Much to be desired in self‐management of patients with adrenal insufficiency

Abstract

We assessed self-management in patients with adrenal insufficiency and patient-related factors that affect self-management. A self-report questionnaire was developed to assess self-management. The questionnaire contained three main topics, including: (i) medication adherence; (ii) anticipated measures; and (iii) dose adaptation during medical emergencies. Sixty per cent of the patients (n = 116) completed the questionnaire. The score for the medication adherence was 3.5 out of 4. The score for anticipated measures was 3.4 out of 5, and dose adaptation during medical emergencies was 1.9 out of 3. Older age was a positive predictor for all three self-management topics. The female sex was a positive predictor for anticipated measures and dose adaptation during medical emergencies. High education level was associated with higher scores on dose adaptation during medical emergencies in women, not in men. Education level did not affect other self-management aspects. There seems to be a need to improve self-management in these patients. Self-management might be improved by continuous education, and involvement of endocrine nurses and nurse practitioners is likely to be a key factor in the effectiveness of patient education.

Perspective of pharmaceutical practice in adrenal insufficiency: An integrative review

“…Calero and Padilha (2014), in a review about the encouragement of therapeutic education of chronic patients, highlights the importance of the support of all disciplines to strengthen the patient's education. They emphasize the role of education as treatment and reinforce that, in regards to chronic patients, it is not about the cure but about teaching self-care, a perspective ratified by other studies (Repping-Wuts, 2013;Van Eck, et al, 2016). The The role of interdisciplinary work is also highlighted by several studies (Elshimy, et al, 2020;Rathbun, et al,2020;Munir, et al, 2021;Huecker, Bhutta & Dominique, 2021).…”

Self-management in adrenal insufficiency — towards a better understanding

“…So far, there is only sparse data on the patients' view of their health care situation [6,10,12,16], and hardly any information on AI patients' knowledge of their disease. Aim of the present study was to assess AI patients' knowledge and special needs for patient education through a multiple choice question (MCQ)-based survey and to compare the results with physician's expertise.…”

“…Detailed information is a cornerstone of patient education and treatment in AI [5]; affected individuals should be empowered to self-treatment and adequate dose adjustment to reduce morbidity and mortality [6]. Accordingly, it has been recommended that every AI patient has an emergency kit [2,7,8] as well as an emergency ID [9].…”

Using the behaviour change wheel and person-based approach to develop a digital self-management intervention for patients with adrenal insufficiency: the Support AI study protocol

“…Several studies found that 26% – 38% of patients with AI did not adjust their glucocorticoid dose for “sick days” ( 22 , 27 – 31 ) and only 60% of patients carried a medical-alert ID ( 28 , 29 ). Approximately 70% of patients had an emergency hydrocortisone injection kit ( 5 , 15 ) but only 12% managed to self-inject when they experienced an adrenal crisis ( 15 ), while only 19% were trained to self-inject ( 5 ).…”