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106 Seminars in Oncology Nursing, Vol 23, No 2 (May), 2007: pp 106 –112

OBJECTIVES:

CLINICAL
To review the principles of symptom
cluster assessment, choosing appro-
priate symptom measures, and meth-
ods to identify symptom clusters.

DATA SOURCES:
Review articles, research articles, and
specialty texts.
ASSESSMENT OF
CONCLUSION:
Identification of symptom clusters is
SYMPTOM CLUSTERS
clinically challenging and includes the
use of reliable symptom assessment
tools and clinical judgment. Evidence
to guide assessment of symptom clus-
ters is based on limited clinical re- CHERYL LACASSE AND SUSAN L. BECK
search and expert practice. Additional
research is needed to guide the accu-
rate assessment of symptom clusters
and the patient’s symptom experience.

IMPLICATIONS
PRACTICE:
FOR NURSING E FFECTIVE symptom management in cancer care can
significantly improve health-related quality of life. Clin-
ical management of symptoms is based on the clinician’s
thorough assessment of symptoms and their understanding of the
multiple dimensions of cancer-related, treatment-related, and
Comprehensive assessment of symp-
tom clusters in individuals with can- non-cancer–related symptoms. These symptoms often occur in
cer will lead to tailored, comprehen- dyads or clusters of three or more, which present challenges for
sive symptom management strategies assessment and subsequent treatment. The occurrence of multiple
that may have a profound impact on symptoms has long been identified and treated by cancer care
cancer-related quality of life. clinicians, yet this clinical phenomenon of a symptom cluster is
just beginning to be systematically described and analyzed in the
KEY WORDS: health care literature. This article explores the various challenges
Symptom cluster assessment, co-
to symptom cluster assessment and considers approaches using a
occurring symptoms, multiple
symptom evaluation, symptom variety of measurement tools and methodologies.
assessment model
CONCEPTS IN SYMPTOM CLUSTER ASSESSMENT

The clinical assessment of symptom clusters presents several


Cheryl Lacasse, RN, MS, OCN®: Doctoral challenges, beginning with a clear understanding of what consti-
candidate, College of Nursing, University of
Utah, Salt Lake City, UT. Susan L. Beck, PhD,
tutes a symptom cluster. A symptom cluster includes two or more
APRN, AOCN®, FAAN: Associate Dean for Ac- acute or chronic symptoms that are related and co-occur with
ademic Programs and Professor, College of moderate to severe intensity and distress. These symptoms are
Nursing, University of Utah, Salt Lake City,
UT, and Clinical Associate Professor, College
often part of a group of systemic symptoms such as fatigue or
of Nursing, University of Arizona, Tucson, AZ. depression and/or symptoms specific to a disease process or treat-
Cheryl Lacasse is supported in part by the ment.
following grants: National Cancer Institute
Training Grant (R25 CA093831), American
There may be variability in the extent to which symptoms that
Cancer Society Doctoral Scholarship in Cancer co-occur are related. Some symptom clusters have the same eti-
Nursing (DSCN-03-200-01-SCN), and John A. ology, for example cellular destruction. Others may influence one
Hartford Building Academic Geriatric Nursing
Capacity Predoctoral Scholarship (04-115).
another, for example pain may disturb sleep which may result in
Address correspondence to Cheryl fatigue.1 There also may be two symptoms that are moderate or
Lacasse, RN, MS, OCN®, 9040 E Seneca severe in intensity that may be weakly related to other symptoms;
St, Tucson, AZ 85715; e-mail: clacasse@
nursing.arizona.edu
it is unknown whether this constitutes a symptom cluster.2 In
addition, the concept of symptom groupings specific to cancer
diagnosis has raised the question of the significance of symptoms
© 2007 Elsevier Inc. All rights reserved. being present without interrelationships indicating a symptom
0749-2081/07/2302-$30.00/0 cluster.2 For example, women with breast cancer may have pain
doi:10.1016/j.soncn.2007.01.007
related to surgery and hair loss related to chemotherapy. Another
CLINICAL ASSESSMENT OF SYMPTOM CLUSTERS 107

