Negative illness perceptions are associated with impaired quality of life in patients after long-term remission of Cushing's syndrome

Abstract

Objective: Illness perceptions pertain to the pattern of beliefs patients develop about their illness. Illness perceptions are determinants of quality of life (QoL). Factors contributing to persisting impaired QoL after Cushing's syndrome (CS) remain largely unknown. Therefore, the objective of this study was to explore illness perceptions, as potentially modifiable psychological factors, in relation to QoL in patients with long-term remission of CS. Design: Cross-sectional study. Methods: We included patients with long-term remission of CS (nZ52). Illness perceptions were evaluated using the Illness Perception Questionnaire (IPQ)-Revised, and QoL was measured using the physical symptom checklist, EuroQoL-5D (EQ-5D), and the CushingQoL. Reference data were derived from recent studies and included patients with vestibular schwannoma (nZ80), acute (nZ35) or chronic (nZ63) pain, and chronic obstructive pulmonary disease (COPD; nZ171). Results: Illness perceptions showed a strong correlation with QoL. Patients with CS scored distinctively more negative on the IPQ compared with patients with vestibular schwannoma and patients with acute pain, and also reported more illness-related complaints (all P!0.01). There were also some differences in illness perceptions between patients with CS and patients with chronic pain and patients with COPD, but there was no distinct pattern. Conclusions: Patients after long-term remission of CS report more negative illness perceptions compared with patients with other acute or chronic conditions. Further research is needed to assess whether QoL in CS can be improved by addressing these illness perceptions, for example, by a self-management intervention program.

Psychometric performance of the CushingQoL questionnaire in conditions of real clinical practice

“…Similar results were found in recent studies using CushingQoL, with a mean score of 39G17 for active patients and 52G18 for cured patients (17,18). Nevertheless, up to two-thirds of cured patients still have limitations in the dimensions evaluated by the EuroQoL-5D profile, especially for pain/discomfort, which tends to be higher in surgically cured patients (65%) than in active disease (56%).…”

“…Patients who were adrenal insufficient after surgery and required hydrocortisone did not differ in the CushingQoL score and EuroQoL-VAS compared with those who were eucortisolemic. Previous studies have reported no effects of hydrocortisone substitution on QoL in CS (3,18) but also that adrenal insufficiency in general, as well as Addison's disease and hypopituitarism, are related to worse HRQoL (4,20). No effect of cortisol-lowering drugs, like metyrapone and ketoconazole, was observed when comparing patients who were treated or not with these drugs, even though the groups were small.…”

Impaired quality of life in patients in long-term remission of Cushing's syndrome of both adrenal and pituitary origin: a remaining effect of long-standing hypercortisolism?

“…This may explain the chronic cognitive impairments described in patients in long-term remission of CS (4,34), which may negatively influence QOL. Other explanations for the impaired QOL could be the previous experience of suffering a severe illness, ineffective coping strategies or illness perceptions (35,36). Future research will have to determine the exact causes of impaired QOL in patients in long-term remission of CS.…”

Total score or subscales in scoring the acromegaly quality of life questionnaire: using novel confirmatory methods to compare scoring options

“…The physical symptoms of acromegaly include frontal bossing, swelling of extremities, and swelling of soft tissue (i.e., heart, intestines, and tongue) (2) resulting from chronic GH overexposure. Psychological issues include negative illness perceptions (3) and a decreased quality of life (QoL) patients can be treated with suppressive medication, such as somatostatin analogs (1) and/or GH receptor agonists (5). Upon remission of acromegaly, physical and psychological symptoms usually improve, although QoL often does not return to premorbid levels (6,7).…”