Cancer Symptom Assessment Instruments: A Systematic Review

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2006

JOURNAL OF CLINICAL ONCOLOGY

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Cancer Symptom Assessment Instruments: A Systematic Review Jordanka Kirkova, Mellar P. Davis, Declan Walsh, Eoin Tiernan, Norma O’Leary, Susan B. LeGrand, Ruth L. Lagman, and K. Mitchell Russell From the Harry R. Horvitz Center for Palliative Medicine, the Cleveland Clinic Foundation, Cleveland, OH; and the St Vincent’s University Hospital, Dublin, Ireland. Submitted May 25, 2005; accepted January 11, 2006. Supported by a Mount Sinai Health Care Foundation Research Fellowship in End of Life Care (J.K.). Presented at the 17th Annual Symposium of the Multinational Association of Supportive Care in Cancer, June 30July 2, 2005, Geneva, Switzerland. Authors’ disclosures of potential conflicts of interest and author contributions are found at the end of this article. Address reprint requests to Declan Walsh, MSc, Cleveland Clinic Foundation, 9500 Euclid Ave, M76, Cleveland OH 44195; e-mail: [email protected]. © 2006 by American Society of Clinical Oncology 0732-183X/06/2409-1459/$20.00 DOI: 10.1200/JCO.2005.02.8332

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Purpose A variety of assessment instruments have been created to identify cancer symptoms. We reviewed systematically cancer symptom assessment instruments published in English. Methods A systematic search of the MEDLINE database, Cochrane Library, Cumulative Index of Nursing and Allied Health Literature (CINAHL), and EMBASE was performed. Non–peer-reviewed articles were identified through BIOSIS. Articles were accessed through the related article links in PubMed and references were searched by hand. Studies were included if the instrument had symptom assessment as the primary outcome. Quality-of-life instruments were excluded. Results We identified 21 instruments; some had undergone modification or validation. An additional 28 studies examined symptom prevalence and interrelations; many involved symptom checklists. Studies varied in design, patient characteristics, symptoms, and outcome. Meta-analysis was not possible due to heterogeneity in design, study outcomes, and validation. Seventy-six articles and two conference abstracts (derived from MEDLINE, Cochrane, CINAHL, EMBASE, BIOSIS, related articles link in PubMed, and search by hand) met inclusion/exclusion criteria. The electronic search (without related links) yielded only 26% of those articles and conference abstracts that met inclusion criteria. Searches by hand of related articles identified 59% of studies. Conclusion Twenty-one instruments were identified as appropriate for clinical use. The instruments vary in symptom content and extent of psychometric validation. Both comprehensive and shorter instruments have been developed, and some instruments are intended for specific symptom assessment or symptoms related to treatment. There is no ideal instrument, and the wide variety of instruments reflects the different settings for symptom assessment. Additional research is necessary. J Clin Oncol 24:1459-1473. © 2006 by American Society of Clinical Oncology

INTRODUCTION

Symptom assessment is important because symptoms directly influence patient distress, quality of life (QOL), and survival. Better assessment is a prelude to successful symptom treatment. Symptom assessment is challenging because of the evolving course of cancer, and complex interrelationship between stage and symptoms. Symptoms are disease related, treatment related, related to concurrent comorbid illnesses, or a combination of all three.1 Symptoms such as anorexia, anxiety, depression, dyspnea, fatigue, and pain lead to significant patient distress. Pain is well studied and characterized, and a better understanding of other symptoms is needed. Early cancer is associated with considerable symptomatology.2 Symptom burden, which includes symptoms

and their interference with life, increases with cancer stage, and may subjectively reflect tumor burden.3,4 Patients with advanced cancer have multiple symptoms; most patients experience a median of 13 (range, two to 30) symptoms.5 Symptom distress (either as a sole dimension or as a summated symptom severity/distress score),6-9 or multiple symptom dimensions (ie, duration, frequency, severity, and distress10-12) may account for symptom burden. Symptom burden decreases QOL.13 Symptom assessment is the primary purpose of symptom instruments. QOL is a multidimensional construct, with specific domains, such as physical, emotional, and social aspects.14,15 Symptoms contribute to, but do not determine QOL. Conversely, QOL instruments are not intended to be symptom instruments, although many do contain symptom items.16,17 1459

