ESPE Abstracts

Background: Management of adrenal insufficiency(AI) during sick-day episodes require adjustment of oral glucocorticoid therapy or administration of intramuscular injection to prevent adrenal crisis. Education of families of a young person with AI on management during sick day episode is therefore critical.

Aim: To critically appraise patient education of sick-day episode management of adrenal insufficiency by conducting

• A systematic review of structured education.

• A systematic search of online educational resources available on Google and YouTube.

Methods: A systematic search was conducted in four databases(Medline, Embase, Web of Science, CINAHL). Systematic searches of Google and YouTube resources were then conducted. The readability of the web-page resources identified from Google was then assessed using the Flesch-Kinkaid reading ease score.

Results: Systematic search of the literature identified three publications that reported structured education for AI, all of whom involved adult patients. All were delivered face to face. Two were delivered by endocrinologists/nurses(single 2-hour small group training and a single 3-hour educational meeting) and one by pharmacists(three-step programme taught over 3 consecutive days). All provided the opportunity to practise injections. All programmes led to improved knowledge and patient satisfaction. A total of 16 resources were identified via Google and 17 via YouTube. 9/16(56%) identified via Google were developed by health care providers/researchers. Most of YouTube resources were developed by patient groups(6/17, 35%) or individual patients(5/17, 29%). Fifteen of the 16(94%) web-pages provided information about symptoms of an adrenal crisis; 7/16(44%) discussed how to manage oral sick-day dosing, 3(19%) discussed how to self-inject hydrocortisone. Almost half of eligible web-pages(7/16, 44%) were given a Flesch-Kinkaid score of 30-50 which translates as “difficult to read”. Eleven out of the 17 videos(65%) included information about the symptoms of an adrenal crisis; 6/17(35%) discussed how to manage oral sick day dosing, 1(6%) discussed how to self-inject hydrocortisone.

Conclusion: Evidence of a structured educational programme for patients diagnosed with AI in the published literature is limited, are none for paediatric patients and their families. Most educational resources obtained through a systematic search of Google or YouTube did not address several clinically important points. The readability of almost half of the resources available on google were aimed at those with tertiary university education or higher. There is a need to understand the educational needs of families and young people with AI to co-develop accessible educational resources.