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.
- 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.
- The facilities available must include easy access to laboratories
measuring the important hormones in CAH, including 17-Hydroxyprogesterone,
androstenedione and renin estimations.
- Every parent/patient with CAH should be informed of the relevant
patient/parent support group.
- 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.
- 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.
- 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
- There should be long-term seamless care throughout all age groups
between childhood, adolescence and adulthood.
- 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.
- 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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