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Symptom assessment and management during the patient’s disease course is crucial for treatment decisions and outcomes. This is especially important because most antitumor treatments have a limited capability to reduce symptom burden and prolong survival, and may cause considerable toxicity. Symptom assessment instruments should be comprehensive, accurate, and reliable. This systematic review evaluated currently available symptom assessment instruments for adult cancer patients. A secondary objective was to compare instruments by psychometric criteria. METHODS A systematic electronic search was performed using OVID MED (Ovid Technologies Inc, New York, NY), PubMed, Cumulative Index of Nursing and Allied Health Literature (CINAHL; Cinahl Information Systems, Glendale, CA), Cochrane Review, and EMBASE (Elsevier Publishers, Amsterdam, the Netherlands). MEDLINE and CINAHL were searched from 1966 to 2004, EMBASE was searched from 1990 to 2004, and non–peer-reviewed manuscripts were searched through BIOSIS from 1980 to 2004. A search of references was performed by hand. The search was limited to articles published in English and regarding adult cancer. Inclusion criteria were development and/or validation of instruments designed to measure multiple (⬎ one) symptoms; and symptom prevalence/incidence as the primary purpose, using validated instruments or nonvalidated symptom checklists. Exclusion criteria were QOL instruments (despite some with symptom assessment scales); single-symptom instruments; single cancer site instruments (ie, site-specific instruments); and instruments designed to measure tumor response rather than symptoms. The review was performed by two independent reviewers (E.T. and M.D.) using the same keywords associated with symptom assessment from Medical Subject Heading (MeSH; in Medical Literature Analysis and Retrieval System) singly and in combination. The search methodology is listed in the Appendix. Psychometric Evaluation Instruments were evaluated for the number of symptoms, timeframe of assessment, scale, method, reliability, and validity. Reliability is how consistently and reproducibly the instrument measures a symptom. Several types of reliability are measured.18 Internal consistency represents correlations between scale items. A frequently used test for internal consistency is Cronbach’s ␣ coefficient. Additional reliability measures are inter-rater, intrarater or testretest. Coefficients (measured by Cronbach’s ␣, Pearson’s r correlation, ␬ coefficients, intraclass coefficients, or Spearman’s ␳) should exceed 0.5, and preferably 0.7 for reliability (for reliability correlation coefficients, 0 ⫽ worst and 1 ⫽ best possible).18,19 Validity is the degree to which instruments measure what they are intended to measure. Validity involves face, content, criterion (concurrent and predictive), and construct (discriminative, convergent, discriminant [divergent], and factor structure analysis) dimensions.20,21 Correlation validity coefficients range between 0.4 and 0.8.18 Information on sensitivity and specificity was collected. Sensitivity refers to a scale’s capacity to

correctly identify a symptom; specificity is the ability to exclude a symptom that is not present.21 There are no universal criteria to grade instruments.22 We developed criteria for an ideal symptom assessment instrument (Table 1). Instruments were then ranked by a consensus process among the authors based on these criteria, including psychometric properties and practicality.

RESULTS

We encountered difficulties in identifying cancer symptom assessment instruments through a standard MEDLINE search. Key words in the MeSH identified 26% of published assessment instruments. Related articles link in PubMed and searches by hand found most studies. Searches by hand were most valuable, as previously recognized by Hearn et al.23 Symptom instruments were not easily indexed by MeSH words because they have various purposes, which are difficult to classify within a single index. Symptom assessment may be only one outcome. Certain instruments are used in both cancer and noncancer settings, and are not indexed under cancer. This contributed to difficulties in identifying instruments that met inclusion/exclusion criteria. Seventy-six articles and two conference abstracts met inclusion/ exclusion criteria. MEDLINE (OVID and PubMed) yielded 18 articles, CINAHL and BIOSIS previews yielded two; the Cochrane Library and EMBASE did not identify additional articles. The electronic search engines—without the related-articles link in PubMed—identified 26% (n ⫽ 20); the related-articles link in PubMed identified 15% (n ⫽ 12), and a reference search by hand identified 59% (n ⫽ 46) of articles. The decision to include or exclude an article was difficult and necessitated second reviews and decisions by consensus. Some prevalence studies were excluded because their primary outcomes involved symptom interactions, clusters, or symptoms related to sex, age, and prognosis.11,16,24-31 Studies could be categorized as studies that developed or modified symptom instruments as a primary outcome; prevalence/incidence studies that included symptom severity and burden; or studies using QOL or outcome instruments to measure treatment response. Most studies (n ⫽ 50 articles) in this review focused on instrument development or validation. Symptom prevalence, severity, and burden were reported. Sixty-nine of 78 reports were prospective (cross-sectional and longitudinal studies; one was a cross-over design, and three were randomized, controlled studies). Forty-eight articles and two abstracts described development, modification, and/or validation of instruments. Twenty-eight articles evaluated symptom

Table 1. Characteristics of an Ideal Symptom Assessment Instrument Parameters Contents Measuring scale Validity

Completion process Information

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Goals Comprehensively captures symptom prevalence, severity and distress; assesses symptom clusters (eg, anorexiacachexia; pain-fatigue) Easy to understand; easy to complete; provides clinical utility; suitable for statistical analysis; captures changes over time Precise: reliable, consistent with good reproducibility; stable and repeatable among raters and over time Accurate: stable structure measuring what is intended; reasonable correlation to similar valid tools; discriminates between different patient groups and symptoms; captures change in symptoms over time Minimal burden for patients and staff Sufficient for decision making; facilitates initial and ongoing symptom control