concept that increases the complexity of symptom measures of multiple symptoms. The first ap-
clusters is the occurrence of systemic symptoms proach to screening may be a checklist or as-
and localized symptoms that may be disease-spe- sessment guide in which patients indicate in a
cific or treatment-specific, creating a cluster that “yes/no” format whether they are experiencing
is specific for a target population. For example, a specific symptom. This approach allows for
men with prostate cancer receiving radiation ther- in-depth assessment in areas that may be prob-
apy and hormonal therapy may experience fatigue lematic. The second step is to assess intensity
and hot flashes (systemic) as well as dysuria and and/or distress using a systematic approach.
diarrhea (localized). In addition, cancer disease- The most widely used general scale is the 0 to 10
specific symptom clusters may overlap with clus- numeric scale for rating symptoms, where 0
ters for specific co-morbidities, which may create indicates no symptom presence and 10 repre-
a challenge in the assessment of symptoms that
sents the worst possible symptom experience.6
have multiple and potentially overlapping causes.
Clinicians have adapted this scale from the pain
Thus, the assessment of symptom clusters must
assessment literature and extended its use to
extend beyond just occurrence and must be con-
many cancer-related symptoms such as fatigue,
sidered within the context of disease, treatment,
sleep quality, nausea, and general feeling of
and co-morbid conditions.
well-being. These methods of assessment of in-
dividual symptoms are useful as a quick bedside,
APPROACHES TO GUIDE SYMPTOM outpatient, or home care assessment approach
ASSESSMENT with which many health care professionals and
individuals are familiar. The approach also al-
The assessment of cancer-related symptoms is an lows for repeated assessments to evaluate
integral part of cancer care throughout the disease change over time. However, this method of as-
trajectory. Multiple measurement approaches sessment is best used for screening and assess-
ranging from simple single-question assessments ing for symptom co-occurrence and may be too
to complex multi-symptom measures can be used simplistic to systematically assess symptom
to determine symptom presence, intensity, dis- clusters in depth.
tress, and interference with life activities. Symp-
toms are subjective in nature and it is commonly Traditional Clinical Assessment of Individual
understood that patient self-report is the most
Co-occurring Symptoms
accurate approach to symptom assessment. Self-
report also allows for consideration of the multiple Another frequently used method of symptom as-
dimensions of an individual’s symptom percep- sessment in general medical-surgical nursing is
tion.3–5 Clinical assessment, the first step in the the assessment of each symptom complaint by
nursing process, is critical to the development and using the pneumonic PQRST.7 This model evalu-
implementation of comprehensive cancer symp- ates each symptom by describing provoking fac-
tom management. tors (P), quality (Q), region or site of symptom
There are many approaches to symptom evalu- (R), severity or intensity of symptom (S), and
ation that can be applied to the assessment of
timing of onset or cause, peak, and duration of the
symptom clusters. These models range from sim-
symptom (T). This type of assessment is com-
ple screening methods, to multi-symptom assess-
monly used to explore acute symptoms such as
ment tools, to sophisticated use of technology to
pain, but may be applied to a wide variety of
record self-report of symptoms that in turn pro-
symptoms. This method provides a more in-depth
vides clinicians with valuable information in a
timely manner for efficient treatment. These ap- assessment of individual symptoms that may be
proaches are summarized in Table 1 and each is co-occurring (and verified by a screening ques-
described below. tion) but does not specifically address the interre-
lationship of symptoms that are often found in a
symptom cluster. The assessment of provoking
Screening for Symptom Clusters
factors may elicit information about related symp-
One practical issue in assessing symptom clus- toms: for example, pain may provoke an episode
ters is the consistent use of valid and reliable of nausea.
108 C. LACASSE AND S.L. BECK

TABLE 1.
Approaches to Symptom Assessment

Approach Description: Features, Use, and Limitations

Screening and assessment of Features: Ask whether patient is experiencing a symptom. Then rate each
intensity symptom on scale with 0 ⫽ no symptom and 10 ⫽ worst possible symptom
Use: screening for multiple symptoms
Limitations: does not allow for indepth assessment of symptoms.

Traditional symptom Features: PQRST Model (provoking factors, quality, region of symptom, severity,
assessment timing of onset, peak, and duration for each symptom
Use: gaining deeper perspective on individual symptoms
Limitations: Focus is on individual symptoms
Multi-symptom assessment Features: This method utilizes a comprehensive, reliable symptom assessment tool
tools to measure symptom presence, intensity, and bother of many diverse symptoms
Use: These tools are helpful in assessing the overall symptom experience and
emerging symptom patterns.
Limitations: These tools are not specific to the assessment of symptom clusters
and may be considered as a global symptom measure which requires complex
scoring. These tools are suitable to use in symptom research but are generally
not practical for frequent clinical use.

