Swedish nurses' estimation of fatigue as a symptom incancer patients ± report on a questionnaire

KARIN MAGNUSSON, RN, Department of Oncology, Sahlgrenska University Hopital, Gothenburg; ELISA-

BETH KARLSSON, RN, Department of Oncology, Norrlands University Hospital, UmeaÊ; CATHARINA

PALMBLAD, RN EdD, Department of Oncology, Danderyd Hospital, Danderyd; CHRISTINA LEITNER &

AGNETA PAULSON, Janssen-Cilag AB, Sollentuna, Sweden

MAGNUSSON K. KARLSSON E., PALMBLAD C., LEITNER C. & PAULSON A. (1997) European Journal

of Cancer Care 6, 186±191

Swedish nurses' estimation of fatigue as a symptom in cancer patients ± report of a questionnaire

Many studies show that chronic fatigue is the most frequently reported symptom related to cancer and its

treatment. In order to evaluate the problem in Sweden, a questionnaire was mailed to 442 registered

nurses in the autumn of 1995 with the aim of determining cancer nurses' views of the nature and causes

of cancer-related fatigue and which, if any, nursing interventions they employed in the management of

this problem. The response rate was 49%. The responses showed that these nurses regarded fatigue as the

most common symptom in cancer patients, but there were few established nursing interventions. Also,

nurses wanted further education and tools for evaluation of fatigue, its causes and treatment.

Keywords: chronic fatigue, cancer, questionnaires, nurses' perception.

Symptoms

INTRODUCTION

Fatigue is a common feeling, experienced periodically by

most people and is often associated with feelings of

discomfort, weakness and decreased performance. As a

symptom in cancer patients' fatigue often has a consider-

able impact on cancer care, for example patients may

discontinue treatment, the doses of various anti-cancer

treatments may be reduced and the patient's quality of life

can be reduced significantly [Winningham et al., 1994]. It

is also conceivable that vague symptoms, such as weari-

ness and weakness, can affect the patient's performance

to a greater extent than some of the acute side effects

of treatment, such as nausea and vomiting [Nerentz

et al., 1982].

Fatigue is a multifactorial and multidimensional symp-

tom, including biological, psychological, social and perso-

nal factors that possibly influence onset, impact,

expression, duration and severity of the fatigue experience

[Richardson, 1995). It can be defined as a self-experienced

phenomenon, which varies in extent, frequency and

duration [Irvine et al., 1994]. Patients often describe

fatigue as tiredness, weakness, lack of energy, exhaustion,

a `trance-like' sleep, depression, difficulties to concentrate,

a feeling of illness, asthenia, weariness, sleepiness,

decreased motivation and decreased mental performance

status [Winningham et al., 1994].

Fatigue is the most frequently reported symptom related

to cancer and cancer treatment and can become a chronic

problem which is not relieved by a good night's sleep or by

additional rest [Pickard-Holley, 1991; Smets et al., 1993;

Winningham et al., 1994]. Irvine et al. [1991] observed that

80±96% of patients, receiving chemotherapy, experienced

fatigue. Likewise, data on patients receiving radiation

therapy showed that fatigue increased during treatment,

decreased when treatment was completed [Irvine et al.,

1991] but may persist up to 3 months after cessation of

treatment [King et al., 1985]. Fatigue is also experienced by

Correspondence address: Karin Magnusson, Research Nurse, Department

of Oncology, Sahlgrenska University Hospital, S-413 45 Gothenburg,

Sweden.

European Journal of Cancer Care, 1997, 6, 186±191

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# 1997 Blackwell Science Ltd, European Journal of Cancer Care, 6, 186±191 187

many patients after surgery, after infections and as a result

of inflammatory disorders [Christensen et al., 1982].

The causes of fatigue in cancer patients are not well

characterized, but may include the accumulation of toxic

products of radiation and/or chemotherapy, chronic pain,

hypermetabolism associated with active tumour-growth,

infections, surgery, depression, anxiety, nausea, difficul-

ties in sleeping or effects of other drugs, e.g. as anti-

depressives or alcohol [Winningham et al., 1994]. It is also

common for cancer patients to suffer from anaemia,

caused by side-effects of treatment such as bone marrow

suppression and anorexia, haemorrhage or following

surgery. With reduced supply of oxygen to the tissues

symptoms of tiredness, weakness, depression and breath-

lessness arise, as well as escalation of angina pectoris in

patients with pre-existing angina [Rieger Trahan &

Haeuber, 1995].