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prevalence/incidence, severity, and/or distress as primary end points. There were 21 separate instruments with more than one symptom. The Index of Nausea and Vomiting,32 Morrow Assessment of Nausea and Emesis (MANE),33 and Hospital Anxiety and Depression Scale (HADS),34-37 assessed two symptoms and met inclusion criteria. Instruments and validation are listed in Tables 2 and 3, based on symptom numbers. Heterogeneity in design, validation process, and purpose were such that other comparisons among instruments were impossible. Of 21 instruments, 16 were designed for a general cancer population or persons receiving anticancer treatments, and the rest assessed anticancer–treatment-related effects. Eighteen instruments assessed both physical and psychological symptoms.7 The Physical Symptom Experience (Symptom Experience Inventory) was not included because the content was not described in full.65-68 The Symptom Experience Scale (possibly a shortened version of the Physical Symptom Experience) was included.60 The HADS38 was developed for psychiatric patients but validated in cancer.34-37 The Profile of Mood States (POMS)69 was developed to evaluate mood in noncancer patients, and was validated in cancer patients.42,70 The Support Team Assessment Schedule,11 assesses outcomes in palliative medicine but was modified for symptom assessment.57 Some instruments have questions about items other than symptoms, such as activity, symptom interference with daily life, family anxiety, and depression. These instruments were included because the primary purpose was symptom assessment. Five assessed treatment-related adverse effects and were included because we did not exclude treatment-related symptoms.32,33,50,53,56 Content Instruments differed in number and type of symptoms. Pain, fatigue, and anorexia were universally included, except in instruments with less than five symptoms (Table 2). Numerical and verbal scales were equally represented. Visual analog scales were used less frequently. Scales were interchanged with instrument modification.43,71,72 Some instruments were modified for completeness or to improve applicability. Instruments that have been modified (changes in instrument structure or method, or validation in different languages) are listed in Table 4. Table 5 compares multisymptom (⬎ five) instruments selected from Table 3. Instruments that do not involve symptoms (POMS),69,70 or assessed treatment-specific symptoms (Oncology Treatment Toxicity Assessment Tool [OTTAT]50 and The Worthing Chemotherapy Questionnaire56) were not included in Table 5. Table 6 ranks selected multisymptom (⬎ five) assessment instruments compared with an ideal instrument (Table 1). Symptom Dimensions Symptom prevalence and severity were the main determinants of symptom burden. Frequency and duration were less frequently reported, except in instruments for treatment toxicity.32,33,56 Thirteen instruments assessed distress by different means (“being distressed,”3 “extent of bother or trouble to the patient,”7,53 “summated or mean symptom distress score,”8,42 “global distress index,”10 “interference with normal activities/life,”3,41,61 “time having the symptom at its worst,”3,33 and so on). Timeframe Timeframes varied from “at present time” to “weeks.”6,8,56,60 www.jco.org

Methodology Seventeen instruments were designed for patient self-assessment or assisted self-assessment by a caregiver. The Reduced Expanded Support Team Assessment Schedule57 was observer rated; the Pain and Symptom Assessment Record59 was an observer-conducted interview. Interviewer assessment was reported for the Symptom Distress Scale (SDS),6 and recommended for the M.D. Anderson Symptom Inventory (MDASI)3 and the Edmonton Symptom Assessment System (ESAS).8 Some (ESAS, Symptom Reporting Tool,41 and Symptom Monitor64) allowed proxy assessment. The ESAS and the Memorial Symptom Assessment Scale (MSAS) have been tested extensively for proxy assessment; however, the reliability of this needs additional evaluation.12,86,87,89,92 Symptom instruments have diverse uses. Some are used for QOL (the revised Rotterdam Symptom Checklist79 and SDS75); others assess patient function and interference with daily activities.3 QOL (European Organisation for Research and Treatment in Cancer Quality of Life Questionnaire C30 63) and outcome instruments (Support Team Assessment Schedule,11 Palliative Care Outcome Scale,24 and the Palliative Care Assessment Tool),25 are used for symptom assessment. The Cambridge Palliative Assessment Schedule (CAMPAS-R),61 assesses proxy anxiety and depression from the patient perspective. Practicality Twenty-five studies reported that more than 70% of patients completed the instrument, although completion rates in advanced disease waned.8,44,97,100 Completion by the critically ill was less than 50%88 and the completion rate by those close to death was less than 5%.8 Time to completion was a median of 10 to 15 minutes (range, 1 to 20 minutes). Psychometric Characteristics The Adapted Symptom Distress Scale, ESAS, CAMPAS-R, HADS, MANE, MDASI, MSAS, SDS, OTTAT, and POMS were rigorously validated. Validated instruments had moderate to good psychometric properties judged by the magnitude of the reliability and validity coefficients (range, 0.25 to 0.9). Factor analysis of the MSAS,10 MDASI,3 revised Rotterdam Symptom Checklist, 7 HADS,34-37 and Worthing Chemotherapy Questionnaire,56 confirmed the structural validity of these instruments. Some instruments were validated with consecutive patients.33,44,88,90,96,98 Prevalence Studies Twenty-eight prevalence/incidence (severity and/or symptom burden) studies that met inclusion criteria were of mixed quality.1,60,100-125 Twenty-one were prospective, nine were longitudinal, and one was a randomized, controlled trial. Seven studies included cancer and noncancer patients; one was particular to hospice patients. Eighteen studies assessed consecutive patients. Eight used validated symptom assessment instruments, three were original, and the rest were modified. Only one involved consecutive patients in a prospective design with a modified validated instrument.112 Twentyone studies used nonvalidated symptom checklists containing four to 38 symptoms. Symptoms listed varied, but anorexia, dry mouth, fatigue, lack of energy, pain, shortness of breath, and weight loss were included consistently. The mean number of symptoms per patient ranged from three (⫾ two) to 11 (⫾ six). 1461

