Patients with Cushing's disease need illness support apart from medical interventions

Objective: To obtain structured information about the need of patients with Cushing's disease (CD) for support in dealing with their illness in order to provide leverage points for improving care.

Design: 54 patients with ACTH-dependent CD who had received pituitary surgery in a large tertiary neurosurgical referral center in the south of Germany completed a self-developed questionnaire, 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. self-help groups, workshops and other).

Methods: Descriptive data were analyzed using SPSS. Answers in free text options were categorized and counted.

Results: Support was mostly needed in the first weeks (42.6%) and in the first year (44.4%) after surgery. Patients reported to suffer primarily from reduced physical performance (43.7%), Cushing related symptoms (38.0%, e.g. overweight, pain, insulin resistance) and reduced quality of life, including depression (24.7%). The care of the physician (34.2%) and the support of family/friends (28.5%) were stated as the most helpful factors in coping with CD. Patients wish to be supported within the scope of lectures, brochures and self-help groups. When asking about a specific training, most patients opted for a computer-based training. The most requested topics for such a training were exchange with other patients (56.9%), physical exercise (47.1), nutrition (45.1), and relaxation/stress management (41.2%). Also, 55.8% of patients responded to be willing to pay for the training.

Conclusion: Patients with CD need long-term support in dealing with their illness apart from medical therapies. We therefore recommend implementing specific training programs to improve quality of life of the affected patients.