Presence, communication and treatment of fatigue and pain

complaints in incurable cancer patients

Susan Collins a,1, Elsbeth de Vogel-Voogt a,2,Adriaan Visser b, Agnes van der Heide c,*

a Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlandsb Helen Dowling Institute, Center for Psycho-oncology, Utrecht, The Netherlands

c Department of Public Health, Erasmus MC, University Medical Center Rotterdam, P.O. Box 2040, 3000 CA Rotterdam, The Netherlands

Received 3 April 2007; received in revised form 8 February 2008; accepted 16 February 2008

Abstract

Objective: This study describes the experiences of fatigue and pain in incurable cancer patients and the treatment they receive.

Methods: Patients were recruited via medical specialists from hospitals in the South and Southwest of the Netherlands. Hundred and twenty-five

incurable cancer patients filled out a written questionnaire and were also interviewed at home.

Results: Ninety percent reported to suffer from fatigue and 48% had pain. Forty-five percent had discussed fatigue with a healthcare professional

and 55% had discussed pain. Fifteen percent reported to receive medical treatment for their fatigue and 29% received pain treatment. Treatment for

fatigue and pain treatment had been recently adjusted in 4% of the patients with fatigue complaints and 21% of the patients with pain complaints.

Conclusion: Although fatigue is a more common problem than pain in patients with incurable cancer, less attention in the care is paid to fatigue

and its treatment than to pain.

Practice implications: Fatigue deserves more attention in the care policy for incurable cancer patients and more research should be focused on

interventions to address fatigue in this group of cancer patients.

# 2008 Elsevier Ireland Ltd. All rights reserved.

Keywords: Fatigue; Pain; Symptom management; Incurable cancer

www.elsevier.com/locate/pateducou

Patient Education and Counseling 72 (2008) 102–108

1. Introduction

Fatigue and pain are the most common symptoms among

cancer patients in the last stage of their life [1]. These

symptoms impair patients’ daily functioning and their quality

of life [2–5]. When the burden of these symptoms could be

relieved, incurable cancer patients may be much more capable

of performing daily activities that are important in the end stage

of their life, which in turn might raise their quality of life

[3,6,7].

Pain has been a focus in oncology research for many years.

Significant progress has been made in its assessment, but less in

* Corresponding author. Tel.: +31 10 7043719; fax: +31 10 4638474.

E-mail address: a.vanderheide@erasmusmc.nl (A. van der Heide).1 Currently working at the Institute for Extramural Research (EMGO) at the

Free University, Amsterdam, The Netherlands.2 Currently working at the Department General Practice of University of

Medical Center Rotterdam.

0738-3991/$ – see front matter # 2008 Elsevier Ireland Ltd. All rights reserved.

doi:10.1016/j.pec.2008.02.011

its management [8–10]. Pain teams, help desks and guidelines

have been introduced in palliative cancer care, which also

contributed to a better management of pain [11–14]. Research

on cancer-related fatigue lags behind the attention that has

been given to pain, although fatigue is like pain a major

problem among palliative cancer patients [1,15]. It has been

shown that patients’ daily life is even more negatively

influenced by fatigue than by pain [16,17]. Identifying the

underlying physiological mechanisms of cancer-related

fatigue was found to be very difficult because multiple causes

coexist and may have additive effects [10,18,19]. Since its

causes are so complex, cancer-related fatigue is difficult to

treat [20]. Possible interventions include physical exercise,

rest, psychological interventions, pharmacological treatments,

complementary approaches (e.g. massage) and informing

patients about causes and treatments options [21]. Until now

empirical evidence of effectiveness has only been found for

exercise, psychological interventions and the use of erythro-

poietic agents if anemia is present [22,23].

S. Collins et al. / Patient Education and Counseling 72 (2008) 102–108 103

In the Netherlands medical care for patients who are in the

last phase of life has received much attention during the past

decade [24]. The organization of health care for terminally ill

patients and the research in that field has greatly expanded

during a 5-year period from 1998 to 2003 by the development of

university-based centers for palliative care. In a longitudinal

survey the need for, the use, and the evaluation of the care for

incurable cancer patients was studied [24].

In this article we describe a part of this study, stressing the

results concerning patients’ fatigue and pain. In this study we

are aiming at describing similarities and differences in presence

and the management of these two most common symptoms in

advanced cancer patients. We expected that, although fatigue is

even more common than pain, fatigue is less actively managed,

due to the complexity of its nature and origins. The research

questions we focus on are as follows:

(a) W

Tabl

Inclu

Type

Brea

Colo

Ova

Lun

Pros

hat is the level of the experiences of fatigue and pain?

