Endocrine Abstracts

JOINT2081

Background: A critical component of health provision for a young person with adrenal insufficiency (AI) is education for the family and young person regarding management during sick day episodes. Deficits in patient education have been identified as a contributor to adrenal crisis risk.

Aim: The aim of this online survey distributed via the British Society for Paediatric Endocrinology (BSPED) paediatric endocrine nurse specialists (PENS) mailing list is to explore current clinical practice on provision of education in the United Kingdom.

Methods: An online survey of 25 questions was circulated to BSPED PENS between January-February 2024. These were multiple answer questions and there was also free text space for additional comments.

Results: The survey was circulated to eighty-eight PENS; fifty-one(58%) responses were received. In relation to the provision and structure of the initial education of sick day management, all provide individual face-to-face education of parents/guardians. In addition, eighteen (35%) provide online individual face-to face education, two (4%) provide group face-to-face and two (4%) group online education. Twenty-six (51%) have local departmental guidance on content of the AI education. All PENS provide education on symptoms of adrenal crisis, and management during moderate and severe sick day episodes. Forty-nine (96%) would discuss the underlying pathophysiology of AI and forty (78%) would discuss management during minor procedures. Fifty (98%) would educate and demonstrate injection of hydrocortisone at the first educational session, with forty-nine (96%) offering a practice injection. Fifty (98%) would provide written information to take away after the initial education; 43 (84%) provide a steroid emergency card whilst 25 (50%) provide information leaflets. Thirty-two (63%) do not provide any written information to non-English speaking families. Seven (14%) do not assess understanding after the initial education and 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 a consistent approach to 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 themself prior to transition. Additionally, non-English speaking families may be at a disadvantage as written information is not provided in over 60%. These results will help with the development of national standards of education for young people with adrenal insufficiency.