Since fatigue has a major effect on the person's quality of

life, coping, social life, working capacity and sexual life, it

is important to recognize it and to establish guidelines for

treatment. Many other cancer symptoms, such as pain and

nausea and vomiting, are ameliorated using well-estab-

lished interventions, but the same cannot be said of

fatigue [Pickard-Holley, 1991]. This could be due to the

fact that one focuses, clinically, on one problem at a time

and that fatigue has only recently been identified as a

problem. By better understanding the factors that cause

fatigue, the nurse may be able to plan interventions with

the aim of reducing fatigue or making it easier for the

patient to accept it [Pickard-Holley, 1991].

In Spring 1995 a `National Working Team on Fatigue'

was established in Sweden. The purpose of the group's

work was to concentrate on fatigue as a symptom in the

patient with cancer. As a first step, the group mailed a

questionnaire to all oncology nurses in Sweden (vide infra)

in order to determine if they perceived that fatigue was a

problem for cancer patients and if so, its frequency and

extent, and if there were any established nursing inter-

ventions for that patient.

MATERIAL AND METHODS

A questionnaire comprising 10 items was constructed.

Some of the questions were open-ended allowing the

respondent to use their own words. Two questions

concerning the nurse's place of work and number of years

in the profession were included, since if, how, when and to

what extent the nurse met patients suffering from fatigue

was thought to be of significance. One problem we faced in

Sweden (probably shared with other countries where

English is not the native tongue) is that Swedish has no

word with the exact tenor of the word `fatigue'. We

resorted to using the Swedish word for `tiredness'

(troÈ tthet), which does not share all the nuances of the

word fatigue, but has the advantage of being understood

by all nurses and patients. When used, fatigue was

explained as `feeling tired, feeble, weak and/or ex-

hausted'. The study was done in cooperation with

clinically active nurses and Janssen-Cilag AB. The ques-

tionnaire was never piloted.

The 442 questionnaires were mailed according to the

list of members of the Swedish Society for Nurses and

Technicians in Cancer Care. No reminders were sent out.

All returned questionnaires were processed in the statis-

tical program, Market View for Windows. The information

from the open-ended questions were dealt with through

classification and/or categorization.

RESULTS

Of the 442 questionnaires mailed, 215 were returned

(response rate = 49%). Since some of the questionnaires

were incompletely filled out, the number of replies for

evaluation varied. Overall, 210 replies were evaluable.

Questions

1 Work location

Forty-three per cent stated that they worked in an in-

patient's ward, 26% that they worked in a radiation

treatment clinic, 14% in an out-patient's consultation

clinic and 12% in an out-patient treatment clinic. The

remainder had no contact with patients because of, for

example, administrative work or working at the Univer-

sity (College) of Nursing. Thus, 55% of the nurses worked

in wards or day care clinics. The majority of these nurses

met patients receiving chemotherapy or patients with

advanced disease.

2 Work experience

Thirty per cent of the nurses had worked for 5±9 years

with cancer care and 26% for 10±14 years (range: 6

months±43 years in cancer care).

3 Ranking of symptoms

On a scale of 1±10 each respondent ranked the frequency

of different symptoms in the patients (1 = most frequent

and 10 = most rare). Nine symptoms were given (anxiety,

nausea, loss of hair, tiredness, constipation/diarrhoea,

pain, lack of appetite, trouble of sleeping, breathlessness)

and one line was given for optional symptoms. One

hundred and sixty-four replies were possible to evaluate

for these items. The low number was due to the fact that

several respondents had ranked all 9±10 alternatives or

they had put the same ranking-number on all the

alternatives. Twenty-five per cent had ranked tiredness

as the most frequently occuring symptom, whereas 20%

ranked pain, 20% anxiety, 12% nausea, 9% constipation/

diarrhoea and 1% breathlessness as the most frequently

occuring symptom.

4 Is fatigue a problem for your patient?

The replies, ranked on a 5-graded scale from `not at all'

to `very much', showed that many nurses believe

that fatigue is a major problem for the patient: 27% had

replied `very much', 40% replied `much' and no one

replied `not at all'.

