Society for Endocrinology UK Guidance on the Initial Evaluation of a Suspected Difference or Disorder of Sex Development (Revised 2021)

S. Faisal Ahmed; John Achermann; Julie Alderson; Naomi S. Crouch; Sue Elford; Ieuan A. Hughes; Nils Krone; Ruth McGowan; Talat Mushtaq; Stuart O'Toole; Leslie Perry; Martina E. Rodie; Mars Skae; Helen E. Turner


Clin Endocrinol. 2021;95(6):818-840. 

In This Article

Psychological Care

When a child or young person is identified for investigation regarding a possible DSD, immediate psychological care for patient and family should be provided by the whole team and led by the clinical psychologist. The initial aim is to orientate the family to the psychological tasks and practical demands ahead. There is good evidence in a wide range of chronic childhood conditions that the early involvement of the psychologist can be helpful and information giving combined with psychological techniques focussed on parents' thinking can help with parental adaptation.[24] Whilst there is a need to study these interventions in more detail within the field of DSD, early provision of psychosocial support is increasingly becoming standard practice in the newborn period[25] and it should also be considered good practice in the setting of DSD. Decision-making processes and tools have been suggested as useful methods of engaging parents in a way that provides information and is supportive.[22] Such psychosocial support will allow those impacted to examine and understand their early emotional reactions as well as explore present and future worries, adjust to the period of uncertainty during the initial diagnosis process and prepare for ongoing engagement with healthcare, whilst facilitating inclusion in informed decision-making about themselves or their child.[26] The clinical psychologist is also well placed to assess the level of care the family needs, assess and facilitate the bonding of the parents with the newborn, and, in the case of the young person, perform an assessment of gender identity, when appropriate. The psychological care that is provided as part of the initial approach should always be considered as a routine part of the care that is available and offered to the child or the parent. Although parents of all infants with atypical genitalia may need psychological care,[27] as a minimum, the parents of every newborn with suspected DSD where there has been a delay in sex assignment should be provided immediate clinical psychology input. An approach which is more appropriate for an adolescent needs to be adopted in the case of a new diagnosis in this age group.[28] All adolescents with a newly diagnosed DSD or existing DSD requiring medical or surgical attention should also receive clinical psychology input in addition to any support provided to their parents or wider family. A standardized assessment of the need for future clinical psychology input should also become routine at the point of transfer from paediatric to adult services. In the MDT, the clinical psychologist has important additional roles that include the training of team members in communication and provision of input into tools that are used to collect patient/parent-reported experience of the care received.