| name | es-acthd-patient-education |
| description | This skill outlines the essential patient education points for childhood cancer survivors with adrenocorticotropic hormone deficiency (ACTHD), covering stress‑dose glucocorticoid instructions, emergency injectable glucocorticoid administration, and the need for medical alert identification and an emergency kit. It is triggered when a clinician asks, “What should I teach this patient about adrenal crisis management?” or “How do I prepare this survivor for potential adrenal insufficiency?” |
Educate on ACTHD emergency management
STEP 1 — Gather Information
Confirm ACTHD diagnosis (e.g., subnormal cortisol on ACTH stimulation test), note patient age, developmental stage, caregiver availability, prior adrenal insufficiency education, current glucocorticoid replacement regimen, and comorbidities that may affect crisis recognition. If ACTHD is confirmed, proceed to rule‑in step; otherwise, provide general follow‑up education.
STEP 2 — Rule In / Rule Out
Determine whether ACTHD is definitively diagnosed. If ACTHD is ruled out (no confirmed deficiency), deliver standard endocrine surveillance counseling and end the skill. If ACTHD is ruled in, advance to stratification.
STEP 3 — Classify or Stratify
Stratify by the patient’s ability to self‑administer emergency glucocorticoid (independent adolescent vs. young child requiring caregiver) and by access to emergency medical services (remote vs. urban). This determines whether to emphasize caregiver training versus self‑administration and the complexity of kit instructions.
STEP 4 — Decide
Deliver tailored education: (a) stress‑dose rules (double oral glucocorticoid for fever > 38 °C or vomiting; triple for severe illness, surgery, or inability to take oral meds); (b) demonstrate how to draw up and inject emergency IM/SC hydrocortisone (e.g., 50 mg/m² or 100 mg for children, 200 mg for adults) and when to give (vomiting, inability to take oral meds, signs of shock); (c) instruct to wear a medical alert bracelet/necklace stating “Adrenal Insufficiency – Requires Stress Dose Steroid”; (d) prescribe an emergency kit with injectable glucocorticoid, syringe, alcohol swabs, and instructions, and advise to check expiration every 6 months.
Clinical Guardrails / Mimics / Pitfalls
Do not rely solely on oral dose increases during a crisis; delayed injection can be fatal. Avoid confusing stress‑dose with routine dosing. Do not omit caregiver training if the patient is young. Do not forget to renew the emergency kit and verify the patient knows not to use it for non‑emergency situations. Mimics such as hypoglycemia, sepsis, or gastroenteritis can present similarly; if adrenal insufficiency is suspected, give glucocorticoid promptly while seeking emergency care.
Concrete Clinical Example
A 14‑year‑old survivor of a craniopharyngioma treated with 35 Gy hypothalamic‑pituitary radiation presents for routine follow‑up. Laboratory testing shows a subnormal cortisol response to ACTH stimulation, confirming ACTHD. The clinician verifies the diagnosis, notes the patient is independent and lives nearby, then provides stress‑dose instructions (double hydrocortisone for fever > 38 °C, triple for vomiting or inability to take oral meds), demonstrates IM injection of 100 mg hydrocortisone, prescribes a medical alert bracelet, and supplies an emergency kit with instructions to replace the vial annually.
Source: Endocrine Society Clinical Practice Guideline – Hypothalamic Pituitary and Growth Disorders in Survivors of Childhood Cancer, Endocrine Society, 2018, doi:10.1210/jc.2018-01175
