Patients With Adrenal Insufficiency Hate Their Medication: Concerns and Stronger Beliefs About the Necessity of Hydrocortisone Intake Are Associated With More Negative Illness Perceptions

Jitske Tiemensma, Cornelie D. Andela, Alberto M. Pereira, Johannes A. Romijn, Nienke R. Biermasz, Adrian A. Kaptein

Context: Patients with adrenal insufficiency (AI) require daily and life-long hydrocortisone substitution with risks of under- and overreplacement, the necessity to adjust the dose in stressful situations, and a lack of clinical and biochemical parameters to assess optimal dosing. The spectrum of medication beliefs in patients with AI is currently unknown. Objective: The objective of the study was to examine the possible association between illness perceptions and medication beliefs about hydrocortisone (HC) in patients with AI. Design and Subjects: This was a cross-sectional evaluation of illness perceptions and medication beliefs in 107 patients with primary AI (n = 49), secondary AI after the treatment of Cushing's syndrome (n = 29), or treatment of nonfunctioning pituitary adenoma (n = 29). The Illness Perception Questionnaire-Revised and the Beliefs about Medicines Questionnaire were used for the assessment. Results: Stronger beliefs about the necessity of HC and stronger concerns about the adverse effects of HC were associated with attribution of more symptoms to AI, to the perception of AI being more cyclical, to the perception of more negative consequences of AI, and to the presence of stronger emotional representations (all P< .05). Furthermore, stronger beliefs about the necessity of HC intake were associated with feelings of less personal control over AI (P< .05). Stronger concerns about the adverse effects of HC were associated with lower perceived treatment control and lower illness coherence (both P< .05). In addition, patients with Cushing's syndrome reported stronger beliefs regarding the necessity of taking HC, compared with patients with Addison's disease (P= .039) or nonfunctioning pituitary adenoma (P< .001). Conclusion: Specific beliefs about the necessity of hydrocortisone replacement and concerns about its adverse effects were strongly associated with more negative illness perceptions. These specific beliefs differed, depending on the etiology of AI. These results need to be taken into account in the treatment of patients with AI and may serve to enable the development of psychosocial education/self-management programs aiming at improving quality of life.