Endocrine Abstracts

Background and aims: A critical component of adrenal insufficiency (AI) management is education for the family and young person regarding sick day episode management. Deficits in patient education have been identified to contribute to adrenal crisis risk. The aim of this online survey distributed via the British Society for Paediatric Endocrinology (BSPED) paediatric endocrine nurse specialists (PENS) mailing list is to identify current clinical practice regarding education in the United Kingdom.

Methods: An online survey was circulated to BSPED PENS between January-February 2024.

Results: The survey was circulated to eighty-eight PENS;fity-one (58%) responses were received. In relation to the provision and structure of the initial education of sick day management (multiple responses allowed), all provide individual face-to-face education of parents/guardians, eighteen (35%) provide online individual face-to face education, two (4%) provide group face-to-face and group online education, respectively. Twenty-six (51%) have departmental guidance on content of the AI education. All PENS would cover symptoms of adrenal crisis, and management during moderate and severe sick day episodes. Forty-nine (96%) would discuss the underlying pathophysiology of AI of the young person and forty (78%) would discuss management during minor procedures. Fifty (98%) would demonstrate injection of hydrocortisone at the first educational session, with forty-nine (96%) offering a practice injection. Fifty (98%) would provide supplementary written information after the initial education however, provision of a steroid emergency card constituted as written information by some responders. Thirty-two (63%) do not provide any written information to non-English speaking families; seven (14%) do not assess understanding after the initial education. Twenty-five (49%) do not provide routine follow-up after the initial education. Twenty-one (41%) do not provide routine, regular refresher educational sessions. Twenty (39%) PENS do not educate the young person themselves in preparation for transition.

Conclusion: This national survey of PENS identified greater consistency in the initial education of parents/guardians of a young person with AI. However, we identified variability in provision of routine refresher sessions and education of the young person prior to transition. Additionally, non-English speaking families maybe at a disadvantage as written information is not provided in over 60%.