Table 1.

Measuring success.

Potential medical outcomes:

(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 [women], testicular adrenal

rests [men], 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