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Table 2. Symptom-Targeted Instruments (ⱕ five symptoms) Instrument INV32

Dimensions Two symptoms

Assessment Method Self-assessment

Reliability Internal consistency (Cronbach’s ␣; split halves)

Physical

MANE33

Self-assessment

Test-retest

Physical Frequency

HADS34-37

An objective assessment instrument to measure Pain, Dyspnea and Restlessness39

Pain Numerical Scale; Dyspnea Numerical Scale; CAS40

N ⫽ 500 cancer receiving chemotherapy

Self-assessment or Interview

Internal consistency (Cronbach’s ␣)34,37

Construct (factor analysis)34-37

N ⫽ 2,765 various stage cancer (without psychiatric, with adjustment and with major depressive disorders)

Sensitivity/specificity35-37

Two symptoms Psychological Presence of a case (cutoff scores ⱖ 8 for each subset of items)34,38 Severity Mean score 4-point Likert type Three symptoms

Not reported

Inter-rater (Not reported)

Concurrent (not reported)

No. not reported; terminal home and hospice inpatients

Symptom discomfort Not clear for other dimensions Scale not reported Three symptoms

Self-assessment

Inter-rater

Not reported

N ⫽ 264 advanced cancer and their dyads

Not reported

Not reported

No. not reported; cancer

Physical

The Symptom Reporting Tool41

Content Construct (convergent) Total number of cytostatics taken by patient versus patient nausea versus vomiting response Clinical rating of drug’s emetic potential versus patient nausea-vomiting score Construct (divergent) Questions on MANE v patient self-report on three chemotherapy-induced adverse effects not related to nausea

Severity Duration (hours) Duration of distress (symptom at its worst”) from “during treatment to 24 hours after treatment” Likert type 4 point (frequency), 6 point (severity), 6 point (duration of distress) 14 items

Sample n ⫽ 32 medical oncology patients, 32 family caregivers, and 72 healthy volunteers

Construct (convergent/divergent) ASDS32 Self-report versus nurse’s records for vomiting amount and frequency Construct (discriminative) Criterion Patients v family members

Duration Frequency Distress Amount of vomiting 5-point Likert type Two symptoms

Validity Face

Presence Severity NRS (0–10; pain, dyspnea) 3-point Likert type for constipation with summated score Five symptoms Physical

(Carmine’s ␪)34

Caregiver assessment

Self-assessment Family member assessment

Presence Intensity Frequency Impact on daily activities Aggravating and alleviating factors Drug efficacy NRS (0–10)

Abbreviations: INV, Rhodes Index of Nausea and Vomiting; MANE, Morrow Assessment of Nausea and Emesis; HADS, Hospital Anxiety and Depression Scale; NRS, numeric rating scale; CAS, Constipation Assessment Scale.

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Table 3. Multiple-Symptom (⬎ five symptoms) Assessment Instruments Instrument

Dimensions

Assessment Method

SDS6,42

10 items6

POMS42,43

13 items42 Physical Psychological Function Presence Distress Summated symptom distress score 5-point Likert type with two verbal anchors 65 adjective items

RSCL7

Six mood states Psychological Confusion Total mood disturbance score within a rangelow mood disturbance (32) to high mood disturbance (204) 5-point adjective rating scale 30 items

ESAS8,44,45

Physical Psychological Symptom distress 4-point Likert type 9 items

Self-assessment

“Other”

Assisted assessment

Physical Psychological Well-being Presence Severity Mean distress score VAS (0–100 mm) 32 items

Observer completed

MSAS10

Self-assessment

Reliability Internal consistency (Cronbach’s ␣)6,42

Test-retest42

Self-assessment

Internal consistency (Cronbach’s ␣)42

OTTAT50

Sample N ⫽ 79 ( 53 intervention ⫹ 26 prepilot)6 cancer and noncancer; N ⫽ 121 cancer and noncancer42

Content42 Construct (discriminative)42

Construct (discriminative)42

n ⫽ 121 (56 cancer and noncancer)42; n ⫽ 30 cancer43

Content

N ⫽ 753 (142 medical oncology and 611 medical oncology, disease-free and healthy controls)

Test-retest43

Self-assessment

Internal consistency (Cronbach’s ␣)

Construct (factor analysis)

Internal consistency (Cronbach’s ␣)45

Construct (convergent/divergent)45 KPS46

N ⫽ 135 palliative cancer8,44 N ⫽ 282 medical oncology out-and inpatients45

Test-retest44,45 Construct (discriminative)45 Concurrent STAS44 MSAS45 FACT-G45

Self-assessment

Internal consistency (Cronbach’s ␣)

Physical Psychological “Other” Global Distress Index Presence Frequency, Severity Distress 4- and 5-point Likert type 37 items

Validity Face6

Content

N ⫽ 246 cancer inand outpatients

Construct (factor analysis) Construct (convergent/divergent) KPS46 FLIC47 Revised Rand Mental Health Inventory48 Mood VAS49

Self-assessment

Internal consistency (Cronbach’s ␣)

Physical Psychological Function Frequency, Severity Summated score 5-point Likert type

