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

Abstract

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.

Cancer-related fatigue: benefits of information booklets to improve patients’ knowledge and empowerment

“…Only 19% of participants were adequately informed about fatigue by the treating physician and even fewer by nurses or general practitioners. This finding is in line with the large FiX survey (n = 2508), where 41% of cancer survivors reported having never been asked about being exhausted by their treating physician [9]. Lack of education and counseling on fatigue was also observed in other studies outside Germany [19,20].…”

“…Our results revealed a lack of knowledge about these potential fatigue treatment options in about two-thirds of patients, especially regarding strength training and psycho-social interventions, but to a lesser extent also regarding aerobic exercise and yoga. These results underpin previous findings that treatment options were too rarely taken up by patients with fatigue [9].…”

“…Even patients suffering from fatigue symptoms often do not know that their burden has a name and is a common phenomenon. In a recent large survey in 2508 cancer survivors about 2 years after diagnosis [9], a similarly high proportion (58%) reported feeling not well informed about fatigue as in the CARPE DIEM study (56%). This deficiency of information is a fundamental problem, which can hinder patients' access to preventive measures and prevent them from seeking help and getting treatment for their problems.…”

“…In addition, more than one-fifth of the participants believed that there is no way to alleviate fatigue. A remarkable number of patients further agreed with the statements that fatigue is a side effect that has to be accepted (40%) and that fatigue disappears by itself after the end of cancer treatment (29%) [9]. Thus, lack of knowledge seems to be associated with false beliefs, detrimental attitudes, anxiety, and distress.…”

“…Cancer-related fatigue is a common and very burdensome problem, defined as a distressing, persistent, subjective sense of physical, emotional, and/or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning [1]. Although there is evidence for effective treatment options such as aerobic and resistance exercise, yoga, or psychosocial interventions [2][3][4][5][6][7][8], fatigue often remains unnoticed and untreated [9]. Clinical practice guidelines for the management of fatigue were published by the US National Comprehensive Cancer Network (NCCN) [2], the Canadian Association of Psychosocial Oncology (CAPO) [10], and the European Society for Medical Oncology (ESMO) [3].…”