5 How do you recognize the patient's fatigue?

The number of evaluable replies was 203 and the total

percentage of replies exceeded 100% since many defined

various procedures in their reply. Ninety-eight per cent

replied that the patient stated that he/she felt tired, 36%

replied that they had checked the patient's haemoglobin

value, 31% replied that the patient showed symptoms of

anaemia, such as breathlessness, angina pectoris, etc.,

21% replied that the patient wished to give up treatment

because of fatigue (Fig. 1).

6 What do you do if the patient says he/she is tired?

Since this was an open-ended question, we have made a

categorization of the 213 replies. Also, on this question the

replies exceeded 100% since many defined various

procedures in their replies.

Sixty-six per cent replied that they initiated information

with the aim of making the patient understand that

fatigue was a normal reaction and to give the patient

support. Several nurses stated they would include the

patient's next of kin. When interviewing the patient 59%

of the nurses would also try to identify the cause of

fatigue, as a basis for further interventions. Examples of

such measures were blood tests, primarily haemoglobin

value, status of nutrition (e.g. weight), blood pressure,

temperature, reports of pain, anxiety or depression. Thirty-

three per cent gave the patient advise on nutrition, rest,

sleep, to start out-door exercise and not to hesitate to ask

for help with domestic activities or other similar tasks.

Nine per cent initiated pharmacological interventions,

such as checking the patient's medication to identify a

drug as the cause for fatigue or to recommend starting a

low dose steroid treatment. Approximately 2% replied

they took no actions or had no contact with patients

(Figure 2).

7 In what way do you think the patient's fatigue can be

reduced?

The number of replies were 213. A categorization of the

replies was made and since several alternatives were given

the total percentage exceeded 100%. Sixty-one per cent

replied that one must improve the information and

support given to the patient. Nearly as many (60%)

suggested some kind of active treatment, e.g. being

generous with blood transfusions, adjusting the cancer

treatment according to the patient's symptoms and, at an

early stage, to check the patient's nutritional status and, if

needed, engage a dietician. Ten per cent suggested that, at

an early stage of the disease or treatment, the patient

should be given advice on life-style, thus having an

optimized starting position. Three per cent gave no

answers, stating that they first needed further knowledge

of this particular area.

188 # 1997 Blackwell Science Ltd, European Journal of Cancer Care, 6, 186±191

MAGNUSSON ET AL . Swedish nurses' estimation of fatigue

*

Figure 1. Question: how do you recognise the patient's fatigue.*Symptoms of anaemia other than ;Hb.

8 Do you need anything to be able to take care of the

patient's fatigue?

The number of replies were 197 and the total percentage of

replies therefore exceeded 100% Seventy-seven per cent

replied education, 50% brochures, 39% suggested other

tools, such as a patient diary, measuring devices, and 26%

of the replies concerned miscellaneous needs, e.g. more

time to spend with the patient (Figure 3).

9 What do you think causes the patient's fatigue?

The number of replies was 204, with a total percentage of

replies exceeding 100%. Ninety per cent replied it was

caused by psychological factors. Just as many (90%) said it

was caused by chemotherapy, whereas 76% stated radia-

tion therapy to be the reason, 75% lack of appetite or

weariness with food, 64% anaemia, 43% physiological

defence mechanisms and 21% replied various causes,

primarily the patient's anti-cancer therapy. Most of the

respondents worked in an in-patient ward, where intensive

chemotherapy was adminstered frequently, which may

explain why symptoms such as anorexia and anaemia

were frequently identified (Figure 4).

10 Do you inform the patient about fatigue?

The number of replies were 197. Ninety-four per cent

replied yes and 2% replied they would wait and see or they

European Journal of Cancer Care

# 1997 Blackwell Science Ltd, European Journal of Cancer Care, 6, 186±191 189

Figure 2. Question: what do you do of the patient says he/she istired?

Figure 3. Question: do you need anything to enable you to takecare of patient's fatigue?

factors

Figure 4. Question: what do you think causes the patient'sfatigue?