Focused assessment of Features: Symptom assessment based upon broad clinical knowledge of disease
identified clusters and treatment
Use: Tailored assessment to known or expected symptoms
Limitations: Other symptoms co-occurring with specific symptoms may be missed

Disease or treatment specific Features: Using specific symptom assessment tools based upon assessment of
multi-symptom assessment specific expected cancer-related or treatment-related symptoms.
Use: Measurement of known or suspected symptom clusters.
Limitations: Only specific symptoms will be assessed and treated.

Sentinel symptoms Features: Assessment focuses on the most problematic symptom or a trigger
symptom that may lead to development of other related symptoms.
Use: The presence of sentinel symptoms may lead to specific treatment for a
defined symptom cluster or a prioritized approach to assessment.
Limitations: Patients may not notice specific times when specific symptoms began
or are exacerbated; confounding symptoms such as those characteristic of
specific co-morbidities may make symptoms hard to assess.

Multidisciplinary Model Features: This model includes the collaboration of several disciplines (each
contributing their unique perspective) to determine a specific symptom cluster
Use: Complex patient populations may require a team approach to determine
specific manifestations of cancer and its treatments, co-morbidities, and other
complex life circumstances.
Limitations: The team approach to assessment may lead to multiple varying results
and opinions on symptom cluster.

Electronic assessment Features: Individuals log in their assessment into a computer database linked to
their medical record which correlates specific symptoms with each other and the
patient’s unique history
Use: Provides database entry directly into the individual’s medical record which
gives clinicians timely information on which to base treatment
Limitations: Patients may not be comfortable interacting with computers or
personal digital assistants (PDAs) and this might prevent accurate, timely
assessment of symptom clusters.
CLINICAL ASSESSMENT OF SYMPTOM CLUSTERS 109

TABLE 2.
General Symptom Measurement Scales Used in Cancer Care

Scale Name Description

Edmonton Symptom Type: Self report on nine items


Assessment Scale (ESAS)8-10 Scale: VAS (0 – 100 mm); numeric rating scale may be substituted
Dimensions: frequency, severity, and distress
Time frame: current symptom levels
Population used with: palliative care; medical oncology inpatients/outpatients
Estimated time for completion: approximately 8 minutes

M.D. Anderson Symptom Type: Self report on 15 core items


Inventory (MDASI)11 Scale: VAS (0 – 10)
Dimensions: symptom presence, severity, and interference
Time Frame: within past 24 hours
Population used with: medical oncology outpatients
Estimated time for completion: approximately 8 minutes

Memorial Symptom Type: Self report on 32 items


Assessment Scale-SF Scale: 5-point Likert scale; three subscales: high and low prevalence symptoms and
(MSAS-SF)12-14 psychological symptoms; overall Global Distress Index
Dimensions: symptom presence, frequency, and severity
Time Frame: current symptom levels
Population used with: clinical trials, medical oncology inpatients/outpatients
Estimated time for completion: approximately 10 minutes

Rotterdam Symptom Checklist Type: Self report on 31 items


(RSCL)9,15 Scale: 4-point Likert scale with verbal descriptors
Dimensions: presence and bother
Time frame: current symptom levels
Population used with: clinical trials; medical oncology inpatients/outpatients on
chemotherapy
Estimated time for completion: approximately 8 minutes

Symptom Distress Scale Self report on 13 items


(SDS)16-18 Scale: 5-point Likert scale; VAS (0 – 100mm) in revised versions
Dimensions: frequency, intensity and distress
Time Frame: current symptom levels
Population used with: multiple types of cancers
Estimated time for completion: approximately 3 minutes

Abbreviation: VAS, Visual Analogue Scale.

Multi-symptom Assessment Tools of energy), nausea, depression (feeling sad), lack


Several self-report, multi-symptom assessment of appetite, and dyspnea. These tools have strong
tools are reported in the literature as being useful validity and reliability in measuring cancer-re-
for assessing cancer-related symptoms and symp- lated symptoms and are reported to take no longer
tom clusters. These tools include the Edmonton than 10 minutes to complete. The most common
Symptom Assessment Scale,8 –10 M.D. Anderson tools include visual analogue, numeric, or verbal
Symptom Inventory,11 Memorial Symptom As- descriptor scales. Limitations of these tools may
sessment Scale,12–14 Rotterdam Symptom Check- be that they require a basic level of competent
list,9,15 and the Symptom Distress Scale,16 –18 and cognitive functioning and they are not well-suited
are summarized in Table 2. Although these tools for accurate completion by a proxy such as a
assess a wide range of symptoms, the symptoms health care provider or significant other.19 Al-
most common among all tools include: pain, fa- though these tools are useful in assessing multiple
tigue (or related descriptors such as tired or lack symptoms, they may be difficult to use with indi-
110 C. LACASSE AND S.L. BECK

