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

Disclosures

Clin Endocrinol. 2021;95(6):818-840. 

In This Article

The Multidisciplinary Team

Optimal care for infants and adolescents with DSD requires an experienced multidisciplinary team (MDT) that is accessible through regional centres or clinical networks that link between one or more specialist centres. It is clear that many centres that deliver care in DSD do not have access to the whole range of expertise that may be required.[6,7] As a minimum standard, the clinical team for children should include specialists in paediatric endocrinology, paediatric urology, paediatric clinical psychology, paediatric radiology, paediatric nursing and, in the case of newborn infants, neonatology and, in the case of the older child, an adolescent gynaecologist. All patients should also have a named keyworker which could be the specialist nurse in the team, but the family and young person should also be able to directly contact the lead clinician. In addition, the core MDT should have links to a wider MDT which includes specialists from clinical genetics, clinical biochemistry, adult endocrinology, adult urology, assisted conception, plastic surgery, gynaecology, adult clinical psychology, psychiatry, social services, sex therapy and if possible a clinical ethics forum (Table 1). The parents and the young person should be informed of the range of support that is available. The MDT has a responsibility to learn and develop their practice and that of other services in their network and region including non-specialists who are often the first point of contact in a new presentation. The network should have a forum to meet regularly, in the context of a clinic or an educational meeting where the team can review and discuss its own performance. Members of the MDT should also be aware of how their own values and beliefs are played out in the clinical setting. Engagement of the MDT in quality improvement exercises and in building collaborative working partnerships, attendance at joint clinics and education events are crucial if knowledge and information sharing as well as care is to be optimized within the team. The role of a service manager or a clinic coordinator and a database administrator has not been sufficiently emphasized in the past. Whilst it is possible that some of these roles can be assumed by one of the existing members of the MDT, there is still a need for dedicated time for overseeing and/or performing these tasks that allow structured management within a complex service. For certain rare conditions associated with DSD, the need for an out of region referral or discussion may be required. Virtual electronic platforms such as the clinical patient management system (CPMS) that is available to centres affiliated to the European Reference Network (ERN) for rare endocrine conditions (Endo-ERN) can provide a forum where a complex case can be remotely and securely discussed with several experts at short notice.[8] The use of secure NHS-approved web-based platforms may also obviate the need for immediate physical transfer of a patient or a family for specialist MDT input.

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