BACKGROUND

Fatigue in cancer, often described as cancer-related fatigue, is a complex syndrome with diverse causes, covering physical, mental, and emotional components. Patients experiencing it define it as a chronic or abnormal whole-body experience of tiredness, combined with decreased capacity for physical and mental work. This condition is not related (or not proportionally related) to activity and is often less likely to be relieved by rest (Patarca-Montero, 2004). The European Association for Palliative Care defined cancer-related fatigue and underlined the subjective aspect of feeling tired, weak, or lacking energy (Radbruch et al., 2008).

Among cancer patients, fatigue is one of the most troublesome and most frequently reported complaints. The frequency of this ailment is estimated differently depending on the design of the research, specifically the type of the study group, the questionnaire or scale used in the study to measure fatigue, and (connected with it) the theory and definition of fatigue (Donovan et al., 2013).

A more recently published meta-analysis of articles from 1993 to 2020 revealed that the overall severity of fatigue in the group of patients was 49%. Among patients with advanced cancer, the highest intensity of fatigue observed was 60.6%. The authors drew attention to the interesting issue of a decreasing intensity of fatigue in studies, from an average of 64% in publications from 1996 to 2000 to 43% in more recent studies – those after 2016 (Al Maqbali et al., 2021).

A higher intensity of fatigue is observed in patients during treatment, for example during chemotherapy. In a slightly older systematic review of publications on fatigue in patients receiving chemotherapy, it was found that up to 68% of patients experience such fatigue, depending on the studies (Iop et al., 2004). In the already cited recent meta-analysis, fatigue during treatment was reported by 51% to 62% of patients (Al Maqbali et al., 2021).

Furthermore, it seems that fatigue can be a problem even after treatment has ended. The research by Cella et al. (2001) revealed that 33% of patients, even more than 5 years after the end of treatment, experienced at least 2-week episodes of fatigue, which significantly affected quality of life. The influence of fatigue on quality of life can be seen in many other studies. It can be concluded that fatigue is associated with a reduced quality of life for cancer patients (Visser & Smets, 1998) even independently of the effects of age and prior treatment history (Gupta et al., 2007). If the patient cannot find a way to cope with fatigue, it becomes increasingly associated with a wide range of negative effects that stimulate the sensation of losing control of parts of one’s life, with the final result of a “vicious circle” and loneliness, isolation, and further reduction in activity (Flechtner & Bottomley, 2003).

There is also evidence to suggest that fatigue may have a greater impact on daily life than pain in cancer patients while undergoing chemotherapy (Williams et al., 2016). Such data may be surprising, but it might be worth investigating them closely, due to the high awareness of the problem of pain in cancer. In practice, patient care for pain seems to be one of the most important tasks for medical staff. Fatigue is sometimes pushed into the background, disregarded, or considered an unimportant ailment. The same research revealed that 29% of staff noted the impact of fatigue on patients, and 25% of oncology nurses recognized the strength of this phenomenon in the life of their patients (Williams et al., 2016).

Our study pursued several research goals associated with cancer-related fatigue. One of them was the assessment of the prevalence of fatigue in a group of patients undergoing chemotherapy. Another goal was to explore both the understanding of the reason for fatigue and awareness of the ways of coping with it from a patient’s subjective perspective. The main purpose of the study was to compare this subjective perspective of patients with the estimates of medical staff about patient fatigue.

PARTICIPANTS AND PROCEDURE

RESULTS

In this study, patients were asked if they experienced fatigue as a problem (possible answers were “yes” or “no”). Medical staff members were asked to make similar estimations of their patients’ fatigue as a complaint (“yes” or “no” answers could also be given). Four categories appeared in the list of all answers. Patients and staff in most cases agreed on the state of fatigue of the patients (in 63% of cases overall). However, in 37% of the responses, the staff misconstrued the patients’ fatigue or lack of it. This means that in 37% of cases the personnel misdiagnosed the patient’s fatigue (Table 3).

Even more discrepant were the assessments of the intensity of patient fatigue made by patients and staff using the 1-10 NRS. In these cases, the Fleiss kappa coefficient of agreement was only 0.13. The mean and standard deviation of fatigue estimated by the patients were M = 4.50, SD = 3.10. For personnel assessing their patient’s fatigue, the mean was M = 3.60, with SD = 2.79.

