Vivian Lin
Pronouns: she/her
Research Mentor(s): David Sandberg
Research Mentor School/College/Department: Pediatrics / Medicine
Program:
Authors: Vivian Lin, Zoe Lapham, Melissa Gardner, David Sandberg
Session: Session 2: 10:00 am – 10:50 am
Poster: 39
Abstract
Background: The 2006 Consensus Statement on the Management of Intersex Disorders defines differences/disorders of sex development (DSD) as “congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical.” Comprised of 16 US-based children’s hospitals and patient/family stakeholders, the DSD-Translational Research Network (DSD-TRN) serves as a platform for patient-centered research and quality care, where patient data are collected in a centralized registry and the aggregated data are applied to inform improved clinical practice for patients and families. The central registry for the DSD-TRN is under revision – a component of which involves standardized psychosocial assessment forms completed by patients and parents from network sites. Objectives: (1) Summarize the creation of a centralized registry for DSD and the completeness of psychosocial forms entered into it; (2) Using registry data, examine the relationship between satisfaction with primary and secondary sex characteristics from the patient-report Body Image Scale (BIS) and Global Self-Worth scale from the Self Perception Profile (SPP) for adolescents. Methods: The psychosocial forms included in the Registry REDCap include Psychosocial Assessment Tool; Support and Resource Assessment; Adult SRA, Patient Health Questionnaire-4; Knowledge of Condition: Caregiver Report and Self Report; Child Behavior Checklist; SPP for child, adolescent, college, emerging adult, and adult; BIS for girls/women and for boys/men; Multidimensional Gender Identity Scale; and the Youth Self-Report. These forms are first uploaded to each sites’ local REDCap database and then compiled to be uploaded into the Central Registry REDCap at Michigan Medicine. From Registry data, 136 BIS forms and 88 SPP Adolescent forms are available. Ten adolescent boys and 27 adolescent girls have completed both forms and are included in this report for a total sample size of 37. The BIS and SPP forms included in the study are completed within 3 months of each other. For patients that have completed more than one set of BIS and SPP data, only the first set will be used. Three correlational analyses were conducted on age, satisfaction with primary sex characteristics, satisfaction with secondary sex characteristic, and Global Self-Worth. First analysis was of the overall sample as a whole and two separate analyses were conducted by gender (adolescent girls and adolescent boys). Results: Currently, there are 488 patient records in the Registry REDCap and a total of 3763 completed forms. Focusing on the BIS and SPP data, correlational analyses indicated a significant positive correlation between patient satisfaction with primary sex characteristics and SPP Global Self-Worth (r = 0.35, p < 0.05) in the entire sample. No statistically significant relationships were observed between secondary sex characteristics and SPP Global Self-Worth for the full sample. Two additional analyses were conducted to identify significant correlations by gender (adolescent boys and adolescent girls). Among adolescent girls, a significant positive correlation between primary sex characteristic and SPP Global Self-Worth (r = 0.46, p < .05) and a significant correlation between secondary sex characteristic and SPP Global Self-Worth were observed (r = 0.42, p < .05). When conducting correlations in the adolescent boy sample, no statistically significant correlations were observed (p > .05). Discussion: Establishment of a standardized psychosocial assessment protocol and entry of clinical data into a centralized registry helps produce empirical-based results that hold implications for understanding patient needs and improving clinical care. This is especially important in conditions like DSD that are rare.
