Abstract

Illness perceptions pertain to the beliefs patients develop about their illness, and these views are determinants of behavior directed at the illness. Illness perceptions are determinants of quality of life (QoL). QoL remains impaired in patients with biochemical control of acromegaly, but illness perceptions were never studied in these patients. The aim of the current study was to explore illness perceptions and their association with QoL in patients with long-term biochemical control of acromegaly. This was a cross-sectional study. We included patients with long-term biochemical control of acromegaly (n = 81), and compared them with Dutch reference populations: patients with acute pain (n=35) or chronic pain (n = 63), Cushing's syndrome (n = 52), chronic obstructive pulmonary disease (n = 171), and vestibular schwannoma (n = 80). Illness perceptions were evaluated using the Illness Perception Questionnaire Revised, and QoL was assessed with the Physical Symptoms Checklist, EuroQoL-5D, and AcroQoL. Illness perceptions showed strong correlations with QoL. Patients after remission of acromegaly have a good understanding of their disease, but they experience a lack of personal control and are not likely to seek medical care compared with patients with acute disease (all P < 0.01). Illness perceptions of patients after long-term remission of acromegaly are affected and strongly related to QoL. Patients reported more negative illness perceptions than patients with acute illness but more positive illness perceptions than patients with chronic diseases. Additional research is necessary to assess whether a self-management intervention might help in improving affected illness perceptions and thereby improve QoL.

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