Quite significant differences were also observed between the estimations of the causes of the patient’s fatigue made by the staff and the patient’s own estimations. Patients identified more causes of fatigue, including stress not accounted for by medical staff. The vast majority of the medical personnel viewed the causes of their patient’s fatigue as the “helpful”, but also “burdensome” treatment of cancer. Patients’ answers were quite evenly distributed, with most of them claiming “general weakness” as the main cause of fatigue. Detailed data, including patient and staff responses, are presented in Figure 1.

Figure 1

The main cause of patients’ fatigue assessed by patients themselves and medical staff

Subsequent questions were posed only to patients and concerned whether they knew of any ways to deal with fatigue and with whom they most often discussed their fatigue. The answers to the first question are presented in Figure 2, which show a fairly even distribution of answers, with a slight increase in responses from people who did not know of any ways to cope with fatigue.

Figure 2

Answers to the question to patients whether they know of any ways to cope with fatigue

In turn, Figure 3 shows that patients most often discussed their fatigue with family and friends, while only 1 person indicated that the partner in the conversation on this topic was someone who represented the medical staff.

Figure 3

Answers to the question asked by patients whom they talk to about their fatigue

The study also used two inventories to measure fatigue: the Chalder Fatigue Questionnaire and the EORTC QLQ-C30 fatigue subscale combined with NRS fatigue estimations.

The Chalder Fatigue Questionnaire (CFQ), adapted to Polish conditions (PL), was used for the first time in a group of oncological patients. The questionnaire turned out to be a psychometrically valuable tool; the external validity measured by the correlation between the inventories and numerical rating scales was satisfactory:

In addition, both questionnaires and sets of NRSs well differentiated patients both reporting and not reporting fatigue. There were statistically significant differences between these two groups in terms of fatigue measured by the CFQ-PL (a stronger intensity of fatigue was visible in patients reporting fatigue) and the subscale of fatigue from the EORTC QLQ-C30 and all employed numerical rating scales. Detailed calculations made using the Mann-Whitney U test are presented in Table 4.

While simple patient declarations in the form of answers to the question whether the patient was tired (“yes” or “no”) corresponded to the results of reliable and accurate questionnaires and simple numerical scales, the staff’s estimations in the form of answers to the question whether the patient was tired (“yes” or “no”) coincided with the results of the questionnaires only in one case, on only one of the NRSs for fatigue (current patient’s fatigue).

Only in this case, the group of staff who answered that they noticed the patient’s fatigue and the group of those who did not report fatigue in the patient’s case differed in the intensity of fatigue measured by the patients themselves using the NRS. In all other cases, there was no difference between the two groups of healthcare workers in the severity of patients’ fatigue as measured by the CFQ-PL and the other scales and questionnaire (average fatigue, strongest fatigue, influence of fatigue on life in general, and influence of fatigue on the patient’s quality of life) (Table 5).

DISCUSSION

The results presented above reveal a certain discrepancy regarding estimations of fatigue in a group of patients and medical staff. Although 63% of the assessments were consistent, the 37% that lacked consistency in the basic assessment of whether the patient is fatigued or not is worrying. Even greater differences were revealed when it came to assessments of the severity of fatigue, where we no longer observed any agreement. The simple question of whether one is tired or not corresponds perfectly with all the questionnaires used to measure fatigue (CFQ-PL, EORTC QLQ-C30 fatigue subscale, NRS current, average, and strongest fatigue) in the group of patients. Patients reporting fatigue differed from those who did not report fatigue in the intensity of fatigue in these questionnaires. Differences between fatigued and non-fatigued patients could also be seen in the case of the NRS concerning the assessment of the impact of fatigue on everyday life and its quality. The group of patients who were fatigued reported a greater impact of this condition on their lives compared to those who were not fatigued.

The question of a simple estimation of whether a patient is fatigued or not, made by medical staff, is completely different in the context of a patient’s subjective, more elaborate answers. Such estimates corresponded to only one numerical scale in which the patient assessed current fatigue. The assessment of whether the patient was fatigued or not was not related in any way to the results of reliable and valid questionnaires to measure the severity of fatigue and other NRSs (average and strongest fatigue and the impact of fatigue on the patient’s life and quality of life) completed by the patients. Such a difference of perspective cited in the literature is unfortunately nothing new. From time to time, studies are published showing discrepancies in assessment, or a misunderstanding of the fatigue experienced by patients on the part of medical staff (Harrington et al., 2023; Piredda et al., 2007). In one of these studies, oncologists were shown to be extremely sensitive to patients’ needs (even more so than those reported by the patients) and showed a fairly thorough insight into the patients’ symptoms, all except for fatigue (Newell et al., 1998). One can also find more optimistic data in the scientific literature indicating that medical staff members recognize the problem of fatigue among patients (even overestimating its impact on everyday life), but such publications are in the minority (Stone et al., 2003).