(b) W

hich factors are influencing the level of pain and fatigue

symptoms, e.g. socio-demographical characteristics, med-

ical factors, anxiety and depression?

(c) H

ow is the communication about these symptoms?

(d) W

hat is the management for fatigue and pain the cancer

patients received?

2. Methods

2.1 Patients

Forty-five oncologists, pulmonologists, urologists and

radiotherapists in the South and the Southwestern part of the

Netherlands asked out-patients with breast cancer, colorectal

cancer, ovarian cancer, lung cancer or prostate cancer to

participate in the study. The patients were informed about the

study in writing and the physician or an oncology nurse

answered possible additional questions. Patients were included

within 2 months of being informed that their cancer was in

principle incurable. We defined objective criteria for each type

of cancer patients (see Table 1) in order to include an unselected

group of patients for whom it was expected that 80% would

decease within 2 years of inclusion, based on a large cancer

registration database [25]. Patients had to be able to read and fill

in a questionnaire in the Dutch language. No other exclusion

criteria were applied. Patients were only included after they had

given written informed consent to their physician. Based on this

consent, patients received a letter from the researchers asking

e 1

sion criteria

of cancer Disease stage diagnosed withi

st cancer Metastatic disease at primary

systems after primary treatme

rectal cancer Locally advanced unresectable

or locally recurrent disease

rian cancer Recurrent disease

g cancer Metastatic disease or locally a

tate cancer Hormone independent disease

them to fill in a questionnaire and to make an appointment for

an interview.

2.2 The questionnaire and the interview

The written 14-page questionnaire was filled out by the

patients at home. It contained mainly structured questions about

socio-demographic characteristics of the patients (sex, age,

civil status and income), psychological status measured by The

Hospital Anxiety and Depression Scale (HADS) [26], and other

variables that were not used in this study.

Shortly after completing the written questionnaire, all

patients were personally interviewed at home by 1 of 11 trained

female interviewers. The interviewers were prepared for

interviewing patients with advanced cancer in a 2-day course

in interview techniques, by a trainer who was a psychologist

experienced in consultation concerning death, loss and grief.

The interviewers were psychologists (7x), social workers (3x)

and a physician (1x). Interviewers were non-selectively asked

to interview patients, depending on their place of residence and

availability.

In the interview manual, validated instruments were used

whenever available. The length of the interview was between 1

and 1.5 h. The level of pain and fatigue was assessed with the

European Organization for Research and Treatment of Cancer

Quality of Life Core Questionnaire (EORTC QLQ-C30) [27].

The four point answer scales in this questionnaire were

transformed, following the standard procedure, in a scale of 0–

100 (the higher the score the higher the burden of the symptom).

Based on the questionnaire developed by Osse et al. [28] we

asked patients whether and when they had discussed their

fatigue and pain with several healthcare professionals. We

further assessed disease characteristics (type of cancer, disease

duration), previous cancer therapy (surgery, radiotherapy,

chemotherapy), previous and current treatment for fatigue

and pain.

Further details about the instruments and the study are

available in the published PhD thesis by De Vogel-Voogt [24]

and in other publications [6,29,30].

2.3 Statistical analysis

Descriptive statistics were applied to analyze the socio-

demographic and medical status, the level of fatigue and pain

complaints, and the received treatment for these symptoms.

Student’s t-tests and variance analyses, with an alpha level of

n 2 months before inclusion

presentation (in any organ system) or metastatic disease in at least two organ

nt

disease or metastatic disease (without options of curatively aimed surgery)

dvanced disease without curatively aimed treatment options

and increasing PSA level (PSA > 20 ng/ml)

Table 3

Level of fatigue and paina among patients with incurable cancer

N (%) Mean (S.D.)

Fatigue 112 (90) 45.6 (27.7)

No fatigue 13 (10) 0.00 (0.00)

Total 125 (100) 40.9 (29.7)

Pain 60 (48) 44.4 (28.2)

No pain 65 (52) 0.00 (0.00)

Total 125 (100) 21.3 (29.6)

a EORTC, range 0–100.

S. Collins et al. / Patient Education and Counseling 72 (2008) 102–108104

0.05 (two-tailed), were used to examine whether the level of

fatigue or pain were related to patient characteristics,

communication about fatigue and pain, and the treatment of

these symptoms. Pearson’s correlation coefficients were

calculated for associations between depression, anxiety, pain

and fatigue.

