Download Prevalence of distress in cancer patients undergoing chemotherapy

Asia–Pacific Journal of Clinical Oncology 2007; 3: 219–223
doi:10.1111/j.1743-7563.2007.00114.x
ORIGINAL ARTICLE
Prevalence of distress in cancer patients
undergoing chemotherapy
Nor ZAINAL,1 Koh HUI,1 Ting HANG1 and Anita BUSTAM2
1
Department of Psychological Medicine and 2Clinical Oncology Unit, Faculty of Medicine, University of Malaya, Kuala
Lumpur, Malaysia
Abstract
Aim: Feeling distressed is often a normal reaction to the diagnosis of cancer and cancer treatment. However,
if excessive, distress may lead to more disabling conditions such as depression and anxiety. The aims of the
study were to determine the prevalence and level of distress in patients with cancer who were undergoing
chemotherapy and to examine the associated factors related to psychological distress in these patients.
Methods: Adult patients with confirmed cancer who were undergoing out-patient chemotherapy at the
Clinical Oncology Unit, Universiti Malaya Medical Centre were invited to participate in the study. They
were assessed on their sociodemographic profiles, clinical history, distress level as measured using the
‘Distress Thermometer’, and problems checklist on practical, family, emotional and physical symptoms. The
Hospital Anxiety Depression Scale (HADS) was used by patients to report anxiety and depression.
Results: One hundred and sixty-eight patients with mean age of 50 years participated in the study. The
prevalence of psychological distress determined by the ‘Distress Thermometer’ was 51%. HADS found the
prevalence of depression/anxiety to be 32%. There was no significant association between distress and
the primary site of cancer, the phase of chemotherapy and the sociodemographic profiles except for age
(r = -0.21, P = 0.007). Distress was significantly associated with practical, family and emotional problems.
Some of the physical problems such as appearance, breathing, changes in urination, constipation, eating,
fatigue, getting around, memory/concentration, nausea, pain and sleep were also significantly associated
with distress.
Conclusion: Cancer patients undergoing chemotherapy experienced high level of distress. This finding
should alert oncologists that some patients exhibiting these signs of distress may need referral to the mental
health team.
Key words: cancer, chemotherapy, distress.
INTRODUCTION
Distress is a multifactorial unpleasant emotional experience of a psychological (cognitive, behavioral, emotional), social and/or spiritual nature and in this case
Correspondence: Professor Dr Nor Zuraida Zainal,
Department of Psychological Medicine, Faculty of Medicine,
University of Malaya, 50603 Pantai Valley, Kuala Lumpur,
Malaysia.
Email: [email protected], [email protected]
Accepted for publication 2 September 2007.
© 2007 The Authors
Journal Compilation © Blackwell Publishing Asia Pty Ltd
may interfere with the ability of the patient to cope with
his or her disease (i.e. cancer), its physical symptoms and
its treatment. The term ‘distress’ was chosen because it is
more acceptable and less stigmatizing than ‘psychiatric’,
‘psychosocial’, or ‘emotional’. Distress extends along a
continuum, ranging from common normal feelings of
vulnerability, sadness and fears to problems that can
become disabling, such as depression, anxiety, panic,
social isolation and existential and spiritual crisis.1
The World Health Organization currently forecasts
that 15 million people annually, worldwide, will receive
a diagnosis of cancer in 2020, representing a 50%
increase from current numbers.2 Many individuals have
220
described diagnosis of cancer as devastating, producing
a more alarming response than that of any other disease
process.3 Therefore, we can expect a rise in the number
of cancer patients suffering from cancer affiliated
distress.
