Knowledge, perceptions, and management of cancer-related fatigue: the patients' perspective

PURPOSE: This study aimed to assess cancer patients’ knowledge and perceptions regarding fatigue and to provide up-to-date information on the current fatigue management from the patients’ perspective. METHODS: The FiX study recruited 2508 cancer patients approximately 2 years after diagnosis via a cancer registry in Germany. Participants completed a questionnaire on their knowledge and perceptions of fatigue and the management received. RESULTS: More than half of respondents (58%), especially among the elderly patients, did not feel well informed about fatigue. Overall, 41% reported having never been asked about being exhausted by their treating physician. Even fewer patients stated that general practitioners or nurses have asked if they felt exhausted. Only 13% of patients who had experienced severe fatigue had received a fatigue assessment by means of a rating scale or questionnaire—although this is recommended by existing guidelines for fatigue screening. Health care professionals seemed less likely to address fatigue with elderly as well as female patients. The most commonly reported measure against fatigue was exercise or regular physical activity (68%). However, this was mostly done on patients’ own initiative. Psychological support was rarely used (13%) and only in approximately half of the cases upon the advice of a physician. Yoga, another promising intervention against fatigue, was performed by only 9% of patients. CONCLUSIONS: Our study indicates deficits in terms of knowledge, education, screening, counseling, and treatment for fatigue and highlights starting points for targeted improvements in fatigue management based on patients’ needs. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s00520-020-05686-5) contains supplementary material, which is available to authorized users.