Endocrine Abstracts

Introduction: Differences in sex development (DSD) services now include psychology provision as standard care within MDTs. Caregivers and CYPs have wide-ranging biopsychosocial needs and care should be delivered via holistic, specialist MDTs, including access to specialist clinical psychology.

Objective: Evaluate i) psychology input required for children with DSD, ii) review interventions typically accessed via specialist psychology, iii) evaluate clinician-reported outcomes for families accessing psychology.

Method: Review of patients referred to DSD psychology between 2020-2024. Data collected from clinical notes included: age at referral, number of psychology sessions, intervention focus, referral reason and clinician-reported outcomes.

Results: 61 patients were referred (2.2 per month). 47% 46,XY DSD, 46% 46,XX DSD (including 20% congenital adrenal hyperplasia), and 7% sex chromosome DSD. 61% (37) had a joint appointment with psychology and another MDT member. Mean psychology sessions accessed was 4.2, with 271 mean minutes of direct psychology clinical contact per patient. Referral reasons included ‘support for parents’, ‘support preparing for disclosure’ and ‘helping child understand condition’. Parents/caregivers accessed support with their child in 52% referrals, 11% of referrals were for CYPs without parent/caregiver, and 32% for caregivers/parents. In all cases where support was accessed (78%, 48/61), intervention included multiple areas of focus (e.g., Acceptance and Commitment Therapy, Cognitive Behaviour Therapy, Eye Movement Desensitisation Reprocessing, adjustment to diagnosis, support with disclosure, self-image and identity work). Most frequent psychology reported/related outcomes were ‘increased access to resources’ 54% (26/48), ‘increased caregiver confidence in disclosure’ 43% (21/48), ‘increased CYP understanding of condition’ 41% (20/48) and ‘increased CYP confidence regarding condition’ 37% (18/48). 72% (44/61) cases required non-direct intervention: MDT liaison, complex case discussion, supporting MDT in challenging conversations, education re psychosocial factors in DSD.

Conclusion: Providing holistic support requires specialist psychology provision encompassing a breadth of expert knowledge, skills and competencies beyond standard child psychology provision, including detailed medical understanding of DSD and challenges associated for CYPs and families. Psychology within DSD MDTs is valued by CYP and parents/caregivers; being a necessary, valuable integrated resource in supporting caregivers and CYP to access appropriate, timely information, supporting them across childhood as their needs evolve.