Content

N ⫽ 91 heterogeneous cancer (medical oncology, radiation oncology and bone marrow transplantation)

Concurrent QLI51 QLI-revised52

(continued on following page)

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Table 3. Multiple-Symptom (⬎ five symptoms) Assessment Instruments (continued) Instrument A Computerized Symptom Assessment Instrument53

Dimensions 20 core items

Assessment Method Self-assessment

Reliability Not reported

Worthing Chemotherapy Questionnaire56

Sample N ⫽ 110 cancer undergoing radiotherapy

Construct (convergent/divergent) LASA Pain54 HADS38 McGill PPI55

“Other” Additional specific set for head and neck, breast, lung cancer Physical Psychological Function Presence Symptom distress LASA-type bar scale (1–15) 75 items

Validity Content

Self-assessment

Test-retest

Content

N ⫽ 147 medical oncology

Reduced E-STAS57

Physical Psychological Presence Severity Duration (nausea) Frequency (vomiting) 5-point Likert type 12 items

Observer rated

Not reported

Not reported

N ⫽ 352 palliative cancer and noncancer

MDASI3

Physical Psychological Family anxiety Presence Severity Distress Duration Impact on function, activities E-STAS distress score 5-point Likert type 19 items

Self-assessment

Internal consistency (Cronbach’s ␣)

Content

N ⫽ 660 cancer out- and inpatients (527 cancer outpatients, 30 inpatient blood and bone marrow transplant; 113 cancer outpatients as a crossvalidation sample)

Physical

PSAR59

Psychological Function Presence Severity Interference with life NRS (0–10) 9 items

Construct (factor analysis) Construct (discriminative)

Interview: touch-tone telephone; voice mail; electronic (e-mail)

Construct (factor analysis)

Construct (convergent/divergent ECOG116 Construct (discriminative)

Nurses performed interview

Not reported

Content

No. not reported; palliative cancer and noncancer (55 chart audits: 10% of the patients); 205 nurses

“Other” Physical Cognition Presence Severity for pain, dyspnea, nausea, sedation Type of pain Quality of pain–verbal descriptors location of pain–body chart Pain relief Actions taken NRS (0–10) ( pain, nausea, dyspnea) NRS (0–5) (drowsiness) (continued on following page)

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Table 3. Multiple-Symptom (⬎ five symptoms) Assessment Instruments (continued) Instrument

Dimensions

Assessment Method

Reliability

Validity

Sample

14 items

Self-assessment

Not reported

Not reported

N ⫽ 113 medical oncology

CSS9

Physical Coordination Presence Dichotomous yes/no 12 items

Self-assessment

Not reported

Face

N ⫽ 58 advanced cancer; 202 physicians (medical oncologists, radiation oncologists, and palliative care)

CAMPAS-R61

Physical 3 symptom clusters Presence Symptom distress NRS (0–10) 10 items

The Symptom Experience Scale60

“Other”

The Symptom Monitor64

“Not known” option Physical Psychological Caregiver anxiety and depression scored by patient Presence Severity Interference with normal activities VAS (0–100 mm) 10 items

Two “other” Physical

Content Construct (factor analysis)

Self-assessment

Internal consistency (Cronbach’s ␣)

Assisted selfassessment

Face

N ⫽ 129 palliative cancer and noncancer; 20 caregivers

Content Concurrent BPI62 HADS38 EORTC QLQ-C3063

Predictive

Self-assessment

Inter-rater

Content

N ⫽ 160 palliative cancer (78 control group); 13 caregivers; 47 chronically ill elderly

Assisted-self assessment Proxy’s rated assessment

Treatment effect Presence Severity Distress NRS (0–10) Treatment effect (0%-100%) Treatment preferences, NRS (⫺3 to ⫹3)

NOTE. The instruments are listed in chronologic order. Abbreviations: SDS, Symptom Distress Scale; POMS, Profile of Mood States; RSCL, Rotterdam Symptom Checklist; ESAS, Edmonton Symptom Assessment System; KPS, Karnofsky Performance Status; STAS, Support Team Assessment Schedule; MSAS, Memorial Symptom Assessment Scale; FACT-G, The Functional Assessment of Cancer Therapy Scale–G; Mood VAS, Mood Visual Analogue Scale; FLIC, Functional Living Index Cancer; OTTAT, Oncology Treatment Toxicity Assessment Tool; QLI, Quality of Life Index; LASA Pain, Linear Analogue Self-Assessment Pain; HADS, Hospital Anxiety and Depression Scale; McGill PPI, McGill Present Pain Index; Reduced E-STAS, Reduced Expanded Support Team Assessment Schedule; MDASI, M.D. Anderson Symptom Inventory; ECOG, Eastern Cooperative Oncology Group score; NRS, numeric rating scale; PSAR, Pain and Symptom Assessment Record; CSS, The Canberra Symptom Score Card; CAMPAS-R, Cambridge Palliative Assessment Schedule; BPI, Wisconsin Brief Pain Inventory; EORTC QLQ-C30, The European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire C30.

