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In Their Own Words: Quotes from Cancer Patients About Fatigue
Elisabeth Piault, Pharm D, MA
Associate Project Director Mapi Values
Despite the well-documented prevalence of fatigue in patients diagnosed with cancer, cancerrelated fatigue (CRF) remains a widely under-reported and under-treated phenomenon.
If
advances in health care provision are to be successful in minimizing the suffering and distress
caused by CRF an understanding of how people communicate its impact to family, friends, and
healthcare professionals, and what meanings they ascribed to be, is essential. Although the
word “fatigue” is understood by the scientific community it is unclear whether patients will
spontaneously refer to their feeling of lack of energy, weakness, sleepiness, lack of motivation,
desire for rest, etc. as “being fatigued.”
The purpose of this research was to draw on qualitative research to explore how patients with
CRF describe it.
In addition it sought to retrieve patients’ quotes from this research and
identify the descriptors that patients use when reporting their experience of CRF (e.g.,
sensation, impact on health-related quality of life).
Four biomedical databases were searched (i.e., Medline®, the Cochrane Database of
Systematic Reviews: Cochrane reviews, CANCERLIT®, and the Cumulative Index to Nursing &
Allied Health Literature®) and only articles that contained direct patient quotes were retained.
Of the 23 articles1-23 identified, one-third were from the nursing literature (Oncology Nurs
Forum [n=3]; Eur J Oncology Nurs [n=2]; J Adv Nurs [n=1]). The final database contained 654
quotes that were retrieved from 23 articles totaling 19,432 words, with an average of 27
quotes retrieved per article (range, 487). Quotes were retrieved and imported into ATLAS.ti
(Version 5.0, 2nd Edition) which facilitates the organization and analyses of qualitative data.
The study team identified and presented patterns in the data at the ASCRPO Fatigue Meeting
held in October 14th 2007.
When referring to CRF in the reports of this research, patients mainly used the word
“tiredness” associated with adverbs of degree (very, extremely) or created compound words
such as “dead-tired” and “sick-tired.” Patients used words like “exhaustion” and colloquial
negative expressions reflecting noticeable loss of energy or inability to perform some tasks
routinely done before their cancer. Patients also tended to use metaphorical descriptions to
convey the meaning of their experience of CRF. Patients frequently used colloquialisms e.g.,
“Being punched,” “Having a deathly hang over.”
Imagery or metaphors were also used by
patients: “When I get up, my legs feel like spaghetti, •
[I feel] “out of gas. Like your battery just
ran dry.”
The most salient finding was that in most of the studies CRF was reported as being of greater
intensity than previously experienced tiredness, contributing to the general feeling that CRF
was ‘overwhelming’ as well as abnormal. Furthermore, patients emphasized that CRF differed
from their previous experiences of tiredness in its duration/persistence even after rest.
Although triggers could be identified by some patients (e.g., chemotherapy), others conveyed
the fact that CRF’s unpredictability added to the frustration/despair and cognitive distress
(e.g., inability to focus, inability to make decisions).
Patients also reported a lack of
motivation for engaging in activities with friends or family and a preference for staying by
themselves to rest.
Findings indicated that using the word ‘tiredness’ instead of ‘fatigue’ might limit the
appreciation of the phenomenon of CRF because patients refer to other terms to describe their
experience.
In addition the distinction between the sensation of fatigue (e.g., intensity,
duration) and the impact of fatigue on functioning is difficult to separate.
The major limitation of our research includes the fact that we relied on secondary analyses and
did not review the actual transcripts. Publication bias, which could lead the authors to report
quotes that are more dramatic or that fit a pre-existing framework, limit our ability to
interpret the data. Most importantly, only a few authors provided the questions that were part
of the interview guide. In this sample, the word ‘fatigue’ was used which prevented us from
determining whether patients would spontaneously refer to their condition as ‘fatigue’ without
prompting.
It also appears that the inclusion/exclusion criteria relied on patients’ self-
assessment of the severity of their fatigue (on European Organization for Research and
Treatment of Cancer [EORTC] questionnaire or Fatigue VAS). Correlations between fatigue and
symptoms such as depression or pain raise the question of whether fatigue should be regarded
as an individual symptom, as a syndrome, or as part of a symptom cluster. Limits in sample
size for qualitative research (average 14 patients) and lack of information regarding sample
characteristics prevented us from drawing any meaningful conclusions other than identifying
the need for collecting this information (i.e., pain and depression interrelation of CRF).
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