http://theoncologist.alphamedpress.org/content/14/9/936.

full

Patient-Related Barriers to Fatigue

Communication in Cancer Patients
Receiving Active Treatment
1. Shiow-Ching Shun,

2. Yeur-Hur Lai and

3. Fei-Hsiu Hsiao

+ Author Affiliations

1. Correspondence:
• Department of Nursing,Shiow-Ching
College ofShun, R.N., Ph.D.,National
Medicine, No. 1, Jen-Ai Road Sec.
Taiwan 1, Taipei 100,Taipei,
University, Taiwan. Taiwan
Telephone: 886-2-23123456, ext. 88439; Fax: 886-2-23219913; e-mail: scshun@ntu.edu.tw
2. Received March 16, 2009.
3. Accepted August 17, 2009.
4. First published online in THE ONCOLOGIST Express on September 8, 2009.
5. Disclosures: Shiow-Ching Shun: None; Yeur-Hur Lai: None; Fei-Hsiu Hsiao:None.

The content of this article has been reviewed by independent peer reviewers to ensure that it is
balanced, objective, and free from commercial bias. No financial relationships relevant to the content
of this article have been disclosed by the authors or independent peer reviewers.

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ABSTRACT
Objective. To explore barriers to reporting fatigue in cancer patients
receiving active treatment and the significant factors associated with those
barriers from fatigue characteristics (i.e., intensity, duration, and
interference with daily life), to demographic characteristics and
disease/treatment variables.
Methods. Patients with various types of cancer ( n = 288) were recruited from an outpatient

chemotherapy center, and from seven oncology and hematology units in a teaching hospital in northern

Taiwan. Data were collected using the Fatigue Management Barriers Questionnaire to explore barriers to

fatigue communication.

Results. Fear of distracting the doctor was rated as the highest barrier of reporting fatigue. The degree

of fatigue interference with daily life by patients was associated with the willingness to report fatigue.

Patients with gastrointestinal cancer experienced more barriers to reporting fatigue than those with
hematological cancer. Patients without religion perceived the highest level of barriers to fatigue

communication. Outpatients had higher levels of concern than inpatients.

Conclusions. Discussion with patients about their high level of perceived fatigue barriers before

implementing patient education is recommended. Assessing fatigue interference with daily life and

identifying factors associated with barriers to reporting fatigue (i.e., type of cancer, religion, and the

setting for receiving treatment) are suggested in order to provide better fatigue management in clinical

settings.

6. Cancer

7. Active treatment

8. Barriers

9. Fatigue

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INTRODUCTION
Fatigue is the most common problem encountered by cancer patients, occurring in >90% of
individuals with cancer, particularly in patients receiving anticancer treatment [1–4]. It profoundly
affects patients' quality of life, especially in aspects of their daily routine, social activities, and
cognitive tasks [5–7].
Because fatigue is a subjective experience, communication with health care providers is the most
important step in initiating professionals to provide optimal fatigue management [8]. Effective
symptom management and patient–provider communication cannot occur without the patient fully
understanding the representation of their illness or the symptom [9–11]. Reporting fatigue to health
care providers means that patients can assess their experience of fatigue by means of a cognitive
process [12] and are willing to communicate with health care providers after their appraisal of coping
based on the common sense model of illness representation [9, 11, 13]. Communicating with health
care providers is the help-seeking behavior that occurs after representation of fatigue [9, 10, 12]. The
characteristics of fatigue (i.e., intensity, duration, and its interference) are the critical components of
the representation of fatigue [9].
However, most cancer patients do not report their fatigue to health care professionals after self-
appraisal [9, 14, 15] because of misconceptions about cancer-related fatigue. For example, previous
studies indicate that patients who experienced fatigue (n = 576) do not report it to their doctors
because they feel it is inevitable (43%), unimportant (34%), or untreatable (27%) [16], and they
believe that fatigue is an expected outcome of their cancer treatment (79%), will not persist much
longer (61%), or is caused by their cancer (49%) [17]. The barriers to communicating with health care
providers result from the doctor's failure to offer treatment, patients' lack of awareness of effective
treatment for fatigue, patients' intention to treat fatigue without taking medications, and patients' not
wanting to distract their doctor from treating their disease [14]. In addition, patients who believe
fatigue has not been taken seriously may create a communication block [18].
To the best of our knowledge, only four studies [15–17, 19] have explored the concerns of
communicating fatigue management. However, the majority of these studies focused on the reasons
for patients' unwillingness to discuss fatigue or on concerns of communicating with health care
providers [14–16]. Among these limited studies, only one study further explored and identified
selected demographic or medical factors [19]. That study pointed out that higher levels of patient-
related barriers to communicating fatigue were associated with patients who had lower educational
levels and who were concerned with being good patients. Patients with colon cancer had more
negative belief barriers to reporting fatigue than those with lung cancer.
Fatigue interference with life has been shown to be a clinical outcome measure in influencing cancer
patients' quality of life [20, 21], and its characteristics (i.e., interference, duration, and intensity) are
important dimensions in illness representation [13]. Unfortunately, assessing fatigue interference has
been underused, compared with measuring fatigue intensity in the clinical screening process [22]. To
improve clinical implementation, it is essential to know if there is any relationship between the
concerns of reporting fatigue and those characteristics, including intensity, duration, and
interference.

