Endocrine Abstracts (2008) 16 S24.4

Development of a disease-related QoL-questionnaire for Cushing's disease

Susan M Webb1, Xavier Badia2, Maria-Jose Barahona3, Annamaria Colao4, Christian J Strasburger5, Antoine Tabarin6, Maarten van Aken7, Rosario Pivonello8, Günther Stalla1, Steven W J Lamberts1 & Joan Glusman1


1Department of Endocrinology, Hospital Sant Pau, Autonomous University of Barcelona, and Centre for Biomedical Research on Rare Diseases (CIBERER Unit 747), Barcelona, Spain; 2Health Economics and Outcomes Research, IMS Health, and Centre for Biomedical Research on Rare Diseases (CIBERER Unit 747), Barcelona, Spain; 3Department of Molecular and Clinical Endocrinology and Oncology, ‘Federico II’ University, Naples, Italy; 4Department Endocrinology, Charité-Universitätsmedizin, Campus Mitte, Berlin, Germany; 5Department Endocrinology, Centre Hospitalier Universitaire de Bordeaux, Bordeaux, France; 6Department of Internal Medicine, ErasmusMC, Rotterdam, The Netherlands; 7Department of Endocrinology, Max-Planck-Institute of Psychiatry, Munich, Germany; 8Oncology Clinical Research, Novartis Pharmaceuticals Corporation, East Hanover, New Jersey, USA.


Chronic exposure to hypercortisolism significantly impacts on patient’s health and health-related quality of life (HRQoL). We developed a disease-generated questio-nnaire to evaluate HRQoL in Cushing’s syndrome (CS) (CushingQoL); in 125 (104 females) patients recruited in Spain, France, Germany, The Netherlands and Italy, clinical and hormonal data were collected and correlated with results of the generic SF-36 questionnaire, a question on self-perceived general health status and the CushingQoL score. 39 (31%) were currently hypercortisolemic and 47 (38%) adrenal insufficient. Psychometric evaluation was adequate: good feasibility (94%), reliability (Crohnbach’s alpha=0.87) and validity (unidimensionality and after 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 and SF-36 (Pearson’s correlation coefficient >0.597). Patients with hypercortisolism (defined as increased 24-h urinary free cortisol) scored worse (lower) than those without (44+22 vs 56+21, P=0.004). Linear regression analysis identified female gender and hypercortisolism as predictors for worse QoL. Conclusion: CushingQoL is useful to evaluate HRQoL in patients with CS and correlates with clinical parameters. Conducted but not funded by ERCUSYN.