3. Results

Of 200 identified patients, 8 had died before an interview

could take place. Of the 192 eligible patients, 128 agreed to

participate (response rate: 67%). Reasons mentioned by the

patients not to participate were: participation is too burdensome

(N = 29), poor physical and/or mental condition (N = 18). In 17

cases the reason for not-participating was unknown. Partici-

pants were on average younger (mean age was 63.6 years vs.

67.3 years; p = 0.02) than non-participants. There were no

differences between participants and non-participants regard-

ing sex, marital status, income, primary diagnosis, metastases,

co-morbidity, and the previous use of chemotherapy, radio-

therapy or surgery. Sometimes patients agreed to participate

and filled out the written questionnaire, but were unable or

unwilling to be interviewed on all topics of the interview

schedule. Therefore, in three cases data on the treatment of

fatigue and pain were missing. So in total 125 patients were

included in this study.

Table 2 shows, based on questions in the questionnaire, that

equal proportions of men and women participated in the study

(48% vs. 52%). Seventy-seven percent of the patients were

Table 2

Patients characteristics (N = 125)

N (%)

Age: mean (S.D.) 63.6 (10.5)

Sex

Male 60 (48)

Female 65 (52)

Civic status: living

With partner 96 (77)

Without partner 29 (23)

Net income per month

<s1360 49 (39)

�s1360 57 (46)

Unknown 19 (15)

Type of cancer

Breast 31 (25)

Lung 51 (41)

Colorectal 23 (18)

Ovarian 12 (10)

Prostate 8 (6)

Disease duration

�6 months 74 (59)

>6 months 51 (41)

Anti-cancer treatment previous to inclusion

Surgery 59 (47)

Radiotherapy 45 (36)

Chemotherapy 94 (75)

Hormone therapy 27 (21)

living with a partner. Most patients (75%) had received

chemotherapy. In the interview, some of the patients mentioned

that they would receive surgery (N = 4), radiotherapy (N = 9),

chemotherapy (N = 6), or hormone therapy (N = 3) in the near

future.

3.1 Level of fatigue and pain

The mean EORTC fatigue level, measured in the interview, of

all patients was 40.9 (Table 3). Ninety percent (90%) of all

patients reported to suffer from fatigue. Mean fatigue level of the

patients who experienced fatigue was 45.6. Patients who lived

without a partner reported a significantly higher level of fatigue

than others (mean levels of fatigue were 51.0 vs. 37.8; p = 0.04)

The mean pain level of all patients was 21.3. Forty-eight

percent (48%) of all patients indicated to have pain. The mean

pain level of the patients with pain was 44.4. Moreover, patients

who had a lower income tended to have a higher pain level than

patients who had a higher income (mean level of pain was 27.2

vs. 16.7; p = 0.06).

In general, age, sex, type of cancer, disease duration and type

of previous cancer therapy were not related to the levels of the

reported fatigue and pain.

Fatigue and pain both correlated with the scores for

depression (r = 0.32, p < 0.001 and r = 0.24, p = 0.007,

respectively) and anxiety measure, as measured by the HADS

(r = 0.27, p = 0.003 and r = 0.24, p = 0.006, respectively).

Fatigue and pain were also related to each other (r = 0.53,

p < 0.001).

3.2 Treatment of fatigue

Forty-six percent (46%) of all patients received some type of

treatment for their fatigue, as they report in the interview. The

patients who received treatment for their fatigue (57/125)

reported a significant higher level of fatigue, despite treatment.

Reported types of care for fatigue included medical treatment

(15%), advice from a healthcare professional (15%), and family

support (20%). Sixty-nine percent of the patients (N = 50)

answered the question about actions they took on their own to

address their fatigue: no action (26%), resting (44%), use of

vitamins and diet (10%), movements (8%), listen to the body

(8%), reading a leaflet (2%), discuss it with a health care

provider (2%).

Table 4

Management of fatigue and fatigue levels

N (%) Levels of fatigue, mean (S.D.) Statistics, p-valuea

Treatment/advice/help/action against fatigue

Yes 57 (46) 47.0 (29.1) 0.04

No 68 (54) 35.8 (29.5)

Recent discussion of fatigue

Discussed fatigue less than 1 month ago 37 (30) 59.5 (27.7) <0.0005

Discussed fatigue more than 1 month ago 18 (15) 42.0 (30.4)

Did not discuss fatigue 69 (56) 30.4 (25.9)

Recent fatigue treatment change

Treatment changed less than 1 month ago 5 (4) 48.9 (29.0) 0.72

Treatment changed more than 1 month ago 10 (8) 44.4 (35.5)

Did not change treatment 106 (88) 39.6 (29.7)

a One-way analysis of variance (ANOVA).

