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Potential medical outcomes:
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|
(i) Quality-of-life using validated surveys
|
|
(ii) Biochemical control of CAH
|
|
(iii) Symptomatic control of androgen excess (hair loss, acne, hirsutism, amenorrhea, etc.)
|
|
(iv) Compliance
|
|
(v) Adult height
|
|
(vi) Frequency of adrenal crises/hospitalizations
|
|
(vii) Reproductive function
|
(viii) Comorbidities (obesity, hypertension, metabolic syndrome, hirsutism/polycystic ovarian syndrome  , testicular adrenal
|
rests  , and myelolipomas)
|
|
Potential surgical outcomes (women):
|
|
(i) Number and types of surgeries
|
|
(ii) Complications (vaginal stenosis, urinary symptoms, urinary tract infections, etc.)
|
|
(iii) Functional and cosmetic results
|
|
(iv) Patient satisfaction
|
|
(v) Menstrual regularity, fertility
|
|
Potential behavioral health/psychosexual outcomes:
|
|
(i) Patient and family adjustment
|
|
(ii) Psychopathology (depression, anxiety, obsessive-compulsive disorder, eating disorders, substance abuse, etc.)
|
|
(iii) Sexual function
|
|
(iv) Gender identity
|
, testicular adrenal
, and myelolipomas)