Endocrine Abstracts

Background: Adrenal Insufficiency (AI) is associated with higher-than-expected mortality in children and young people (CYP) due to the risk of adrenal crisis. The risk is minimised by effective home management, supplemented by infrequent hospital-based clinical reviews. As CYP spend most time in home and school, it is important to optimise home management to improve long-term AI outcomes.

Methods: A quality improvement study was undertaken in the Manchester Adrenal clinic using a paper-based questionnaire to record parent perspectives of care of AI at home. The questionnaire included a combination of 5-point Likert scales, binary choices and free text.

Results: Parents of 12 CYP with AI of age 1-18 years and diagnosed for a median (range) 6 (0.2, 18.0) years, provided questionnaire responses. Of participants, 9 had congenital adrenal hyperplasia (CAH), 2 had secondary AI and 1 had familial glucocorticoid deficiency with adrenal crisis experienced in 8 (67%). Regular home monitoring was satisfactory with median Likert scores 2.0-3.0, not indicating difficulty with various aspects of home care, including “timely medications”, “dose adjustments for intercurrent illnesses”, and “training to administer emergency steroid injections”. However, free text responses such as “difficult to identify when he is becoming unwell”, indicated underlying parental concern. Top priorities for parents, noted in 67% of responses, were “timely medications”, “need to keep emergency steroid kit” and “adjust doses for intercurrent illness”. Parents noted weakness, fatigue, dizziness and nausea as the commonest symptoms requiring dose adjustment from “stressful experiences” and “intercurrent illnesses” in 10 (83%) participants but no symptom tracking by paper-based/digital tools was used. For a potential tool, parents preferred “need to track symptoms over time” and “assess activity/behaviour associated with symptoms” functionalities in 6 (50%) responses, correlating with the parent quote “anything that gives more immediate information as we wait for 6 months for appointments”.

Conclusion: Regular home management of AI is satisfactory, but parents remain concerned over potential escalation without facilities for symptom tracking at home. Our study highlights the need to develop an easy-to-use symptom tracking tool to optimize home care in CYP with AI.