DISCUSSION

A common practical problem faced by oncologists is which symptom instrument to use, when, and how? Targeted symptoms and patient populations influence the choice of instrument. Debilitated patients need shorter instruments for common symptoms.8,88 Abbreviated instruments may speed assessment by combining sympwww.jco.org

toms in clusters.3 Research instruments may differ from those used for clinical practice.94 In our opinion, comprehensive instruments with good psychometric properties (MSAS, Rotterdam Symptom Checklist, Worthing Chemotherapy Questionnaire, Oncology Treatment Toxicity Scale, and the Computerized Symptom Assessment Instrument) are appropriate both for initial clinical assessment and 1465

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Table 4. Modifications of Symptom Assessment Instruments Instrument/Process

Modifying Process

Reliability

Adapted SDS-ASDS32

Modified language, scaling, and items of SDS

Internal consistency (Cronbach’s ␣)

Modified SDS–LASA (0–100)71,73

Modified type of scale

Internal consistency (Cronbach’s ␣)71,73

ASDS-274

Modified ASDS-1; added symptoms and identified subscales

Internal consistency (Cronbach’s ␣)

Validity Content

Construct (discriminative) Face

Content Construct (factor analysis)71 Construct (discriminative)73 Content

Construct (discriminative) Construct (factor analysis)

Sample N ⫽ 32 medical oncology patients; 72 healthy volunteers n ⫽ 120 cancer71; n ⫽ 51 medical oncology and radiotherapy73

N ⫽ 257 (175 oncology, 82 medical surgical); 97 healthy volunteers

N ⫽ 43 advanced cancer

SDS (Italian version)75

Translation, validation

Internal consistency (Cronbach’s ␣)

Revised POMS43

Preserved only the main scales; Modified type of scale Validation Validation of reduced questionnaire; (reduced number of adjectives)

Test-retest

Concurrent POMS69

N ⫽ 90 cancer

Internal consistency (Cronbach’s ␣)

Construct (factor analysis)

N ⫽ 428 cancer (hematologic malignancies, bone marrow transplant candidates)

POMS-short form70

Modified RSCL–The RSCL (revised)79

Excluded four physical symptoms

Internal consistency (Cronbach’s ␣)

Modified RSCL (RSCL-M)81

Added six physical items

Internal consistency (Cronbach’s ␣)

Deleted eight psychological items

Modified ESAS85

Substituted an item (“weakness for activity”);

Construct (convergent/ divergent) Self-rated KPS CES-D76 Bradburn Positive and Negative Effect Scales77 MOS-20 physical function78 Construct (factor analysis) Construct (discriminative) Concurrent HADS38 PAIS80 Content

N ⫽ 434 mixed stage cancer

N ⫽ 1,005 heterogeneous cancer

Construct (factor analysis)

Not reported

Added “pain relief assessment”; Specifying time of assessment

Construct (convergent/ divergent) MOS-3682 MSPSS83 FACIT-Sp84 Content Concurrent RSCL7 BPI62

N ⫽ 80 palliative cancer

ESAS for family caregivers, staff assessment (nurse; physician use)86,87 Modified ESAS for critically ill patients88

Observer rated assessment

Inter-rater86,87

Not reported

N ⫽ 81 palliative cancer; nurses, physicians, family caregivers86,87

Modified type of scale and added other symptoms

Test-retest

Concurrent ESAS8

N ⫽ 100 critically ill cancer (active or past)

Modified ESAS72

Modified type of scale and assessment method (phone interview)

Not reported

Not reported

N ⫽ 190 cancer receiving palliative radiotherapy

(continued on following page)

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Table 4. Modifications of Symptom Assessment Instruments (continued) Instrument/Process ESAS–French version for staff assessment (nurse; physician)89

MSAS-SF90

MSAS modified for family caregivers92

MSAS modified for hospice staff12

MSAS modified for family caregivers93 CMSAS94

Modifying Process

Reliability

Internal consistency (Cronbach’s ␣)

Construct (convergent/ divergent) KPS FACT-G91

N ⫽ 299 medical oncology; 45 medical oncology for testretest

Test-retest

Construct (discriminative) Face

Substituted an item (“fatigue” for “activity”) Observer rated assessment allowed MSAS items measured with respect of distress or frequency alone

Intrarater

Internal consistency (Cronbach’s ␣)

N ⫽ 103 family members of deceased cancer and noncancer patients

Not reported

Not reported

N ⫽ 348 hospice cancer (55%) and noncancer

Internal consistency (Cronbach’s ␣)

Concurrent Patients v family caregivers Content

N ⫽ 98 pairs of advanced cancer patients and dyads N ⫽ 479 medical oncology

Construct (canonical analysis) Construct (convergent/ divergent) KPS Concurrent MSAS–SF90 FACT-G91 Construct (factor analysis) Construct (convergent/ divergent) KPS Construct (discriminative) Concurrent OTTAT50 Face

N ⫽ 282 medical and radiation oncology

Internal consistency (Cronbach’s ␣)

TRSC-Reduced OTTAT95

Reduced number of items

Internal consistency (Cronbach’s ␣)

C-SAS96

Reduced items of Worthing Chemotherapy Questionnaire Initial validation

Not reported

Translation and validation

Internal consistency (Cronbach’s ␣)

