Eur J Endocrinol
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DOI: 10.1530/EJE-07-0762
European Journal of Endocrinology, Vol 158, Issue 5, 623-630
Copyright © 2008 by Society of the European Journal of Endocrinology
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CLINICAL STUDIES

Evaluation of health-related quality of life in patients with Cushing's syndrome with a new questionnaire

S M Webb, X Badia1, M J Barahona, A Colao2, C J Strasburger3, A Tabarin4, M O van Aken5, R Pivonello2, G Stalla6, S W J Lamberts5 and J E Glusman7

Department of Endocrinology, Hospital Sant Pau, Centre for Biomedical Research on Rare Diseases (CIBERER Unit 747), Autonomous University of Barcelona, Pare Claret 167, 08025 Barcelona, Spain1 Health Economics and Outcomes Research, IMS Health, Centre for Biomedical Research on Rare Diseases (CIBERER Unit 747), 08034 Barcelona, Spain2 Department of Molecular and Clinical Endocrinology and Oncology, ‘Federico II’ University, 80131 Naples, Italy3 Department of Endocrinology, Charité-Universitätsmedizin, Campus Mitte, 10117 Berlin, Germany4 Department of Endocrinology, Centre Hospitalier Universitaire de Bordeaux, 33600 Pessac, France5 Department of Internal Medicine, Erasmus MC, 3000DR Rotterdam, The Netherlands6 Department of Endocrinology, Max-Planck-Institute of Psychiatry, 80804 Munich, Germany7 Oncology Clinical Research, Novartis Pharmaceuticals Corporation, East Hanover, 07936-1080 New Jersey, USA

(Correspondence should be addressed to S M Webb; Email: swebb{at}santpau.es)

Chronic exposure to hypercortisolism has significant impact on patient's health and health-related quality of life (HRQoL), as demonstrated with generic questionnaires. We have developed a disease-generated questionnaire to evaluate HRQoL in patients with Cushing's syndrome (CS; CushingQoL).

Objective: Validate the CushingQoL questionnaire in patients with CS in clinical practice conditions.

Design: Observational, international, cross-sectional study.

Methods: A total of 125 patients were recruited by 14 investigators from Spain, France, Germany, The Netherlands, and Italy over a 2-month period. Clinical and hormonal data were collected and correlated with results of the generic short form 36 (SF-36) questionnaire, a question on self-perceived general health status and the CushingQoL score.

Results: A total of 107 patients were pituitary-dependent and 18 adrenal-dependent CS; 104 (83%) were females, mean age 45 years (range 20–73 years); 39 (31%) were currently hypercortisolemic; and 47 (38%) adrenal insufficient. In clinical practice, CushingQoL was feasible (117; 94% of patients fully responded to the questionnaire in a mean time of 4 min), reliable (Crohnbach's {alpha}=0.87), and valid (factorial analysis demonstrated unidimensionality and Rasch analysis lead to a final version with 12 items). A significant (P<0.001) correlation was observed between CushingQoL score and patients self-perceived general health status and dimensions of SF-36 (Pearson's correlation coefficient ≥0.597). Patients with current hypercortisolism scored worse (lower) than those without (44±22 vs 56±21, P=0.004). Linear regression analysis identified female gender and hypercortisolism as significant predictors for worse QoL.

Conclusion: CushingQoL is useful to evaluate HRQoL in patients with CS and correlates with clinical parameters.






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