Endocrine Abstracts

Background/Aims: In DSD care, clinical guidelines increasingly recommend postponing non-medically necessary interventions until children can participate in decision-making. While this shift reflects important ethical and clinical developments, its practical and psychosocial implications remain insufficiently understood. Patient organisations are well positioned to capture lived experiences across generations and care trajectories. This study explores how decision-making in DSD care is experienced by people with a DSD and parents of children with a DSD, with the aim of identifying what families need when choices are deferred rather than resolved early.

Methods: This qualitative study was initiated and conducted by DSD Nederland, the Dutch patient organisation for people with a DSD and their families. Data were collected through two focus groups (adults with a DSD; parents of children with a DSD) and three additional in-depth interviews (two parents and one child). Focus groups were co-moderated by trained experiential experts from the organisation. Conversations were analysed thematically, with strict anonymity ensured and verbatim quotations used to illustrate participants’ experiences.

Results: Participants described delayed decision-making not as the absence of choice, but as an ongoing process requiring continuous guidance. Decisions were experienced as recurring moments rather than single events. Key themes included whether to intervene, timing and age, shame and guilt, the influence of the social environment, openness and disclosure, and the role of parents in navigating uncertainty. Participants also discussed medical examinations and hormonal treatments, access to psychological support, availability of information, peer contact, and the impact of language and diagnostic labels. While postponing interventions was often seen as supporting children’s future autonomy, participants emphasised that delayed decision-making can create prolonged uncertainty and emotional burden for families when adequate support is lacking.

Conclusion: From a patient organisation perspective, delaying non-medically necessary interventions shifts, rather than removes, the need for care. Experiential knowledge highlights that delayed decision-making must be accompanied by ongoing communication, psychosocial support, access to peer contact, and careful use of language. Integrating patient-led qualitative insights alongside medical expertise is essential for translating policy changes into meaningful, supportive DSD care.