Self-management support in patients with adrenal insufficiency

Abstract

Objective

Patient education is an important intervention to prevent an adrenal crisis in patients with adrenal insufficiency. The objective of this study was to assess the knowledge of adjusting the dose of glucocorticoids in special circumstances in patients with adrenal insufficiency who had previously been educated on this topic. In patients with insufficient knowledge we tried to identify the underlying causes and care needs.

Design

Quantitative and qualitative study.

Methods

Adult patients with chronic primary and secondary adrenal insufficiency who received glucocorticoid stress management education were invited to participate in a telephone interview in which we tested their knowledge using hypothetical situations of physical and mental stress. In respondents with insufficient knowledge we conducted a qualitative semi-structured interview to elicit underlying reasons from patients’ perspective for their lack of knowledge and determine their care needs.

Results

Forty-three of the eighty-three patients who previously received education, had insufficient knowledge about how to act during stressful situations. We found a significant association between education level and level of knowledge after the educational consult. The following underlying factors were identified: unawareness of the seriousness of their condition, ineffective coping strategies, lack of experience with self-management skills and misconceptions. The most important care needs were: repetition of education, the use of guidelines, learning from experience and optimizing social support.

Conclusion

One or two educational consults is not effective to achieve adequate self-management skills. There is a need for structural follow-up where education is repeated and practical implementation of this knowledge is tested in order to identify potential inadequate action.

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