Article
Patients with Cushing's disease need illness support apart from good neurosurgery
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Published: | June 9, 2017 |
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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.