S. Collins et al. / Patient Education and Counseling 72 (2008) 102–108 105

In total, 45% of all patients indicated to have discussed their

fatigue (55/124) with a healthcare professional (Table 4).

Patients who had discussed their fatigue during the preceding

month (30/124) had significantly higher levels of fatigue than

patients who had never discussed their fatigue with healthcare

professionals. Patients discussed their fatigue with clinical

specialists (63%), general practitioners (14%), nurses (17%) or

others (6%). The level of fatigue was not related to the

profession of the healthcare provider with whom the fatigue

complaints were discussed.

The management of fatigue had recently changed (1 month

prior to the interview) in 4% of the patients, mostly initiated by

clinical specialists (80%).

3.3 Treatment of pain

Twenty-nine percent (29%) of all patients received pain

treatment, 16% had stopped pain treatment, and 55% never had

pain treatment, as they report in the interview. The patients who

received pain treatment at the time of the interview had a

Table 5

Management of pain and pain levels

N (%)

Received treatment 35 (29)

Stopped treatment 20 (16)

Never had treatment 68 (55)

Had the day before the interview

Morphine (with/without other pain med.) 8 (6)

Other pain medication 26 (21)

No pain medication 91 (73)

Discussion of pain with caregiver

Discussed pain less than 1 month ago 44 (35)

Discussed pain more than 1 month ago 25 (20)

Did not discuss pain 56 (45)

Recent pain treatment change

Changed treatment less than 1 month ago 26 (21)

Changed treatment more than 1 month ago 29 (24)

Did not change treatment 68 (55)

a One-way analysis of variance (ANOVA).

significantly higher level of pain complaints than other patients,

despite treatment. During the day prior to the interview 6% of

the patients had used morphine, 21% had used other pain

medication, and 73% had not used drugs to alleviate the pain.

Patients who used no pain medication had significantly lower

levels of pain than the other patients.

In total, 55% of the patients indicated to have discussed their

pain with a healthcare professional (Table 5). Patients who had

never discussed their pain with healthcare professionals (56/

125) had significantly lower levels of pain than others. Patients

discussed their pain with clinical specialists (52%), general

practitioners (20%), nurses (18%), or others (9%). The level of

the pain was not related to the profession of the healthcare

provider with whom the pain was discussed.

Pain treatment had been recently changed (in the last month

prior to the interview) in 21% of the patients. These patients had

higher levels of pain than patients in whom pain treatment had

not been changed recently. Specialists (73%), general practi-

tioners (15%), a nurse (4%) or others (8%) had initiated the

adjustment of the pain treatment during the previous month.

Levels of pain, mean (S.D.) Statistics, p-valuea

45.2 (33.2) <0.0005

19.2 (28.8)

9.8 (19.8)

50.0 (38.8) <0.0005

39.7 (31.3)

13.6 (24.2)

39.0 (32.3) <0.0005

26.0 (32.3)

5.4 (13.5)

49.4 (36.7) <0.0005

23.6 (26.2)

9.8 (19.8)

S. Collins et al. / Patient Education and Counseling 72 (2008) 102–108106

The level of pain was not related to the discipline of the

healthcare provider who adjusted the pain treatment.

4. Discussion and conclusion

4.1 Discussion

This study gives an overview of fatigue and pain and their

management in a sample of patients with advanced cancer. We

aimed to describe similarities and differences in presence and

the management of these two most common symptoms in

advanced cancer patients. We found that the large majority

experienced fatigue and that half of the patients in our sample

experienced pain. About half of the patients discussed their

fatigue and pain with a healthcare professional. Far less patients

received medical treatment for their fatigue and pain.

Depending on the patient sample and the methodology

employed, it is estimated that 60–100% of cancer patients

receiving anti-tumor treatment experience fatigue [15,31].

Cancer-related pain is experienced by 60–70% of those patients

[32]. In our study, patients who received care for their fatigue and

pain report significantly higher levels of fatigue and pain.

Apparently, treatment was not so effective that the levels of

fatigue and pain were reduced to normal. In our patient-group the

EORTC level of fatigue and pain was 42.7 and 22.4, respectively.

Kaasa et al. found for the general Norwegian population a fatigue

level of 25.0 and a pain level of 20.5 [33]. For patients with an

incurable advanced malignant disease and a life expectancy

between 9 and 2 months they found a fatigue level of 63.2 and

pain level of 47.4. For patients with bone metastases (with a life

expectancy of more than 4 months) a fatigue level of 54.4 and a

pain level of 72.0 were found. It shows that the patients from our

group, most of whom are only at the beginning of their palliative

phase, have more fatigue and pain than the general population,

but less than palliative care patients in a further developed stage,

and patients with bone metastases.

