gms | German Medical Science

68th Annual Meeting of the German Society of Neurosurgery (DGNC)
7th Joint Meeting with the British Neurosurgical Society (SBNS)

German Society of Neurosurgery (DGNC)

14 - 17 May 2017, Magdeburg

Patients with Cushing's disease need illness support apart from good neurosurgery

Meeting Abstract

  • Agnieszka Grzywotz - Department of Neurosurgery, University of Duisburg-Essen, Essen, Deutschland
  • Bernadette Kleist - Department of Neurosurgery, University of Duisburg-Essen, Essen, Deutschland
  • Sonja Siegel - Department of Neurosurgery, University of Duisburg-Essen, Essen, Deutschland
  • Christa Gammel - Department of Neurosurgery, Friedrich-Alexander University Erlangen Nuremberg, Erlangen, Deutschland
  • Michael Buchfelder - Department of Neurosurgery, Friedrich-Alexander University Erlangen Nuremberg, Erlangen, Deutschland
  • Ilonka Kreitschmann-Andermahr - University Hospital Essen, Department of Neurosurgery, Essen, Deutschland
  • Oliver M. Müller - Universitätsklinikum Essen der Universität Duisburg-Essen, Klinik und Poliklinik für Neurochirurgie, Essen, Deutschland

Deutsche Gesellschaft für Neurochirurgie. Society of British Neurological Surgeons. 68. Jahrestagung der Deutschen Gesellschaft für Neurochirurgie (DGNC), 7. Joint Meeting mit der Society of British Neurological Surgeons (SBNS). Magdeburg, 14.-17.05.2017. Düsseldorf: German Medical Science GMS Publishing House; 2017. DocMO.17.07

doi: 10.3205/17dgnc103, urn:nbn:de:0183-17dgnc1030

Published: June 9, 2017

© 2017 Grzywotz et al.
This is an Open Access article distributed under the terms of the Creative Commons Attribution 4.0 License. See license information at http://creativecommons.org/licenses/by/4.0/.


Outline

Text

Objective: Patients with Cushing’s disease (CD) often suffer of a long-term reduced quality of life, despite successful neurosurgery and other medical therapies. In order to obtain leverage points for improving patient care, it was the aim of the present study to obtain structured information about the needs of CD patients to successfully cope with their illness by means of a patient-reported outcome (PRO) survey.

Methods: Patients with ACTH-dependent CD, who had received pituitary surgery at two neurosurgical tertiary referral centers, completed a self-developed PRO survey, asking about the timeframe support was needed the most, current disease burden, coping strategies, as well as patients’ interest in different kinds of support (e.g. support-groups, workshops and other). Descriptive data were analyzed using SPSS. Answers in free text options were categorized and counted.

Results: 71 patients answered the questionnaire. Support was mostly needed before therapy (45.1%) and within the first year after the start of therapy (42.3%). Patients suffer primarily from common CD-related symptoms (52.3%, e.g. overweight, moon face, skin issues) and reduced performance (36.9%, e.g. muscle weakness, fatigue). The care of the physician (44.4%) and the support of family/friends (31.7%) were stated as the most helpful factors in coping with CD. Patients also wished to be supported within the scope of brochures, lectures, online-forums and support-groups. When asked about a specific program, most patients preferred internet-based programs (75.4%). The most frequently requested topics were communicating with other people (52.9%), physical exercise (45.6), nutrition (45.6), and relaxation (36.8%)/stress management (33.8%). Also, 52.5% of patients answered to be willing to pay for a support program.

Conclusion: The survey clearly shows that patients with CD need long-term support in dealing with their illness apart from good neurosurgery and other medical interventionss. This need should be recognized by caregivers and patients should be directed in the direction of self-help groups and other supplementary support sources. Furthermore, the development of educational ressources for patients with CD and other pituitary disorders is suggested.