In order to better understand patients' barriers to reporting fatigue, to further improve the quality of
fatigue management, and to identify patients who are likely reluctant to report fatigue, health care
professionals need to explore these barriers and their relationship with patients' fatigue
characteristics (fatigue intensity, duration, and interference) along with selected disease/treatment
and demographic factors. Therefore, the purposes of this study were to: (a) explore patient-related
barriers to fatigue communication in cancer patients receiving active treatment in Taiwan, (b)
examine the relationship between barriers to fatigue communication and the characteristics of
fatigue, and (c) identify the demographic and clinical characteristics associated with barriers to
fatigue communication.

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PATIENTS AND METHODS
Sample
A cross-sectional survey with convenience sampling was used in this study. Eligible subjects were: (a)
any type of cancer inpatients and outpatients receiving chemotherapy, radiotherapy, or concurrent
therapy; (b) aged ≥18 years; (c) without cognitive impairment and able to communicate verbally; and
(d) patients receiving cancer-related treatment for >2 weeks and experiencing fatigue during their
treatment period. Cancer patients receiving their first session of treatment were excluded because
they might have limited treatment-related fatigue experience. Approval from the institutional review
board and patient consent were obtained before data collection. A set of questionnaires was
administered through person-to-person interviews by two well-trained research assistants.

Measurement

The instruments for this study were the Fatigue Symptom Inventory (FSI), the Fatigue Management
Barriers Questionnaire (FMBQ), and a researcher-designed background information form.
The FSI, a 14-item self-report measure, was designed to assess the intensity (four items), daily
pattern (one item), and duration (two items) of fatigue and its impact on quality of life (seven items)
[23, 24]. Twelve items are rated on an 11-point Likert-type scale (0, not at all fatigued; 10, extremely
fatigued), one item gives the number of days of perceived fatigue in the past week, and one item
provides qualitative information about the daily pattern of fatigue. The higher the total fatigue score,
the more severe the level of fatigue. The FSI has demonstrated good reliability and validity [ 23, 24].
The Chinese version of the FSI has been rigorously examined concerning its psychometric properties
in cancer patients [25–27]. In this study, the Cronbach's α coefficient for the Chinese version of the
FSI was 0.90.
The FMBQ is a 28-item, self-report instrument with a five-point Likert-type scale (1, strongly disagree;
5, strongly agree) [14]. It consists of 10 subscales, including treatment futility, fear of disease
progression, concern of being a good patient, fear of distracting the doctor, lack of concern, fear of
stigma, general medication concerns, preference of nonmedication interventions, fear of jeopardizing
cancer treatment, and lack of communication. It has been tested on various cancer patients with
good reliability (Cronbach's α coefficient, 0.88) and validity [14]. The higher the score, the higher the
presence of perceived concerns. The Chinese version of the FMBQ was rigorously translated and
back-translated by the bilingual members in this study. The Cronbach's α coefficient for the Chinese
version of the FMBQ in this study was 0.81.

The background questionnaire included demographic data (e.g., age, gender, educational level,
marital status, employment status, and religious affiliation) and clinical characteristics (type of
cancer, length of time since diagnosis, type of treatment, treatment settings, and functional status).

Data Analysis
Descriptive statistics and inferential statistics, including Pearson's correlation, Student's t-test, and
one-way analysis of variance (ANOVA) were used. Based on the common sense model of illness
representation [9, 13], we hypothesized that there are significant associations between fatigue
characteristics and perceived fatigue barriers. Pearson's correlation was used to examine correlation
between the fatigue characteristics and domains of concern. Student's t-test and one-way ANOVA
were conducted to explore the association between the concerns about reporting fatigue for cancer
patients receiving active treatment and the demographic variables (i.e., age, gender, educational
level, employment status, marital status, and religious affiliation) and clinical and disease information
(i.e., functional status, cancer diagnosis, treatment settings, time since initial cancer diagnosis, status
of disease, and treatment modality).
According to the results of mean score calculations of perceived fatigue barriers in this study, at least
112 participants were needed based on a simple interactive statistical analysis for using the t-test
and one-way ANOVA, with 80% power for a two-tailed test with p < .05. Therefore, the sample of 288
participants in this study met the criteria for an adequate sample size.