A lot of work has been done recently in determining
psychological distress in cancer patients.4–6 The prevalence of long-term psychological distress in cancer
patients ranges from 20 to 66%.7,8 Anxiety is common
at crisis points such as the start of a new treatment or the
diagnosis of recurrence or illness progression.9 Depression has been given much attention in cancer patients as
depressive symptoms can be a normal reaction, a psychiatric disorder or a somatic consequence of cancer or
its treatment. The rate of depression in cancer patients
is higher than in the general population and at least as
high as the rate associated with other serious medical
illnesses.10
Most cancer patients receiving chemotherapy experience psychological distress as a result of negative effects
of the chemotherapeutic agents.11 Nausea and vomiting,
tiredness or fatigue, sore mouth, reduced fertility,
peripheral neuropathy and skin problems are common
side-effects of chemotherapy agents.12
The National Comprehensive Cancer Network
(NCCN) has developed guidelines for Distress Management.1 The panel members responsible for the above
guidelines recommend the use of a simple tool for
screening distress level because clinically significant distress is frequently overlooked in many patients.13 It was
found that the use of the single-item Distress Thermometer as a tool to identify cancer patients with psychological distress was comparable to the longer measures
for screening distress.5
Maintaining quality of life is extremely important.
Psychological adjustment and its components need to be
defined urgently and understood, to identify effective
therapeutic approaches targeting mood and anxiety disorders, and, if possible, to prevent their development.
Therefore, research on determining the prevalence and
level of distress in patients with cancer who are undergoing chemotherapy is required especially at Universiti
Malaya Medical Center where a large number of cancer
patients are being treated and followed up everyday. It is
also interesting to examine the associated factors related
to psychological distress in these patients.
METHODS
The present study was conducted at the Clinical Oncology Unit, Universiti Malaya Medical Center over a
© 2007 The Authors
Journal Compilation © Blackwell Publishing Asia Pty Ltd
N Zainal et al.
three-month period from December 2005 to February
2006. Every consecutive patient that came in for chemotherapy during the study period was invited to participate in the study.
Sample selection
Patients 18 years of age and older with confirmed cancer
and who were undergoing outpatient chemotherapy
were selected. These patients also had good command of
the English language or Bahasa Melayu and were able to
give verbal consent to participate in the study.
Measurement
1 Demographic variables were collected from the case
notes. These included age, sex, marital status, race
and religion.
2 The primary site of cancer and the duration of active
illness were obtained from the case notes. The number
of cycles of chemotherapy received during the interview indicated whether the patient was in the early,
middle or end phase of his/her course of chemotherapy. Because the majority of patients received a
total of six cycles for a complete course of chemotherapy, cycles 1 and 2 were considered as in the early
phase, cycles 3 and 4 as in the middle phase, and
cycles 5 and 6 as in the end phase of a course.
3 The level of distress was measured using a simple tool,
the Distress Thermometer,14 which has been validated
in several studies.15–17 It has also been used in nonEnglish speaking cancer patients.18 However, the tool
has not been validated in Bahasa Melayu and its
reliability in our local population has not been determined. The tool is similar to the 0–10 rating scale
used to measure pain and serves as a rough singleitem question screen, which will identify distress
coming from any source, even if unrelated to cancer.
The patient places a mark on the scale answering:
‘How distressed have you been during the past week
on a scale of 0–10?’ Scores of 4 or more indicate a
significant level of distress.5
4 The Problem List asked patients to identify their
problems in the past week: physical, practical (i.e.
transportation, financial), emotional, familial or
spiritual.
5 Subjects were given the 14-item self-reporting instrument: the Hospital Anxiety and Depression Scale
(HADS).19 The instrument was designed for medically
ill patients and does not include physical symptoms.
The HADS contains seven items that assess anxiety
and seven items that assess depression. It has been
validated in patients with cancer.20 Scores on the
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Distress in cancer patients
HADS do not diagnose anxiety and mood disorder;
they measure the severity of symptoms that suggest
the likelihood that a patient may have a disorder. A
total score of 15 or greater or a score of 8 or greater
on a subscale suggests that a patient may have anxiety
or depressive disorder.
All the questionnaires were available in English and in
Bahasa Melayu. They were collected by the investigators.
Analyzes
The data were tabulated in SPSS program. The prevalence rate and the problem list were described in percentages. The level of distress was expressed in mean
(⫾SD). Association between demographic profiles and
level of distress was analyzed using anova.