A substantial correlation was found between fatigue and

pain. Such a correlation has also been reported elsewhere [34],

but the specific relation between fatigue and pain remains

unknown [5]. Cancer-related fatigue can in some cases be

attributed to the disruption of sleep by opioid medication taken

by cancer patients [35].

A strong correlation was in our study found between both

pain and depression and fatigue and depression. Pain can be

seen as a chronic stressor, that can cause depression through

alterations in the HPA-axis [36]. Depression on the other hand

can enhance the sensation of fatigue, but fatigue might also

cause depression [37]. Barsevick et al. [38] also found a strong

correlation between fatigue and depression, but they stressed

that this relationship is strongly influenced by the functional

status of the patients. In a study by Teunissen [39] no

correlation was found between anxiety or depression and pain

or fatigue. However, this was a study in a hospitalized advanced

cancer population, which could have received specific types of

treatment or support in the hospital. The specific mechanisms of

the relationship between physical and psychosocial symptoms

in advanced cancer patients remains to be further investigated.

Our study further reveals a few other factors influencing the

level of pain and fatigue. Living without a partner was related

to higher levels of fatigue. No studies have been done to

examine the relationship between living with or without a

partner and the level of fatigue. However, previous research in

a population of cancer patients has shown that patients who

were married reported less depressive symptoms and better

quality of life [40]. In our study patients who were living

without a partner did not report to be more depressed or more

anxious than patients who were living with a partner. Other

demographic and medical factors did not influence the level of

pain and fatigue. Teunissen [39] report that age was not related

to the frequency of pain and fatigue in hospitalized advanced

cancer patients either.

Our patients used a diversity of means to address fatigue.

Many patients (44%) tried to diminish their fatigue by resting.

A critical aspect of cancer-related fatigue is that it occurs

despite adequate amounts of rest or sleep [41]. However, Nail

et al. [42] and Dodd [43] reported that patients receiving

radiotherapy or chemotherapy found that taking naps and

decreasing activity were moderately effective in reducing their

fatigue. Taking a nap might be helpful, but some patients with

severe fatigue stay in bed all day, which may lead to a loss of

physical functioning, which also induces fatigue and may

worsen complaints [44]. Active management of fatigue seems

to occur in a minority of all patients. Only half of the patients

with fatigue complaints said that they had discussed their

fatigue with caregivers and recent adjustment of its manage-

ment had occurred in only a small minority.

Patient-related barriers might be responsible for the limited

communication about fatigue. Passik et al. [31] reported that

the most frequently mentioned reasons for the lack of

communication about fatigue are the physicians’ failure to

offer interventions, patients’ lack of awareness of effective

treatments for fatigue, patients’ dislike to treat fatigue with

medications, and patients’ reluctance to complain to the

physician.

4.2 Conclusion

This study examined experiences with fatigue and pain

among incurable cancer patients. The results show that 45%

had discussed fatigue with a healthcare professional and 55%

had discussed pain. Fifteen percent reported to receive medical

treatment for their fatigue and 29% received pain treatment.

Treatment for fatigue and pain treatment had been recently

adjusted in 4% and 21% of the patients, respectively. We

conclude that, although fatigue is a more common problem than

pain in patients with incurable cancer, less attention in the care

is paid to fatigue and its treatment than to pain.

4.3 Practice implications

Fatigue is often thought of as an unavoidable complication

of cancer and its treatment. However, some promising results

have been reported with physical exercise, relaxation therapy,

information, psychological interventions, complementary

S. Collins et al. / Patient Education and Counseling 72 (2008) 102–108 107

approaches, behavioral interventions and pharmacological

interventions [7,34,44]. Thus, education of patients and doctors

about ways to manage complaints of fatigue in patients with

incurable cancer could be helpful. Our findings indicate that

although fatigue is a more common problem than pain in

patients with incurable cancer, fatigue is managed less actively.

Patient and provider education about fatigue and options for

treatment might bring fatigue in the same focus of attention as

pain.

Conflicts of interest

All authors declare that they have no conflicts of interest

regarding this paper.

Acknowledgements

We would like to thank the patients and their relatives who

participated in this study, the physicians, and the oncology

nurses who invited them to participate. Funding: This study was

funded by a grant from the Dutch Ministry of Health, Welfare

and Sport. This sponsor was not involved in the study design; in

the collection, analysis and interpretation of data; in the writing

of the report; and in the decision to submit the paper for

publication.

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