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RESULTS
Patient Characteristics
Two hundred eighty-eight cancer patients participated in this study, including outpatients (n = 132)
and inpatients (n = 156). Their demographic characteristics and clinical information, including fatigue
characteristics, are summarized in Table 1. In this study, 58.7% of patients were male, with ages in
the range of 25–87 years (mean, 50.7; standard deviation [SD], 13.1). The majority were married
(80.2%) and had completed education at the senior high school level (32.3%). The majority (82.0%)
had good functional status (Karnofsky performance status score ≥80). Concerning the types of
cancer, 27.4% had gastrointestinal tract cancer (e.g., liver, gastric, pancreatic, and colon cancer),
70.8% were newly diagnosed with cancer, 46.2% had been diagnosed for <6 months, and 85.8% had
received chemotherapy treatment. As for the fatigue characteristics in the sample, the mean
intensity of fatigue was 3.45 (SD, 1.46), with a range of 0.5–9.25 and the level of interference with
daily life was 2.63 (SD, 1.72) with a range of 0–9.14. On average, there were 3.54 (SD, 1.47) days
fatigued in the past week.

View this table: Table 1.

Demographic and clinical characteristics of
• In this window
• In a new window the sample ( n = 288)

Barriers to Fatigue Communication

The rank of domains of barriers to fatigue communication in the FMBQ for the participants is shown
in Table 2. Fear of distracting the doctor (mean, 3.44; SD, 0.76) was the most common barrier,
followed by preference of nonmedication interventions (mean, 3.39; SD, 0.64) and general medication
concerns (mean, 3.33; SD, 0.62). The mean score for the FMBQ for all participants was 80.41 (SD,
9.47), which showed a moderate level of concerns based on a range of 28–140.

View this table: Table 2.

Rank of domains of total fatigue management
• In this window
• In a new window barriers ( n = 288)

Factors Associated with Barriers to Fatigue Communication

The demographic, clinical, and fatigue characteristics were individually analyzed using Pearson's
correlation, the t-test, and one-way ANOVA in order to identify the factors associated with barriers to
fatigue communication. The results are shown inTable 3. Religious affiliation (F = 4.357; p = .005),
type of cancer (F = 3.81; p= .05), and treatment setting (inpatient or outpatient) (t = .305; p = .002)
were the factors significantly associated with concerns about reporting fatigue. Post hoc tests
indicated that patients without any religious affiliation had more concerns than those who were Taoist
(p < .05). Those diagnosed with gastrointestinal tract cancer had statistically higher levels of concern
than patients with hematological cancer.

View this table: Table 3.

Correlation between perceived fatigue barriers
• In this window
• In a new window and demographic, clinical, and fatigue

characteristics of the sample ( n = 288)

The results of the correlations between characteristics of fatigue (i.e., intensity, duration, and fatigue
interference) and overall concerns in the FMBQ in the total sample show that the total barrier was
only negatively significantly associated with fatigue interference (r = −0.161; p < .0001).

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DISCUSSION
This large-scale survey was administered to explore the relationship between patient-related barriers
to fatigue communication and demographic, clinical, and fatigue characteristics, and to identify
patients with higher levels of barriers to fatigue communication. There were several important
findings, as discussed below.

