Endocrine Abstracts

Introduction: Adequate hormone replacement therapy in adrenal insufficiency is essential. Patients should have basic knowledge about their condition and what to do in situations which could trigger an adrenal crisis. Education on how and when hydrocortisone replacement therapy should be adjusted as well as instruction and practice an emergency injection are considered important measures to prevent an adrenal crisis. A standardized nurse-led group-based education programme (GEP) was developed based on a national guideline.

Methods: Sixty-seven patients, who attended the GEP from September 2018 until April 2020, were recruited to fill in a questionnaire in retrospect. The questionnaire categories assessed patients’ experiences with the GEP on content, approach by the clinical nurse specialist and applicability in daily life. The questionnaire contained self-reported marks before and after the GEP, multiple choice questions and open questions. In addition to the questionnaire, electronic medical records for demographic data were studied.

Results: Of the 67 patients 48 responded, of whom 7 indicated they did not wanted to participate. Thirty-nine patients completed the part about the GEP-content. Three patients scored the content moderate, nine patients self-assessed the highest achievable score. On average, the patients scored a 8.6 on a scale of 10. The average reported score of 37 patients about the approach during the GEP was a 9.6 on a scale of 10. Twenty-six of the 37 patients gave the clinical nurse specialists the highest possible score. The part about applicability to apply the education in daily life was filled in by 38 patients. In this category the average score was above adequate, with a 7.7 on a scale of 10. Two patients scored below moderate, another seven patients scored average and 29 patients scored above average. Fifteen patients wrote additional comments. Strikingly, eight patients noted they would like the GEP to be given repeatedly. The greatest advantage of a group-based education reported by patients is sharing experiences and having contact with patients with the same condition. The self-reported marks were significantly improved after the GEP (p 0.003).

Conclusion: Overall, the patients who attended a two-hour group-based education programme were positive about the content of the education programme, the approach by the clinical nurse specialists and applicability of education in daily life. Repeated education and training was explicitly indicated by a large proportion of participating patients. Whether the results were affected by, for example, age or origin of adrenal insufficiency, needs to be further investigated.