ECE2007 Poster Presentations (1) (659 abstracts)
Development and validation of a questionnaire to evaluate health-related quality of life in patients with Cushing’s syndrome
Susan M Webb 1 , Xavier Badia 2 , Maria- Jose Barahona 1 , Annamaria Colao 3 , Christian J Strasburger 4 , Antoine Tabarin 5 , MO van Aken 6 , Rosario Pivonello 3 , Gunther Stalla 7 , O Chabre 8 , Steven WJ Lamberts 6 & Joan E Glusman 9
1Hospital S Pau, UAB, Barcelona, Spain; 2IMS, Barcelona, Spain; 3University Federico II, Naples, Italy; 4Charité Campus Mitte, Berlin, Germany; 5Hôpital Haut Lévêque-CHU, Bordeaux, France; 6Erasmus Medical Center, Rotterdam, Netherlands; 7Max-Planck-Institut für Psychiatrie, Munich, Germany; 8CHU Hopital Nord, Grenoble, France; 9Novartis, New Jersey, United States.
Chronic exposure to hypercortisolism has a significant impact on patient’s health and Health-Related Quality of Life (HRQoL), as demonstrated with generic questionnaires. Objective: Develop and validate a disease-generated questionnaire to evaluate HRQoL in patients with Cushing’s syndrome-CS- (Cushing QoL). Methods: After a literature review, interviews with expert endocrinologists and 10 patients identified HRQoL domains and clinical aspects of the disease; an analysis of the content allowed a qualitative reduction of items and design of version-1 (V-1) of the questionnaire, which was administered to 5 Spanish patients to detect and correct comprehension problems (cognitive debriefing); this allowed the obtaining of the V-2 version, the items of which were scored by 10 endocrinologists in terms of importance and frequency to select the most relevant ones and design the V-3 questionnaire, which was translated into 16 languages. This questionnaire was presented to 125 patients in an observational, international, multi-center, cross-sectional study, including 14 investigators from Spain, France, Germany, The Netherlands and Italy; the generic SF-36 questionnaire and a question on self-perceived general health status, as well as clinical and hormonal data were also collected. Results: 107 were pituitary-dependent and 18 adrenal- dependent CS; 83% were females, median age 45 yrs; 34% were currently hypercortisolemic and 38% adrenal insufficient. CushingQoL was feasible (94% of patients fully responded to the questionnaire in 4 minutes), 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 correlation coefficient >0.597). Patients with hypercortisolemia (56±22 vs 48±20, P=0.043) and increased UFC (56±19 vs 46±23, P=0.009) scored worse than those without.
Conclusion: Conclusion: CushingQoL is useful to evaluate HRQoL in patients with CS and correlates with clinical parameters.
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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