CONGENITAL ADRENAL HYPERPLASIA GROUP OF CLIMB

CHARTER FOR PATIENTS WITH CAH

Our Society believes that patients with CAH should have the following facilities available to them, irrespective of their age group or geographical location within the United Kingdom.

  1. They should be under the care of a specialist who is experienced in the management of CAH. This may be a paediatrician/paediatric endocrinologist/adult endocrinologist or reproductive endocrinologist.
  2. The facilities available must include easy access to laboratories measuring the important hormones in CAH, including 17-Hydroxyprogesterone, androstenedione and renin estimations.
  3. Every parent/patient with CAH should be informed of the relevant patient/parent support group.
  4. Genital surgery should be performed by a surgeon who is experienced in genital reconstruction in children. This may be a paediatric surgeon/paediatric urologist/ gynaecologist. Follow-up of gynaecological problems in both adolescence and adult life should be made available.
  5. Counselling should be given for the emergency treatment of intercurrent illnesses with appropriate written instructions given. These instructions and the necessary teaching should be repeated at intervals.
  6. There should be access to a clinical psychologist/psychiatrist throughout all stages of care. This involvement should preferably be initiated at diagnosis and particularly in relation to any genital surgery and psychosexual problems.
  7. There should be long-term seamless care throughout all age groups between childhood, adolescence and adulthood.
  8. For adults with CAH, there should be access to infertility treatment for women, counselling available by a clinical geneticist, appropriate testing of members of the family, the discussion of dexamethasone treatment in pregnancies, and bone densitometry available to assess osteopenia/osteoporosis.
  9. The parents/patient should be offered access to a second opinion in the event of their being unhappy about their/or their child's management. In the event of inadequate control, a blood endocrine analysis/profile and renin should be available.

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