Endocrine Abstracts

JOINT900

Background: Education of parents and young people (YP) with adrenal insufficiency (AI) in relation to sick day management is crucial and may help prevent adrenal crisis. In the UK, there is currently no national standards on education of sick day management in YP with AI.

Aims: To investigate the perceptions of YP with AI and their parents regarding experiences of and preferences for education and information on sick day management.

Methods: Online surveys and online focus groups with YP with AI (11–16 years), and their parents. Recruitment UK wide was facilitated through patient support groups. Survey responses were analysed using descriptive statistics and content analysis. Focus group data were analysed using thematic analysis.

Results: Twelve YP with AI, and 108 parents shared their views in the online survey. Five YP and 12 parents took part in online focus groups. YP reported gaps in their sick day management knowledge via the survey: ‘I know a bit’ (6/12, 50%) or ‘I do not know much’ (3/12, 25%). Some YP had not received education. Some received education at diagnosis when the YP were very unwell. YP in the surveys and focus groups reported that information and education should be more age-appropriate with child friendly leaflets and videos addressed to them (not just their parents) and covering injection technique. Some parents on the survey (34/108, 32%) reported that education did not equip them with the knowledge and skills needed to manage their child’s sick day episodes. Despite education, some parents expressed uncertainty around how to spot signs of adrenal crisis (40/108, 37%) and did not feel they had the knowledge or skills to manage their child’s sick days (36/108, 33%). The majority of parents (76/108, 70%) had received no refreshers following initial education. Parents wanted to gain information by talking with health professionals (88/108, 82%) or via instructional videos (72/108, 67%). Parents in the focus groups felt that education should be delivered separately to the time of diagnosis or acute illness and should include a follow-up appointment or regular refresher. Parents would like the choice of whether education is conducted on their own or with their child so they can ask difficult questions and access more opportunities for peer support.

Conclusion: This study highlights that many parents and YP with AI have unmet information needs regarding sick day management. Developing national standards of education of sick day management of AI should be prioritized.