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Transition of Care

Successful transition of care begins well before adulthood

Recent studies suggest the following approach1-3:

Age 12

Discuss transition of care process with patient and caregiver

Consider offering patient time alone during visits; start annual review of emergency medicine

Consider beginning annual assessment for transition of care readiness

Age 17

Identify a goal age for transition of care; prepare for independent living, college, entering the workforce

Before transition of care

Meet with patient and patient’s adult care team

3-6 months after transition of care

Check in with patient and patient's adult care team

50% of patients with CAH were lost to follow-up when transitioning from a pediatric to an adult endocrinologist4

Patients who answer yes to most of these questions may be considered ready to transition to an adult endocrinologist.5

I know how each of my medications works and what to do if things don’t seem to be going right.

I know what to do with my medications if I get sick.

I can refill a prescription by myself.

I can make a doctor’s appointment by myself.

I feel confident that each one of my medicines will help me.

I understand my doctor’s/nurse’s instructions about the medicine I take.

I know if I am reaching my health goals.

I have friends or family who can help me with my medical care if I need it.

I know what my insurance covers.

I can recount my medical history.

What would better help you with your CAH patient care?

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Explore the potential of the CRF pathway for androgen management6

More on the CRF pathway

REFERENCES

  1. Dennis J, Pitts L, Matalka L, Mays LC. Comprehensive adolescent healthcare transition program for congenital adrenal hyperplasia: a quality improvement initiative. Health Care Transitions. 2024;2:100057. doi:10.1016/j.hctj.2024.100057
  2. Balagamage C, Arshad A, Elhassan YS, et al. Management aspects of congenital adrenal hyperplasia during adolescence and transition to adult care. Clin Endocrinol (Oxf). Published online November 14, 2023. doi:10.1111/cen.14992
  3. White PH, Cooley WC. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2018;142(5):e20182587. doi:10.1542/peds.2018-2587
  4. Gleeson H, Davis J, Jones J, O'Shea E, Clayton PE. The challenge of delivering endocrine care and successful transition to adult services in adolescents with congenital adrenal hyperplasia: experience in a single centre over 18 years. Clin Endocrinol. 2013;78(1):23-28. doi:10.1111/cen.12053
  5. Ekbom K, Lajic S, Falhammar H, Nordenström A. Transition readiness in adolescents and young adults living with congenital adrenal hyperplasia. Endocr Pract. 2023;29(4):266-271. doi:10.1016/j.eprac.2023.01.010
  6. Mallappa A, Merke DP. Management challenges and therapeutic advances in congenital adrenal hyperplasia. Nat Rev Endocrinol. 2022;18(6):337-352. doi:10.1038/s41574-022-00655-w