Support Needs of Patients with Cushing’s Disease and Cushing’s Syndrome in Germany and the U.S.: Results of a Survey Conducted Among Patients of 2 German Neurosurgical Centers and the U.S. Based Cushing’s Research and Support Foundation

Presentation Number: SAT 409
Date of Presentation: April 1st, 2017

Bernadette Kleist1, Sonja Siegel1, Christa Gammel2, Karen Campbell3, Victoria Kuhna4, Agnieszka Grzywotz1, Ulrich Sure1, Oliver Müller1, Michael Buchfelder2 and IIonka Kreitschmann-Andermahr*1
1University of Duisburg-Essen, Essen, Germany, 2University Hospital Erlangen, Erlangen, Germany, 3Cushing's Support and Research Foundation, Plymouth, MA, 4Ev. Hospital Oldenburg, Oldenburg, Germany

Abstract

Introduction: Long term sequelae of hypercortisolism caused by Cushing´s disease (CD) or Cushing’s syndrome (CS) lead to an overall decreased quality of life (QoL) in the long-term, oftentimes despite biochemical control of the underlying disease. For patients with other chronic diseases (e.g. diabetes, multiple sclerosis) special educational and support programs, empowering patients to cope with the long-term effects of the illness, have already been developed, but not for CD/CS. Therefore, it was the aim of the present survey to gain information about disease-specific support needs in patients with CD and CS in Germany and the U.S. and to identify approaches for patient-centered support and psychosocial care.

Methods: Patients with CD treated in 2 neurosurgical tertiary referral centers in Germany and patients with CD/CS who are members of the U.S. based Cushing’s Support and Research Foundation (CRSF) completed a self-developed survey inquiring about disease burden, coping strategies and timepoints when support was needed the most. Additionally, the degree of interest in different offers, e.g. internet-based programs and seminars, was assessed. Data were analyzed using SPSS. Answers provided in free-text fields were clustered and counted.

Results: 84 U.S. and 71 German patients answered the questionnaire. There was no difference between groups with regard to sex and age (p>0.05). Patients in both countries indicated to suffer primarily from common Cushing-related symptoms (e.g. weight gain, buffalo hump, skin problems), reduced performance and psychological problems (e.g. depression, anxiety). 48.8% of patients from the U.S. and 44.4% of the German patients stated that good medical care and skilled doctors helped them the most in coping with the illness. Support was needed to a greater extent before therapy by the U.S patients (63.1%) than by the German patients (45.1%) with p=0.035. The U.S. patients were significantly more interested in support groups (51.2% vs. 33.8%, p=0.035) and in courses on illness coping than the German patients (48.8% vs. 26.8%, p=0.008), who stated to prefer brochures (45.1% vs 20.2%, p=0.001). 89.3% of U.S. patients would attend internet-based programs compared to 75.4% of German patients (p=0.040). There were no differences between groups for the duration of and the willingness to pay for such a program, but U.S. patients would be willing to travel longer distances to attend a support meeting (p=0.027).

Conclusion: Patients in both countries need skilled physicians and long-term medical care in dealing with the effects of CD/CS, whereas the interest in specific topics addressed in support programs differs between patients of both countries. The latter implies that not only disease-specific but also culture-specific training programs would need to be considered to satisfy the needs of patients in different countries.

 

Nothing to Disclose: BK, SS, CG, KC, VK, AG, US, OM, MB, IK