The protocol for this study had been approved by the
Ethics Committee of the Universiti Malaya Medical
Center where the work was undertaken. It conformed to
the provisions of the 1995 Declaration of Helsinki.
RESULTS
Of the 207 patients who were approached in the chemotherapy daycare center, 168 (81%) patients consented to participate in the study. The non-responders
had similar distribution in terms of gender, marital
status, primary site of cancer and the duration of active
illness compared to the responders. However, the nonresponders were much older (mean 60 years of age vs 50
years of age) and there were more patients of Chinese
ethnicity.
The socio demographic distribution and the clinical
history of the responders are shown in Table 1. One
hundred and forty-six patients (86.9%) had either early
stage or locally advanced disease treated with curative
intent. The remaining patients had metastatic cancer
and were receiving palliative chemotherapy.
Using the Distress Thermometer, the measured mean
score for distress level was 3.6. Fifty-one percent of all
the cancer patients who were undergoing chemotherapy
indicated distress levels of 4 or more.
Using the HADS-depression subscale, 14 of 168
patients scored ⱖ8. Of the 168 patients, 19 scored ⱖ8
on the HADS-anxiety subscale. For both depression and
anxiety subscales, 21 of 168 patients scored ⱖ8. Therefore, the prevalence of patients that may have had
depression was 21% and those that may have had
anxiety was 24%. The total prevalence of patients that
may have had psychological distress (i.e. depression
and/or anxiety) as determined by HADS was 32%.
Asia–Pac J Clin Oncol 2007; 3: 219–223
Table 1 Socio-demographic profiles and clinical history of
study participants
Features
Age
Mean: 50 years
Sex
Female
Male
Marital status
Single
Married
Widow/separated
Ethnic
Malay
Chinese
Indian
Others
Primary site of cancer
Breast
Colon
Nasopharyngeal
Other
Phase of chemotherapy
Early
Middle
End
Duration of active illness
Frequency = n (%)
130 (77%)
38 (23%)
23 (14%)
135 (80%)
10 (6%)
39 (23%)
96 (57%)
26 (16%)
7 (4%)
99 (59%)
29 (17%)
13 (8%)
27 (16%)
76 (45%)
56 (33%)
36 (22%)
Mean: 14 months
Further analysis of the correlation coefficient found
that the distress score was significantly correlated with
HADS-depression (r = 0.5, P = 0.000) and with HADSanxiety (r = 0.7, P = 0.000).
None of the socio-demographic and clinical features
were significantly associated with distress except for age
where r = -0.21 (P = 0.007). The younger the patient,
the more distressed they were found to be. There was
also no significant difference in the distress score of
patients with metastatic and non-metastatic cancers.
The list of problems reported by the patients and their
association with distress is shown in Table 2.
DISCUSSION
People with cancer have to deal with issues and situations that are very frightening and very challenging, and
that are likely to cause distress. The prevalence of distress found in the present study is in keeping with findings in other studies.7,8 The high level of distress seen in
these patients could be normal responses to the threat
of the illness, uncertainty, side-effects of chemotherapy
© 2007 The Authors
Journal Compilation © Blackwell Publishing Asia Pty Ltd
222
N Zainal et al.
Table 2 List of problems reported by patients and their association with distress
Practical
%
Physical
%
Child care*
Housing*
Insurance/financial*
Transportation*
Work/school*
11
8
32
14
17
Familial*
Dealing with children
Dealing with partner
17
Appearance*
Bathing/dressing
Breathing**
Changes in urination*
Constipation*
Diarrhea
Eating*
Fatigue*
Feeling swollen
Fevers
Getting around*
Indigestion
Memory/concentration*
Mouth sores
Nausea*
Nose dry/congested
Pain*
Sexual
Skin dry/itchy
Sleep**
Tingling in hands/feet
21
6
13
11
18
0.6
31
48
10
7
15
10
23
14
22
13
24
11
29
39
23
Emotional
Depression**
Fears**
Nervousness**
Sadness**
Worry**
Loss of interest in
usual activities**
Spiritual/religious
concerns
21
29
18
30
47
18
7
Significantly higher distress levels: *P < 0.05; **P < 0.001.
agents, loss of control or an underlying psychiatric disorder such as depression and anxiety. Normal responses
in patients with cancer range from sadness, worrying,
fear, isolation, looking for meaning, feeling stigmatized
and being secretive. Following the diagnosis of cancer,
patients might undergo stages of shock, denial, anger,
and then acceptance or depression.
