Endocrine Abstracts (2011) 26 P215

Illness perceptions, quality of life and self-reported physical symptoms in patients after long-term remission of Cushing's syndrome

J Tiemensma1, A A Kaptein2, A M Pereira1, J W A Smit1, J A Romijn1 & N R Biermasz1


1Department of Endocrinology and Metabolism, Leiden University Medical Center, Leiden, The Netherlands; 2Department of Medical Psychology, Leiden University Medical Center, Leiden, The Netherlands.


Context and objective: Illness perceptions pertain the pattern of beliefs patients develop about their illness. These views are determinants of behavior directed at the illness. Illness perceptions are determinants of quality of life (QoL). QoL remains impaired in patients after treatment of endogenous hypercortisolism, however, illness perceptions were never studied in these patients. The objective of the current study was to explore illness perceptions and its relation with QoL in patients treated for Cushing’s syndrome.

Design: Cross-sectional study.

Subjects: We included patients in long-term remission of Cushing’s syndrome (n=52), and compared them with five reference populations: vestibular schwannoma patients (n=80), patients with head and neck cancer (n=68), patients with acute (n=35) or chronic (n=63) pain, and patients with COPD (n=171). Illness perceptions were evaluated using the illness perception questionnaire-revised. The protocol was approved by the Medical Ethics Committee.

Results: Patients after long-term remission of Cushing’s syndrome reported more negative illness perceptions compared to reference samples. Patients with Cushing’s syndrome scored distinctively worse compared to patients with vestibular schwannoma, patients with head and neck cancer, and patients with acute pain, and also reported more illness related complaints. There were also some differences in illness perceptions between patients with Cushing’s syndrome and patients with chronic pain and patients with COPD, but there was no distinct pattern. Illness perceptions showed a strong correlation with QoL.

Conclusion: Patients after long-term remission of Cushing’s syndrome report more negative illness perceptions compared to several reference populations. Future studies have to assess whether self-management intervention programs will improve these illness perceptions and thereby QoL.

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