Research Mentor School/College/Department: Pediatrics / Medicine
Program:
Authors: Hannan Farhat, Melissa Gardner, Jaclynn Papadakis , David Sandberg
Session: Session 2: 10:00 am – 10:50 am
Poster: 40
Abstract
Background: Differences of sex development (DSD) are “congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical”. DSD is an umbrella term for many discrete conditions that arise during development. Healthcare in the pediatric field regarding DSD involves many different specialists working in multi- or interdisciplinary teams, including behavioral health specialists. Currently, there are no established clinical practice guidelines to aid clinicians and behavioral health specialists through the treatment of individuals with DSD. Therefore, many individuals with DSD attending clinics in the United States and Europe experience variability in their care. This is not ideal in the clinical setting. Objectives: The aim of this study is to establish consensus among experts that will form the basis for guidelines for psychosocial care of those with DSD. Methods: The Delphi method, which involves an iterative process of seeking feedback from experts, or those with first-hand knowledge, that will be used to help reach expert consensus and develop professional guidelines. Delphi studies have four components: systematic identification of the problem area, selection of panel members based on objective and predefined criteria, “Delphi rounds” – iterative rounds of feedback, and closing. The systematic identification of the problem begins the process allowing professionals to draft surveys and questionnaires specific to these issues. Selection of panel members is based on the identified issue, these members are typically experts, or can provide for reliable information. Results: We have completed two major aspects of the four Delphi components: selection of panel members and the systematic identification of the problem. There is a clear consensus in the healthcare field that clinical psychologists play a vital role in the treatment of those with DSD, however there are guidelines to aid these professionals. Therefore, the systematic identification of the problem is centered around the variability in psychosocial care that is given to DSD patients. Continuing on, we selected our panel members based on having a close affiliation with DSD whether that be the individual with DSD themselves, the clinician, or the parent of the individual with DSD. Finally, our team of professionals has established the first survey draft. Major elements include questions that focus on the breaking down of the diagnosis timeline (e.g., what happens, in what order, and at what time) and ranking the relevance of elements thought to be important in the assessment and management of DSD. Discussion: The Delphi method is useful in establishing guidelines for standardized psychosocial assessment and management. Next steps include the fulfillment of the next two major components of the Delphi method including, administering the survey, where professionals will be able to draw conclusions and understand where there is consensus and where there is variability in order to create the psychosocial guidelines.
