Multi-stakeholder opinion statement on the care of individuals born with differences of sex development: common ground and opportunities for improvement.

BACKGROUND: In the last 15 years, the care provided for individuals born with differences of sex development (DSD) has evolved, with a strong emphasis on interdisciplinary approaches. However, these developments have not convinced some stakeholders to embrace the current model of care. This care model has also paid insufficient attention to socio-cultural differences and global inequalities. SUMMARY: This article is an opinion statement, resulting from in-depth discussions and reflection among clinicians, patients, and family support organizations based in the US and Europe, where we seek areas of common ground and try to identify opportunities to further develop resources. The product of these conversations is summarized in 10 panels. The corresponding sections provide additional discussion on some of the panel items. KEY MESSAGES: Participants identified areas of agreement and gained a deeper understanding of the reasons behind disagreements on certain matters and identified the necessary steps to foster future consensus. We offer preliminary recommendations for guiding clinical management and resource allocation. By promoting a broader consensus, we aim to enhance the quality of care and well-being for individuals of all ages who have a DSD.

Listening to Individuals with Differences in Sex Development or Intersex and Their Families: "Not Doing Surgery Does Not Mean Doing Nothing".

Informed decision-making and considerations of the child's best interest offer a starting place for building informed and lifelong discussions that promote the long-term interests and the well-being of individuals experiencing differences in sex development (DSD) or intersex traits. Parents require sufficient information and support to understand what "doing something and doing nothing" really means when learning about nonsurgical options. This may take the form of health literacy support, asking how parents are given access to meaningful and understandable information, as well as psychosocial support and psychological care. Timely psychological assessment and interventions that support informed decision-making actions are an essential aspect of holistic care for children and youth with DSD and their parents. Without actionable tools or approaches, parents cannot make informed decisions about their child's health and, as such, health literacy is a key attribute to aid decision making for both parents and children. As individuals with DSD become increasingly adept at building resourcefulness and gathering and applying knowledge about their bodies, limiting irreversible surgeries in childhood can afford wider life choices. To this end, an educated and informed comprehensive and helpful multidisciplinary group understands and embodies, as a whole team, the need for compassionate, emotionally supportive, and validating care in all interactions with parents of children and individuals with DSD. The paper draws on the primary author's experiences working with the charity, dsdfamilies, concluding with actionable approaches that include supporting personal knowledge through health literacy, examining team-based psychological care, and psychosocial approaches across the lifespan.

Determinant factors of gender identity: a commentary.

Paediatric specialists involved in the care of children with disorders of sex development may be expected to provide straightforward answers to questions concerning the "true sex" of a child, reflecting common perceptions of sex/gender as an immutable binary biological reality. This article highlights how much more broad and complex the topic of gender identity and its development is. Many theories have been put forward to advance knowledge of gender identity. Against the breadth and depth of this vast topic, the current overview is inevitably incomplete. It begins by arguing for a more consistent use of 'sex' and 'gender'. It considers in turn three influential theoretical frameworks that lend themselves to empirical research. These are: 1) the role of the brain; 2) the role of socialisation; and 3) multi-dimensional gender development. The article ends by suggesting potentially fruitful questions and areas for future research.

Working together in placing the long term interests of the child at the heart of the DSD evaluation.

This paper articulates a number of important but often ignored questions that families have during and following the diagnosis of a child with a DSD. Recounting a personal birth experience, it illustrates the urgent need for more psychological and educational support during and following diagnosis and gender assignment. Finally, the paper describes some practical strategies for raising a child living with genital difference. It urges everyone involved in the care of children with a DSD to support parents in looking beyond initial anxiety and worry and always to place the child's long term wellbeing at the very heart of the clinical decision-making and care.