The authors of a child fatigue scale – namely three related scales for measuring child fatigue: the oncological patient, filled in by the child (the Childhood Fatigue Scale), their parent (the Parent Fatigue Scale) and the oncologist (the Staff Fatigue Scale) – are also convinced of the need to consider different perspectives. Even the very way of defining fatigue may differ among these groups. Children perceive fatigue as overwhelming exhaustion and difficulty moving or opening their eyes. Parents perceive their child’s state of fatigue as a depletion of energy that occurs under the influence of many factors, including the disease itself, nutrition, emotions, behavior, family activities and treatment. Oncologists, on the other hand, define fatigue as a symptom accompanied by an emotional state, combined with withdrawal, mood swings, increased irritability, and depressed mood. Similarly, the perceived causes of fatigue may differ among these three groups (Hockenberry et al., 2003). Our research also revealed a difference in the perception of the causes of fatigue. Medical staff identified chemotherapy as responsible for fatigue to a much greater extent than patients, who gave various reasons for fatigue (including treatment, but it was not the predominant answer). Patients identified more causes of fatigue, including stress, which was not identified by medical staff. From various data collected in a relevant meta-analysis, information can be found that the overall correlation between psychological distress and cancer-related fatigue is stronger than between any other symptoms (Oh & Seo, 2011).

In our study, in the group of patients who gave an affirmative answer to the question of feeling fatigued, as many as 51.4% did not know of any ways to cope with fatigue. Also the majority of the study group did not mention the problem of fatigue to the medical staff. Fatigue is a topic of conversation among friends and family. This is consistent with the results of studies by other authors; for instance, one study showed that 66% of patients did not raise the issue of fatigue in conversation with doctors. Patients identify various reasons for this phenomenon, but one of the main ones is patients’ lack of knowledge about the treatment options for fatigue. Such an answer in the cited study was given by as many as 43% of respondents (Passik et al., 2002). In another, slightly older study, which included three perspectives (those of patients, their caregivers and doctors) in the context of fatigue, as many as 80% of oncologists were convinced that fatigue is an often-overlooked and untreated topic, and the majority of patients (74%) believed that it is something that they just have to endure (Vogelzang et al., 1997). Research points to even more potential roadblocks to bringing the subject of fatigue to the conversation with medical staff for example, starting with the type of cancer, the patient’s religiosity, the impact of fatigue on everyday life or even the fear that talking about fatigue will distract the doctor’s attention (Shun et al., 2009). Some of the roadblocks were identified by the authors of a very useful scale: the Fatigue Management Barriers Questionnaire – adapted for oncological patients (Passik et al., 2002).

CONCLUSIONS

Despite existing recommendations on the need to screen (Fisher et al., 2022) and educate patients in the context of cancer-related fatigue, provided for example by the European Society for Medical Oncology (Fabi et al., 2020), or the US National Comprehensive Cancer Network (Berger et al., 2015), and a huge amount of material on the subject available to the patient and medical staff on the Internet, the issue of fatigue still seems to require attention. In recently published studies, more than half of the surveyed patients (especially the elderly) noted a lack of knowledge and information about fatigue. Across the whole group, 41% of study participants reported that they had not received any questions about their fatigue from healthcare professionals. Of the group that experienced extreme fatigue, only 13% of patients were helped by the medical staff in the form of screening in the context of the intensity of fatigue (Schmidt et al., 2021). With a significant discrepancy in the perception of fatigue between patients and staff, there is a risk that the problem of cancer-related fatigue will go unnoticed. Subjective assessments regarding the state, motivation, and emotions of another person are part of social life which humanistic psychologists and humanistic-existential psychotherapists particularly emphasize. Sometimes we forget too easily how many of our assessment results are derived from our perceptions and do not necessarily correspond to the patient’s condition and feelings. We hope that this study will become part of the important discussion on cancer-related fatigue under the slogan: “Ask the patient. Don’t assume”.