Table 1.
Role | |
---|---|
Neonatologist or General Paediatrician | Initial explanation |
Management of the unwell child | |
Initiation of first‐line investigations | |
Seek advice from paediatric subspecialist (endocrine or surgical) with an interest in DSD | |
Paediatric Endocrinologista | Detailed explanation over multiple visits |
Management of the unwell child | |
Interpreting first‐line investigations and planning second‐line investigations | |
Organize timely and appropriate involvement of other members of MDT | |
Act as the link between the parents and MDT | |
Initiate and monitor long‐term medical therapy such as steroid or sex steroid therapy | |
Paediatric Radiologist | Interpret and often perform ultrasound scans in the newborn |
Judge the reliability of ultrasound scans in the newborn esp. when the results may influence sex assignment | |
Paediatric Urologista | Assessment of external anatomy |
Explanation of the anatomy and results of imaging | |
Explanation of pros and cons of reconstructive surgery | |
Develop a plan for complex imaging (other than pelvic ultrasound) and further assessment of the anatomy | |
Perform procedures such as laparoscopy, biopsy, reconstructive surgery and gonadectomy | |
Organize timely and appropriate involvement of other members of MDT | |
Paediatric Specialist Nursea | Provide general support to the patient and parents in addition to that provided by other members of the MDT |
Arrange specialist investigations | |
Liaise with the rest of the DSD team, including the clinical psychologist | |
Clinical Psychologista | Provide specialist support to parents soon after birth |
Provide support to the growing up child and the parents | |
Develop an individualized plan for each family | |
Guide the MDT on timing and tempo of explanation of the condition to the older child and adolescent | |
Clinical Endocrine Biochemista | Facilitate timely analysis of samples |
Provide specialist support and interpretation of results | |
Guide subsequent biochemical tests | |
Facilitate storage of samples for analysis at a later stage | |
Clinical Geneticista | Facilitate timely analysis of karyotype |
Closer involvement in the child with dysmorphic features | |
Oversee the process of genetic analysis | |
Facilitate storage of samples for analysis at a later stage | |
Genetic counselling | |
Gynaecologista | Availability at an early stage to discuss future outcome and map long‐term care pathway in the affected girl |
Discuss issues related to sexual function, reproductive function and surgery | |
Assess the understanding and review the diagnosis | |
Assess the need for psychology support in the adolescent girl | |
Initiate and monitor long‐term sex steroid therapy | |
Perform examination, investigative and therapeutic procedures in the adolescent girl | |
Oversee vaginal dilator training with specialist nurse | |
Adult Endocrinologist | Investigate and manage the adolescent presenting for the first time after the age of 16 years |
Liaise with other members of the MDT | |
Act as the link between the patient and MDT | |
Initiate and monitor long‐term medical therapy such as steroid or sex steroid therapy | |
Act as the transition link for adolescents under paediatric care |
Professionals that are core members of the MDT who should meet regularly to discuss cases in a clinic setting.