Fear of distracting the doctor was the highest reported barrier to fatigue communication in this study,
whereas it was the fifth ranked barrier to reporting pain [28]. Although fatigue is the most common
symptom in cancer patients, it is not the symptom most discussed with health care providers by
patients in Taiwan. A previous study indicated that cancer patients believe that fatigue will be cared
for by doctors when considered to be an important symptom by doctors [19]; however, fatigue is
generally not taken seriously by health care providers [29], with limited dialogue regarding fatigue
being initiated in clinical settings [30]. Therefore, considering the circumstance of patients' fear of
distracting their doctor, health care providers need to initiate communication about fatigue in order to
improve their patients' quality of life.
Most importantly, our study indicates that interference with daily life caused by fatigue was
negatively related to barriers to fatigue communication, meaning that cancer patients tended to be
more willing to report their fatigue (i.e., lower level of barriers) when they experienced higher levels
of interference caused by fatigue. Compared with other characteristics (i.e., intensity and duration),
fatigue interference was shown to play a determining role in the reporting of fatigue in this study. A
previous study pointed out that interference with daily life caused by cancer-related symptoms plays
a vital role in assessing the severity of symptoms [31]. As for the fatigue screening process, fatigue
intensity is generally assessed as none (0), mild (1–3), moderate (4–6), or severe (7–10) based on a 0-
to 10-point scale in clinical settings [22]. Health care providers conduct general education programs
for all patients while offering specific interventions for those with fatigue intensity scores >3. Based
on clinical guidelines, fatigue interference has been overlooked during this process. However,
interference caused by fatigue directly affects a patient's quality of life and influences their behaviors
and coping strategy toward fatigue [9, 11, 32, 33]. The role of interference-based severity of
symptoms has become an important consideration in clinical care [20]. Therefore, we should pay
attention to not only assessing fatigue intensity but also to its level of interference in clinical settings.
The current study revealed that patients with different cancer diagnoses have different levels of
barriers, which is similar to previous study results [19]. However, there are inconsistent results
concerning which type of cancer patient experiences the highest level of barriers and what the
reasons are for the results. Our study documented that patients with gastrointestinal tract cancer
perceived higher levels of barriers to reporting fatigue than those with hematological cancer, whereas
Borneman et al. [19] reported that patients with colon cancer had more negative belief barriers than
those with lung cancer. In further identifying the reasons for the results, we found that there was a
statistically significant difference in the level of interference caused by fatigue among the different
types of cancer (F = 2.52; p = .41), and that the level of fatigue interference in patients with
hematological cancer was significantly higher than the level in those with gastrointestinal tract
cancer (p = .038). This result also supports the notion that interference caused by fatigue is an
important factor associated with the barriers to communicating fatigue to health care providers. In
clinical settings, health care providers need to further examine patients with communication
problems caused by specific cancer types and to develop individual fatigue programs tailored to
different types of cancer.
Outpatients had significantly higher levels of concern than inpatients based on the sample in this
study. In Taiwan, the health care system offers very limited time for patients to report their symptoms
in clinical settings. In order to not distract their doctor's focus on curing their illness, cancer patients
likely do not to want to complain about their fatigue to health care providers even though fatigue is a
common form of distress among cancer patients. Therefore, providing tailored, written educational
information for outpatients before a fatigue management program is recommended in the future.

Different from previous study results [19], a significant relationship between barriers to fatigue
communication and religion was found in this study. Patients without religion had the highest level of
barriers to fatigue communication, with levels significantly higher than those of patients following
Taoist beliefs. The cultural context, including religion, can affect coping behaviors during the process
of representation of symptoms or illness [34], and this might be the reason that religion might
influence help-seeking behavior such as communicating with health care providers after
representation of fatigue. This result provides important information for clinical practice in that it
indicates that health care providers should understand the patient's religion and pay more attention
to those patients without any religion for better fatigue management.

Some limitations exist in the present study. First, findings from this study can only be generalized to
cancer patients receiving only chemotherapy or to those receiving concurrent chemotherapy and
radiotherapy treatments. Second, barriers to fatigue communication might change over time because
of the symptom distress caused by active treatment. A longitudinal study design is suggested for
further study to explore the dynamic phenomena of cancer patients' concerns. Third, the FMBQ
reports levels of perceived barriers and not actual reporting behavior (i.e., the rate of reporting
fatigue to health care providers). Therefore, the rate of reporting behavior should be addressed in the
future. Last, patients were recruited from one hospital, and the influence of system-related barriers on
patient-related barriers cannot be examined. Recruiting participants from multiple centers is
recommended for further studies.

In conclusion, this research demonstrates that: (a) reassurance that initial fatigue communication will
not distract the doctor from curing illness might be helpful to decrease the barriers to fatigue
communication; (b) compared with other fatigue characteristics, the level of interference caused by
fatigue has a predominant role in determining levels of fatigue reporting in cancer patients; and (b)
important information is offered to help identify populations who are unwilling to report fatigue,
including outpatients, those diagnosed with gastrointestinal tract cancer, and those without religion.
These findings could help health care providers to better understand the populations with a high risk
of barriers to communicating fatigue and to realize the need to assess the level of fatigue
interference in clinical settings in order to improve fatigue management. Further intervention studies
should be tailored to patients with various cancer diagnoses, to patients with different levels of
fatigue interference, and to outpatients.

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AUTHOR CONTRIBUTIONS
Conception/Design: Shiow-Ching Shun, Yeur-Hur Lai, Fei-Hsiu Hsiao
Administrative support: Yeur-Hur Lai
 Provision of study materials: Shiow-Ching Shun
Collection/assembly of data: Shiow-Ching Shun
Data analysis: Shiow-Ching Shun, Yeur-Hur Lai, Fei-Hsiu Hsiao
Manuscript writing: Shiow-Ching Shun, Yeur-Hur Lai, Fei-Hsiu Hsiao
Final approval of manuscript: Shiow-Ching Shun, Yeur-Hur Lai, Fei-Hsiu Hsiao

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ACKNOWLEDGMENTS
This study was funded by the National Taiwan University and National Science Council in Taiwan
(NSC95-2314-B-002-335). The authors gratefully acknowledge professional English editing by George
Plautz, an associate director of the English Language Institute at the University of Utah.

10.©AlphaMed Press 1083-7159/2009/$30.00/0

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