viduals who have difficulty concentrating, limited Multi-Symptom Assessment Approaches


or altered cognition, and/or severe symptoms that Specific to Cancer Diagnosis or Treatment
affect their ability to participate in a full symptom
Symptom clusters may be disease-specific, treat-
assessment via self-report.
ment-specific, or both, and may be best assessed
using multiple disease-specific measures (see arti-
Focused Assessment Based on Commonly cle by Honea and Brant elsewhere in this issue). A
Reported Symptoms longitudinal, descriptive study of 19 women with
ovarian cancer found a primary symptom cluster
There are several cancer-related symptom clus- of bloating, vague abdominal pain, indigestion,
ters that have been identified in the literature in fatigue, painful spots and lumps in the abdomen,
the past several years. The study of specific symp- and urinary problems and a secondary cluster of
tom clusters has been focused on commonly co- 11 symptoms.24 Symptoms were also examined by
occurring symptoms in several oncology popula- stages of disease development, and results suggest
tions, and there is increasing evidence to support a dominant symptom cluster of gastrointestinal
a cluster of pain-sleep disturbance-fatigue (plus or symptoms (bloating and indigestion), focused ab-
minus depression). This knowledge indicates that dominal pain, and fatigue in early stage ovarian
a symptom cluster assessment approach focused cancer patients. Later stage ovarian cancer symp-
on these four symptoms and how they may relate toms were more systemic in nature, including
is needed.20 In women with breast cancer who fluid accumulation in abdomen and chest, diffuse
were between adjuvant chemotherapy treatments pain, and gastrointestinal symptoms. This study
and bone marrow transplant or peripheral stem suggests that in populations with multiple com-
cell transplant, fatigue, pain, and depression were plex symptoms, such as ovarian cancer patients,
found to be correlated with each other and overall there may be two symptom clusters that co-occur:
well-being.20 The symptoms of pain, fatigue, and the primary cluster consisting of the higher fre-
sleep disturbances in cancer patients receiving quency symptoms and the secondary cluster con-
outpatient radiation therapy for bone metasta- sisting of lower frequency symptoms. In addition,
ses21 were related; lower fatigue levels in the this study suggests that a focused assessment of
morning, and sleep disturbances were affected by symptoms occurring in ovarian cancer patients
radiation treatment and functional status. In can- may be influenced by the stage of disease, and the
cer outpatients receiving chemotherapy, pain and types of symptoms that occur in ovarian cancer
fatigue were strong predictors of change in func- may be different from the usual lists of common
tional status and fatigue emerged as the dominant symptoms included in most symptom distress
scales. Disease-specific tools that include these
symptom in the cluster.22 Using a mediation
specific problems (eg, bloating) are recom-
model, sleep disturbance was found to partially
mended.
account for the effect of pain on fatigue.1
Another example emerges from an exploratory
The measurement of a commonly occurring
study of breast cancer patients in various stages of
symptom cluster might use existing symptom-spe-
disease and treatment. Investigators found a com-
cific tools (eg, the Brief Pain Inventory and General mon cluster of fatigue (lack of energy and physical
Fatigue Scale) or a subset of items from existing weakness), loss of concentration, and mood dis-
multi-symptom tools. Most symptom measurement turbance (anxiety, nervousness, depression).25
tools are self-report scales and ask patients to de- This cluster was assessed using multiple symp-
scribe several dimensions of their current symp- tom-related measures ranging from a general
toms, such as the frequency, severity, and distress of symptom checklist to a focused assessment of
each symptom. Symptom assessment scales range menopausal quality of life. This study illustrates
from the Edmonton Symptom Assessment Scale,8 –10 the assessment of common systemic symptoms
which has nine items, to the Memorial Symptom throughout stages of disease using a general symp-
Assessment Scale–Short Form, which lists 32 tom measure, as well as a tool focused on co-
items.12–14 Yet other scales have been developed to morbid symptoms related to menopause.
specifically assess symptoms that are disease- and/or Assessment in men with prostate cancer may
treatment-related, such as the Prostate Symptom also require more specific tools that include uri-
Self-Report.23 nary, bowel, and sexual symptoms. These symp-
CLINICAL ASSESSMENT OF SYMPTOM CLUSTERS 111