MDASI-J97

Sample N ⫽ 42 advanced cancer

Inter-rater

Language of MSAS-GDI adapted for retrospective, after death report Items added; “don’t know” and “not applicable” option added Language and scales adapted for staff assessment; “don’t know” option added; “the most difficult to manage symptom” added Language adapted for family caregiver assessment Reduced number of items Scale modification

Validity Not reported

Translation: French version

Defined a psychological subscale

Content Construct (factor analysis) Construct ( factor analysis)

N ⫽ 120 medical oncology; 23 health professionals

N ⫽ 292 mixed stages cancer (252 outpatient and 40 palliative)

Construct (convergent/ divergent) ECOG POMS–Depression subscale Concurrent MDASI3 EORTC QLQ-C30 (continued on following page)

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Table 4. Modifications of Symptom Assessment Instruments (continued) Instrument/Process MDASI–Chinese version98

MDASI–Greek version (G-MDASI) 99

Modifying Process Translation and validation

Added item (“constipation”); translation and validation

Reliability

Validity

Sample

Internal consistency (Cronbach’s ␣)

Construct (factor analysis)

N ⫽ 249 cancer outpatients

Internal consistency (Cronbach’s ␣)

Test-retest

Construct (convergent/ divergent) ECOG MOS-36 item SF( SF-36)82 Construct (discriminative) Construct (factor analysis)

N ⫽ 150 advanced cancer

Construct (convergent/ divergent) ECOG Construct (discriminative)

NOTE. The instruments are listed in chronologic order. Abbreviations: SDS; Symptom Distress Scale; ASDS, Adapted Symptom Distress Scale; LASA, Linear Analogue Self-Assessment; POMS, Profile of Mood States; KPS, Karnofsky Performance Status; CES-D, Center for Epidemiologic Studies–Depression Scale; MOS-20 PF, Medical Outcomes Study 20-item Short Form Physical Functioning Scale; PF, Physical Functioning Scale; RSCL, Rotterdam Symptom Checklist; MSPSS, Multidimensional Scale of Perceived Social Support and Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being Scale; HADS, Hospital Anxiety and Depression Scale; PAIS, The Psychological Adjustment to Illness Scale; ESAS, Edmonton Symptom Assessment System; MOS-36, Medical Outcomes Study 36-item Short Form; FACIT-Sp, Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being Scale; BPI, Brief Pain Inventory; FACT-G, Functional Assessment of Cancer Therapy Scale–General; MSAS, Memorial Symptom Assessment Scale; GDI, Global Distress Index; CMSAS, Condensed MSAS; TRSC; Therapy-Related Symptom Checklist; OTTAT, Oncology Treatment Toxicity Assessment Tool; C-SAS, Chemotherapy Symptom Assessment Scale; ECOG, Eastern Cooperative Oncology Group; MDASI, M.D. Anderson Symptom Inventory; MDASI-J; MDASI-Japanese version; G-MDASI,MDASI–Greek version; EORTC QLQ-C30, European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire C30.

for research. Psychometrically sound shorter instruments like the MDASI, ESAS, SDS, CAMPAS-R, and Condensed MSAS are useful for follow-up, even though longer instruments can be completed by most patients who have a moderately good performance score. Instruments with five or fewer symptoms (HADS, Index of Nausea and Vomiting, and MANE) are appropriate for symptom-focused assessment, or toxicity. The Symptom Monitor, The Canberra Symptom Score Card, Pain and Symptom Assessment Record, the Symptom Reporting Tool, and the Symptom Experience Scale need additional validation. This review did not identify any instrument that met all of the criteria for an ideal instrument. Some of the issues relevant to the design and use of symptom assessment instruments are summarized. The appropriate content of symptom instruments remains unresolved. Consensus has not been reached about the optimal number of symptoms or scales. A balance must be struck between comprehensiveness and patient compliance with assessment, especially in clinical practice. When too many symptoms are included in an instrument, it overtaxes ill patients and reduces compliance; when too few symptoms are included, important symptoms are overlooked. The degree to which each symptom characteristic contributes to symptom burden is unknown. Symptom severity and distress are important measures of symptom burden.3 Symptom duration should not be minimized as a contributing factor.32,33,57 A moderate but persistent symptom might account for more distress than a severe symptom over a short time. Summated symptom number, duration, severity, and distress scores might better reflect symptom burden. How each dimension separately or in combination influences QOL is unknown. The optimal schedule and manner of assessing patients’ symptoms is also unknown, and may vary with clinical settings. Certain instruments are appropriate for intermittent assessment, as deter1468

