Brian Magaswaran
Research Mentor(s): David Sandberg
Mentor Department: Pediatrics
Authors: Brian Magaswaran, Isabel Lee, David Sandburg, Melissa Gardner, Erica Weidler
Session: Session 2 (10:00am – 10:50am)
Presentation Type: Poster 70
Abstract
Differences of sex development (DSD) is an umbrella term for congenital conditions where
chromosomal, gonadal, and anatomic sex develops atypically. Individuals with DSD and their
caregivers experience multiple challenges in clinical management and psychosocial adaptation.
Areas of similarity and difference in the needs and priorities of those with DSD and their
caregivers may be present.
Together, Accord Alliance and Michigan Medicine researchers developed a web-based survey
of patient and parent needs and research priorities. In addition to providing feedback that
shaped the development of the survey, leaders of five family support and advocacy
organizations distributed survey links to their board members and community members,
resulting in the participation of 286 individuals. Participants fell into three groups: 1. Adults with
a DSD condition (n=207), 2. Parents of individuals with a DSD (n=77), and 3. Individuals who
had a DSD condition and also were parents of a child with a DSD (n=2). Responses of the two
participants in the last group were excluded from comparative analyses.
In response to a list of eight common challenges, individuals with a DSD condition reported
experiencing statistically significantly more overall challenges (M=3.4) than caregivers (M=2.3),
t(282) = 5.5, p<.001. The top challenge reported by individuals with a DSD and parents was
mental health concerns (73.4% and 55.8%, respectively). When it comes to accessing support
or informational resources, individuals with a DSD condition reported accessing statistically
significantly fewer resources (M=2.6) than caregivers (M=3.2), t(282) = 2.9, p<.01. The top
resources sought by both groups were online communities or forums (73.4% and 87.0%,
respectively). The highest ranked research priority for individuals with a DSD condition was
mental health and psychosocial support (ranked 1st of 7 by 44%; mean rank = 2.38); while
parents ranked medical care and treatment options highest (ranked 1st by 49%; mean rank =
2.57).
Differences emerged regarding challenges, accessing support, and research priorities, which
highlights distinct perspectives and lived experiences. Our findings stress the importance of
patient-centered, inclusive care. Addressing these differences through targeted interventions,
advocacy, and continued research can improve support systems and foster a more equitable
healthcare environment.
