Worse Health‐Related Quality of Life at long‐term follow‐up in patients with Cushing's disease than patients with cortisol producing adenoma. Data from the ERCUSYN

Abstract

Summary Objective Hypercortisolism in Cushing's syndrome (CS) is associated with impaired health‐related quality of life (HRQoL), which may persist despite remission. We used the data entered into the European Registry on Cushing's syndrome (ERCUSYN) to evaluate if patients with CS of pituitary origin (PIT‐CS) have worse HRQoL, both before and after treatment than patients with adrenal causes (ADR‐CS). Methods Data from 595 patients (492 women; 83%) who completed the CushingQoL and/or EQ‐5D questionnaires at baseline and/or following treatment were analysed. Results At baseline, HRQoL did not differ between PIT‐CS (n = 293) and ADR‐CS (n = 120) on both EuroQoL and CushingQoL. Total CushingQoL score in PIT‐CS and ADR‐CS was 41 ± 18 and 44 ± 20, respectively (P = .7). At long‐time follow‐up (>1 year after treatment) total CushingQoL score was however lower in PIT‐CS than ADR‐CS (56 ± 20 vs 62 ± 23; P = .045). In a regression analysis, after adjustment for baseline age, gender, remission status, duration of active CS, glucocorticoid dependency and follow‐up time, no association was observed between aetiology and HRQoL. Remission was associated with better total CushingQoL score (P < .001), and older age at diagnosis with worse total score (P = .01). Depression at diagnosis was associated with worse total CushingQoL score at the last follow‐up (P < .001). Conclusion PIT‐CS patients had poorer HRQoL than ADR‐CS at long‐term follow‐up, despite similar baseline scoring. After adjusting for remission status, no interaetiology differences in HRQoL scoring were found. Age and presence of depression at diagnosis of CS may be potential predictors of worse HRQoL regardless of CS aetiology.

Quality of Life in Patients With Cushing's Disease

“…In CD QoL is worse than in controls and patients with any other kind of pituitary adenomas (35,43). QoL is similarly impaired in pituitary-dependent CD and other causes of CS, as shown in a cohort of patients from different European countries included in the ERCUSYN database using CushingQoL and EuroQoL (12,34).…”

“…However, in a regression analysis etiology was not related to QoL after adjustment for baseline age, gender, remission status, duration of active CS, glucocorticoid dependency and follow-up time. Furthermore, when different symptoms at diagnosis were included in a regression analysis (hypertension, diabetes mellitus, muscle weakness, and depression) only depression was associated with a worse CushingQoL score at last follow-up visit (34).…”

“…It is now clear that CS and CD have a deleterious effect on the QoL of the affected patients, although the extent may vary from one patient to another. Different determinants have been described that impact on quality of life (12,22,29,(31)(32)(33)(34)(35)(36)(37)(38)(39)(40)(41)(42). A summary can be found in Figure 1.…”

Patient-Centered Outcomes with Pituitary and Parasellar Disease

“…Features like female gender, older age, hypopituitarism, active disease, depressive symptoms, negative illness perceptions, prior radiotherapy, tumor recurrence, and frequent checkups negatively affect perceived health and QoL, and are common to all pituitary diseases. Other features that affect QoL are specific to acromegaly, CD, or adult growth hormone deficiency, situations where QoL is more impaired than in NFPA or prolactinomas [1,[12][13][14][15][16][17][18][19][20].…”

Corrigendum: Worse Health‐Related Quality of Life at long‐term follow‐up in patients with Cushing's disease than patients with cortisol producing adenoma. Data from the ERCUSYN

“…In the Appendix section from Valassi et al, an error was introduced to an author name in the collaborator list which should be spelt as D. Kastelan.…”