Conversation/ Look for Give Pharma- Other

information symptoms/ advice cological

markers treatment

Action

had no contact with patients. Of the 94% who replied `yes'

(n = 184 persons) 25% stated that they informed the

patient about fatigue at the first visit, while 9% said they

would inform the patient only after the symptom had

occurred. Five per cent replied that they, in addition to the

verbal information, would give the patient written

information on fatigue (Fig. 5).

DISCUSSION

This survey identified that Swedish cancer nurses esti-

mate that tiredness/lack of strength to be the most com-

mon symptom in the cancer patient; that there were few

established nursing procedures for the patient; instead

general advice and recommendations were given without

knowing the exact cause of fatigue and that the nurses

wanted further education and tools for assessment of

fatigue, its causes and treatment when caring for the

patient. On question three, 25% of the nurses ranked

tiredness as the most frequently occuring symptom of the

patients. This is in contrast to what the patients seem to

perceive. In a study by Blesch Smith et al. (1991) patients

with breast cancer and lung cancer were compared.

Fatigue was present to some degree in 99% of the patients.

The incidence of fatigue among patients receiving radia-

tion therapy has been reported by 65±100% of the patients

(Peck & Boland, 1977; Kubricht, 1984; King et al., 1985;

Oberst et al., 1991; Nail, 1993). For patients receiving

chemotherapy there is clear evidence that fatigue is the

most common side-effect (Richardson, 1995). Studies

involving patients receiving chemotherapy for different

types of cancer (Nerentz et al., 1982; Cassileth et al., 1985;

Nail & King, 1987; Nail et al., 1991) report the occurrence

of fatigue ranging from 59 to 82% (Richardson, 1995).

Meyerowitz et al. (1979) reported fatigue in 96% of the

patients treated with adjuvant chemotherapy due to breast

cancer. There is also a discrepancy between the patients'

(Winningham et al., 1994) and the Swedish nurses'

perceptions on how distressing the problem is.

The reason for this discrepancy is hard to define. Maybe

it is due to the fact that fatigue is a recently observed

symptom and that the nurses do not know what signs and

signals to look for.

On question number 5, where we asked how the nurse

recognized that the patient suffered from fatigue, 21%

replied that it was when the patient asked to discontinue

therapy because of this symptom. This indicates that there

is a need for suggestions on established procedures to be

able to help the patient to complete ongoing therapy.

Since the results of the oncological therapy depends on the

dose intensity fatigue might interfere with or impede the

result of the therapy.

Fatigue is not a new concept in oncology. What is new is

that nurses no longer accept fatigue as something normal,

regardless of its frequency and intensity. Instead, nurses

now want to understand, prevent or help the patient.

Often this implies various procedures with the intention

of improving the patient's quality of life. The traditional

nursing procedures are, among others, rest, dietary advice,

and treatment of possible symptoms such as anaemia and

depression. In the study by Nail et al. [1991] on various

self-care activities, it appeared that patients believed sleep

to be the most efficient way to deal with their fatigue.

Today, one looks into the possibility to help patients by

recommending various physical activities, since a number

of studies show that the patient's well-being is increased

and the fatigue decreased by means of these interventions

[Winningham, 1991; Yuong-McCoughan et al., 1991;

Graydon et al., 1995]. This might, in addition, lead to a

decrease in other symptoms related to cancer or cancer

therapy.

The limitations of this study, among other things, is

that the questionnaire was never piloted and that will, of

course, limit the conclusions of the study. For example,

question number 3 was hard to evaluate due to the

respondents different ways of answering. The explanation

for the rather low response rate (49%) is hard to define but

might reflect the fact that the nurses don't see fatigue as a

problem. At the time intervention for fatigue was a quite

unknown concept among oncology nurses in Sweden.

MAGNUSSON ET AL . Swedish nurses' estimation of fatigue

190 # 1997 Blackwell Science Ltd, European Journal of Cancer Care, 6, 186±191

No Other

Yes

Figure 5. Question: do you give information to the patient aboutfatigue?

Today, when fatigue is much more highlighted we prob-

ably would get back a larger number of the questionnaires.

We intend to use the material from this questionnaire as

a base for discussions among Swedish oncology nurses on

further initiatives. This may result in fatigue-related

brochures (both for the nurse with an educational purpose

and for the patient with the purpose of informing and/or

educating) or tools to facilitate assessment. We hope that

such initiatives would improve the quality of care in the

area of cancer-related fatigue.

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