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CAH patients require long-term transition from pediatric to adult care
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LAS VEGAS — When transitioning pediatric patients with congenital adrenal hyperplasia to adult care, physicians should treat the process as a long-term commitment rather than a singular event, according to a presenter at the AACE 23rd Annual Scientific & Clinical Congress.
“In the transition to adulthood, it’s definitely tricky ... There’s a shift in treatment goals,” Deborah P. Merke, MD, chief of pediatric consult with the National Institutes of Health Clinical Center, said here. “Transition is most successful when viewed as a process that actually takes years rather than a one-time event.”
As the majority of CAH patients are diagnosed in infancy and many females require surgical correction of their genitalia, the needs and care of these patients changes as they age, Merke explained. In the case of surgical repair in females, she said it has been shown that late disclosure of that procedure can be detrimental to the patient.
“We do need to educate the girls very early that they had surgery,” Merke said. “This should be a team approach with the family.”
She explained that there should be age-appropriate explanations geared toward the patient’s age and developmental level, culminating in full disclosure by age 16 years because comprehension of a patient’s genital anatomy and surgical history promotes a healthy self-image. While the endocrinologist in charge of the patient’s care should be prepared to discuss sexual complications, Merke suggested having a gynecologist on the care team for referral.
In male patients, physicians should screen for testicular adrenal rest and bone mineral density to ensure proper guidance of care, she added.
With adult patients with CAH, Merke said it is difficult to transition them from pediatrician or family doctor to endocrinologist; one study showed fewer than 10% of adults with CAH were under the care of an endocrinologist.
“An extended period of support is essential,” she said. “Lots of different aspects of the disease can lead to quality of life issues.”
For more information: Merke DP. W11. Presented at: AACE 23rd Annual Scientific & Clinical Congress; May 13-18, 2014; Las Vegas, Nevada.
Disclosures: Merke reports a financial relationship with Diurnal Limited.