toms may cluster because of the effects of radia- distress. For example, a nurse, physician, and
tion therapy. There are several tools that are social worker may work together to assess a com-
specific to this population and are frequently used plex older adult with multiple co-morbidities (eg,
in clinical trials that include localized symptoms cancer, arthritis, coronary artery disease, and di-
related to the disease and/or treatment. For exam- abetes), symptoms of pain, sleep disturbance and
ple, The Prostate Symptom Self-Report23 is an depression, and decreased physical and cognitive
11-item symptom questionnaire that assesses the functioning. This method may enhance the clini-
frequency, severity, and amount of bother of uri- cian’s understanding of the meaning and context
nary, bowel, and sexual symptoms experienced of an individual’s symptoms and their overall in-
during the past month. fluence on the cancer experience.
Electronic assessment methods use computer
Other Assessment Models technology to assess the multiple dimensions of
many symptoms, analyze the symptom assessment
Other models of symptom cluster assessment in- data using statistical methods, and generate clini-
clude the determination of a sentinel symptom. A cian-friendly reports based on the patient’s current
sentinel symptom can be described in two ways. symptom experience as compared with previous
In one approach, the patient is asked an open- symptom assessments. This type of symptom as-
ended question such as “What problems or symp- sessment has been evaluated in outpatient clinic
toms have been troubling you the most this past settings and found to be a feasible method of assess-
week?” A drill-down assessment then focuses on ing pain and fatigue,26 multiple symptoms,27,28 and
symptom distress, intensity, timing of onset and quality of life.27,28 From the patient perspective, this
duration, and the quality or character of this method of symptom assessment may enhance com-
symptom or group of symptoms. In a second ap- munication between patients and health care pro-
proach, a sentinel symptom may be more of a viders and trigger automatic alerts for multidisci-
trigger, for example pain which then causes sleep plinary team involvement in various aspects of care.
disturbance or depression. In this case, assess- The use of this type of system to evaluate symptoms
ment may ascertain specifically whether pain is requires strong technology resources in the clinical
leading to any other problems. setting and may prove to enhance the efficiency and
Most standardized methods of symptom assess- accuracy of symptom assessment and symptom
ment are sensitive to the perception of the indi- cluster identification. Algorithms could be devel-
vidual symptoms within a specified time frame but oped that indicate when a specific symptom cluster
not groups of symptoms. Further, most patients exists.
are not aware of the nuances of chronic symptom
development until symptoms increase in their
level of “bother” and begin to interfere with inde-
CONCLUSION
pendence and overall quality of life. Typical symp-
tom assessments focus on one symptom at a time. Clinical assessment of symptom clusters in cancer
Assessing co-occurring symptoms may assist cli- care is a rich area for further development and
nicians to discover symptom clusters that are not exploration. Consistent use of multidimensional
readily recognized by the patient. For example, a symptom assessment tools is a significant first
thorough pain assessment often includes ques- step in comprehensive symptom assessment of
tions about sleep disturbances, fatigue, physical presence, frequency, intensity, and distress of in-
functioning, and coping. This type of multi-symp- dividual symptoms. When deciding the best ap-
tom assessment may increase a patient’s aware- proach to assessing symptom clusters in the clin-
ness of co-occurring acute and chronic symptoms. ical practice the following issues should be
In addition, treatment-related symptoms may considered: the characteristics of the clinical set-
need to be assessed over longer time intervals ting including patient load; the type and pace of
such as 4 to 6 weeks to identify cyclic symptom care delivered; nursing role within the cancer care
clusters that coincide with cancer treatments. team; the clinical skill mix, including the use of
Another model of assessment involves a multi- nursing and other health care personnel to deliver
disciplinary team approach that may enhance the care; and the resources available to patients and
assessment of multiple dimensions of a symptom health care providers. Integration of symptom as-
cluster beyond symptom presence, intensity, and sessment into electronic medical records can pro-
112 C. LACASSE AND S.L. BECK

vide systematic ways to assess the multiple di- may need to include questions about symptom per-
mensions of the symptom experience and create ception that will assist in the identification of signif-
databases for future knowledge generation. icant symptom dyads and/or clusters that are spe-
In addition, further development of self-report cific to disease processes, treatments, co-existing
measures of symptom clusters is needed. This co-morbidities, or a combination of these. Expand-
should include consistent scaling, multiple dimen- ing the knowledge base for the identification of can-
sions such as presence, intensity, quality, and dis- cer symptom clusters is a necessary first step for the
tress within a consistent time frame and clinical development of tailored interventions for integrated
context without placing an excessive measurement symptom clusters instead of multiple, individual
burden on the patient.19 In addition, self-report tools symptoms.

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