Receiving chemotherapy is an unpleasant experience
due to the toxic effects of the chemotherapy drugs.
Cancer patients may have more fear, nervousness and
anxiety just prior to starting chemotherapy. Uncertainty
as to whether or not they will experience and be able to
cope with potential severe nausea, vomiting, hair loss,
tiredness and other side-effects are their main concerns.
Pre-chemotherapy counseling or education should help
patients overcome their fear. They can be given practical
advice on how to reduce the risk of infection, cope
with nausea and vomiting, and manage tiredness, sore
mouth, hair loss and other symptoms.21
In the present study, psychosocial problems were significantly associated with distress. Financial difficulty is
the main problem because chemotherapy agents are very
expensive. At the University Malaya Medical Center,
civil servants are helped by the government to pay for
their treatment drugs. Poor non-civil servant patients are
© 2007 The Authors
Journal Compilation © Blackwell Publishing Asia Pty Ltd
referred to the medical social work department to
receive financial aid. However, worries persist in these
patients if they are unable to work and need money to
pay for transportation and domestic expenses.
Some of the patients in this study had problems
dealing with their partner or children. Trying to juggle
roles such as husband, wife, mother, father, daughter,
son or breadwinner while trying to cope with cancer and
all the emotions that it can cause can seem impossible to
patients. Cancer patients should try to be realistic about
what they can manage and seek help from their partner,
family or friends before things become too much to cope
with.
Many studies have been conducted to determine if
emotional sates affect outcome and prognosis in cancer
patients. Faller et al.22 found that emotional state
affected the outcome in cancer patients. Depression was
found to have either a positive, negative or mixed association with mortality in cancer patients.23,24 Undetected
or untreated depression may lead to poor pain control,
poor compliance, poor quality of life and less desire for
life-sustaining therapy.
During active anticancer treatment, the diagnosis of
depression is often missed.25 Therefore, it is important to
screen for distress and be able to detect any psychological morbidity, especially depression and anxiety.
Oncologists and other medical personnel such as physicians, nurses and social workers, are encouraged to start
using a simple tool such as the Distress Thermometer to
screen psychological distress. It is easy to administer and
takes up little of the time of busy clinics.1 The use of
lengthier measures such as HADS will help detect
depression and anxiety.20 Various treatment options are
available, such as self-help groups, support groups, psychotherapy and psychopharmacology. Psychotherapy
can help patients accept the diagnosis of cancer; sort out
treatment options; overcome fear, depression, or denial
and enhance the patient’s ability to cope with cancer
treatment.26
CONCLUSION
In our study, the prevalence of distress was high in
cancer patients receiving chemotherapy. Distress was
found to be associated with practical, familial and
emotional problems, as well as with some physical
symptoms that were either common side-effects of chemotherapy or associated with disease progression.
Regular counseling sessions may help alleviate some
family and emotional problems experienced by these
patients. Oncologists and chemotherapy nurses need to
Asia–Pac J Clin Oncol 2007; 3: 219–223
Distress in cancer patients
be more attentive to signs and symptoms related to the
side-effects of treatment or disease process, and offer
as much supportive therapy as appropriate. Formal
psycho–oncology services should be established to
enable those involved in the care of cancer patients to
work more closely with mental health teams to optimize
the management of these patients.
ACKNOWLEDGMENTS
We would like to thank the staff of the Oncology Clinic,
University Malaya Medical Center for their cooperation
and for allowing us to interview their patients.
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© 2007 The Authors
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