Our clock is truly ticking—a qualitative study on patients’ experiences of tumor treating fields

Abstract

Abstract Background TTFields is recommended internationally for the treatment of glioblastoma. In Sweden, TTFields requires a possibly challenging collaboration between the patient, next-of-kin, healthcare, and the private company providing the device, both from an ethical and practical perspective. Little is known about glioblastoma patients’ own experiences of TTFields treatment. Methods Semi-structured individual interviews were conducted with 31 patients with glioblastoma who had been offered TTFields by the healthcare. These were analyzed by qualitative content analysis. Results Participants described there being multiple actors around them as TTFields users; (1) device prescription from physicians, sometimes providing insufficient information, (2) practical assistance from next-of-kin, necessary to access treatment, (3) home visits from the private company staff for device control, where close bonds between patients and TTFields staff occurred. TTFields treatment created hope and a feeling of control in an otherwise hopeless situation, sometimes evoking worries at the time of planned treatment stop. Some refrained from TTFields or discontinued early due to fear or experience of negative effects on quality of life. Others described finding practical and mental solutions for coping with the treatment in everyday life. Conclusions Our study identified a need for better support and information from healthcare providers for TTFields. A solution is necessary for assistance with TTFields for those without support from next-of-kin. The study raises the question of possible advantages of healthcare handling the technical support of the device instead of a private company, thereby avoiding a true or perceived influence on the patient’s decision to continue or stop treatment.