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

• Published in: Clinical endocrinology (Oxford) Vol. 88; no. 6; pp. 787 - 798
• Main Authors: Valassi, Elena, Feelders, Richard, Maiter, Dominique, Chanson, Philippe, Yaneva, Maria, Reincke, Martin, Krsek, Michal, Tóth, Miklós, Webb, Susan M., Santos, Alicia, Paiva, Isabel, Komerdus, Irina, Droste, Michael, Tabarin, Antoine, Strasburger, Christian J, Franz, Holger, Trainer, Peter J, Newell‐Price, John, Wass, John AH, Papakokkinou, Eleni, Ragnarsson, Oskar, Ambrogio, A, Aranda, G, Arosio, M, Balomenaki, M, Beck‐Peccoz, P, Berr‐Kirmair, C, Bolanowski, M, Bollerslev, J, Thierry, B, Carvalho, D, Cavagnini, F, Christ, E, Demtröder, F, Denes, J, Dimopoulou, C, Dreval, A, Dusek, T, Erdinc, E, Evang, JA, Fazel, J, Fica, S, Ghigo, E, Goth, M, Greenman, Y, Greisa, V, Halperin, I, Hanzu, FA, Hermus, A, Johannsson, G, Kamenicky, P, Kasperlik‐Zaluska, A, Kirchner, J, Darko, K, Kraljevic, I, Kruszynska, A, Lambrescu, I, Lang, S, Luger, A, Marpole, N, Martin, S, Martinie, M, Moros, O, Orbetzova, M, Pecori Giraldi, F, Pereira, AM, Pickel, J, Pirags, V, Reghina, AD, Roberts, M, Roerink, S, Roig, O, Rowan, C, Rudenko, P, Sahnoun, MA, Salvador, J, Sigurjonsdottir, HA, Skoric Polovina, T, Smith, R, Stachowska, B, Stalla, G, Tőke, J, Ubina, E, Vinay, S, Wagenmakers, M, Werner, S, Young, J, Zdunowski, P, Zopf, K, Zopp, S, Zosin, I
• Format: Journal Article
• Language: English
• Published: England Wiley Subscription Services, Inc 01-06-2018; Wiley
• Subjects: Adenoma; adrenalectomy; Adrenocorticotropic hormone; brain; clinical-practice; cure; Cushing syndrome; Cushing's syndrome; Diagnosis; Endocrinology & Metabolism; Endocrinology and Diabetes; Endocrinology and metabolism; Endokrinologi och diabetes; ERCUSYN; Glucocorticoids; health-related quality of life; Human health and pathology; hypercortisolism; impairments; Life Sciences; management; Nervous system diseases; Patients; Pituitary; psychopathology; Quality of life; questionnaire; Remission; Cushing's syndrome; ERCUSYN; health-related quality of life
• ISSN: 0300-0664; 1365-2265
• DOI: 10.1111/cen.13600

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.