Non-conventional treatments sought by patients after surgery for intramedullary spinal cord tumors.

Objective: Despite modern microsurgical techniques and interdisciplinary treatment options, intramedullary spinal cord tumors often lead to profound neurological deficits. Some patients may search for non-scientific or unconventional therapeutic options to treat the symptoms induced by the tumor itself or arising from treatment. The extent of non-scientific therapy use, the rationale behind it, and costs of these forms of therapy are unknown.

Methods: A questionnaire consisting of 20 questions was sent to 60 patients of a single neurosurgical center who had undergone surgery for an intramedullary spinal cord tumor. A retrospective study was carried out based on this data. Histological findings ranged from ependymoma (52.9%), hemangioblastoma (17.6%), cavernoma (14.7%), astrocytoma (8.8%), oligodendroglioma (2.9%) to ganglioglioma (2.9%). Non-scientific therapy was defined as a method not used in routine clinical practice for the treatment of symptoms induced by intramedullary spinal cord tumors.

Results: A total of 38 questionnaires was returned. About 55.3% of the patients claimed to use non-scientific therapies. No significant difference between histological types and the percentage of alternative therapy use was detected. There was a gender difference. One third (non user group) to one fourth (user group) did not feel adequately informed about their disease. The monthly costs for non-scientific therapies ranged from 50 to 500 Euros. The main motive for the use of non-scientific therapies was the wish to try everything possible.

Conclusion: In the daily clinical routine, patients' use of non-scientific therapies may be largely overlooked and underestimated. Neurooncologists should be aware of this phenomenon and encourage an open but critical dialogue with their patients.