Table 1

Example of transition table as used in the DSD clinic of the Erasmus Medical Center

Age (years)Endocrine, urologic, genetic, psychosocial care multidisciplinary team
  • Diagnostics, follow-up, treatment as indicated for the specific DSD.

  • Provide information about the condition to parents and children, including information about the expected pubertal changes.

  • Obtain informed consent whenever needed from parents as well as informed assent from children, in compliance with the Dutch and Belgian Law.

  • Support children and parents to promote coping.

  • Inform the children about their condition, taking into account their developmental phase.

  • Observe the children’s developing gender identity and facilitate open discussion if needed.

  • Evaluate puberty. Hormonal testing and treatment if needed. Provide information.

  • Imaging studies as necessary. If applicable, in case of a girl discuss future gonadal surgeries or vaginal dilatation depending on sexual development. Provide information on pros and cons.

  • Evaluate if genetic tests should be expanded and if parents and children are open to this.

  • Provide the children with additional and more detailed information on diagnosis and consequences for pubertal development.

  • Establish if parents/carers need help with informing the children.

11–17Multidisciplinary team: preparation for adolescence and adulthood.
  • Responsibility shifting from parents to patients (eg, knowledge about diagnosis and practical management of medication, independent doctor visits, where to find information, what help is available).

  • Check that adolescents are fully informed about diagnosis, management, follow-up and both necessary and optional diagnostic and therapeutic procedures. Sexual development, romantic relationships, sex education, optimal procedures to facilitate sexual intercourse like vaginal dilation and fertility (options) need to be addressed.

  • This age period may not be the best time to perform broad genetic analysis as adolescents are often not yet be able to process the consequences of uncertain or incidental findings. However, if genetic testing is performed, consent should be obtained from the adolescents as well.

  • Transfer of care with adult and paediatric specialists in a joint multidisciplinary meeting and/or outpatient clinical setting.

  • Ages are approximate, and cognitive, physical and socioemotional development should be taken into account. The process of informing children about their condition and making them more and more responsible for the management is gradual.

  • DSD, disorders/differences of sex development.