mined by timeframes (eg, “past week”7,10 or “past 2 weeks”60), and others could be used daily.3,6,8 A shorter timeframe is appropriate in symptom assessment compared with measurement of QOL, given that symptoms may change rapidly over time. Repeated assessments give a more accurate picture of change in symptom burden and symptom interrelationship.31 Study design (longitudinal v cross sectional) influences reported symptom prevalence.1,31,89,101 Symptom prevalence also depends on the method of assessment. Assisted assessment is more appropriate in sicker patients, who are unable to complete self-assessment instruments.88 Assessment is rated by proxy in the dying patient.8 Proxy assessment is important, but reliability diminishes. The reliability of caregiver assessment for psychological symptoms is less than that for somatic symptoms.86,89,93 Future studies need to determine applicability of instruments based on completion rates and assessment method at different disease stages. The method and degree of instrument validity and reliability varied. The goals of the study, ongoing validation, number, and type of tests for reliability and validity account for this variability. Comparison was difficult because of the different methods and interpretations. Validation using small sample sizes and nonconsecutive patients limited generalizability.6,32 Comparability was complicated by instruments used as standards for reliability and validity. Certain instruments were validated against symptom and QOL instruments with similar physical and psychological symptoms but different timeframes. An example is the ESAS with symptoms assessed “now” validated against MSAS and Functional Assessment of Cancer Therapy– General (“in the past 7 days”).45 Symptom severity (single or summated) and/or global distress were correlated with single symptom or global QOL scores in QOL instruments (eg, the OTTAT summated score v Quality of Life Index50). Validation of symptom instruments with QOL instruments must be interpreted cautiously due to different timeframes, symptoms, and scales. Different ways JOURNAL OF CLINICAL ONCOLOGY

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Table 5. Symptoms Considered in Multiple-Symptom (⬎ five symptoms) Assessment Instruments

Instrument Symptom Pain Other pain or pain descriptors

Headache Fatigue/tiredness Weakness Lack of energy Anorexia Weight loss Weight gain Xerostomia/dry mouth Sore mouth Taste change Nausea Vomiting Dyspepsia/indigestion Dysphagia/difficulty and/or painful swallowing

SDS6 X

X

X

X

Heartburn/acid indigestion Bloating Bowel pattern X Constipation Diarrhea Dyspnea/difficulty X breathing Cough X Hoarseness Sleep problems X (insomnia) Drowsiness or sedation Depression/feeling low Feeling sad Desperate feelings Anxiety Worrying/upset ASDS 1 Feeling tense Agitation/restlessness ASDS 2 Nervousness Feeling irritable Psychological distress Remembering Concentration ASDS 2 Confusion/hallucinations Problems controlling bowels Problems with urination Coordination/dizziness Numbness/tingling hands or feet Appearance/outlook/ X body image Hair loss Skin changes Itching Fever/shivering body ASDS 2 temperature Sweats Edema/swelling of arms or legs Activity/mobility X (Not in the last version) Well-being

RSCL7

ESAS8

X Low back pain; abdominal aches; sore muscles; burning/sore eyes X X ESAS modified89 ESAS modified85 X X X RSCL-M RSCL-M X X X X

X

X

MSAS10 X

A Computerized Symptom Assessment Instrument53 X Chest, arm and shoulder pain (LU); Br

MDASI3

PSAR59

X

X

X Three sites of pain; body diagram; pain type

X

X

X

X

X X X X X X X X X X X X

X X X X (H&N) X (H&N) X X X X X

The Symptom Experience Scale60

Reduced E-STAS57

X

X

X

X

X X

X X X

The Canberra Symptom Score Card9 X Weak or sore muscles

CAMPAS-R61

Symptom Monitor64

X

X

X

X

X X

X

X X

X X

X X

X X

X X

X X

X X X

X

X

X

X X X

X

X

X X X

X

X

X

X

X

X

X X X X X

X

RSCL-M

X

X

X X

X

X X X

X

X

X (LU)

X

X X X

X

X

X

X X

X

X X X X X

X X

X X

X X X (Br)

X X X

X X

X X

X X X

X

X X

X

RSCL-M RSCL-M X X

X X X

X

X

X

X X RSCL-M

X X X

X (Br) X (Br; H&N)

X

X X X

X (in a version with QOL assessment)

X

X X (Br) X (H&N; LU)

X (continued on following page)

www.jco.org

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Table 5. Symptoms Considered in Multiple-Symptom (⬎ five symptoms) Assessment Instruments (continued)

Instruments Symptoms

SDS6

Interference with life (general activity, mood, work, relations with other people, walking, enjoyment of life) Sexual problems (interest or activity) Option “other” symptoms Not enough family support, not given enough information, unable to perform usual activities ⫹ other specific issues for breast; H&N; lung cancers; caregiver’s anxiety and depression

RSCL7

ESAS8

MSAS10

A Computerized Symptom Assessment Instrument53

Reduced E-STAS57

MDASI3

X

X

PSAR59

The Symptom Experience Scale60

The Canberra Symptom Score Card9

CAMPAS-R61

Symptom Monitor64

X

X X

X

X X

X

X X

X

X

NOTE. The symptom assessment instruments were developed for disease-related symptoms. The instruments are listed in chronologic order. If a symptom was added to a modification, the name of the altered instrument is reported. Symptoms may vary in the modified versions. Abbreviations: SDS, Symptom Distress Scale; Br, breast cancer; RSCL, Rotterdam Symptom Checklist; ESAS, Edmonton Symptom Assessment System; MSAS, Memorial Symptom Assessment Scale; STAS, Support Team Assessment Schedule; MDASI, M.D. Anderson Symptom Inventory; PSAR, Pain and Symptom Assessment Record; CAMPAS-R, Cambridge Palliative Assessment Schedule; H&N, head and neck cancer; LU, lung cancer; ASDS, Adapted Symptom Distress Scale; QOL, quality of life.

of assessment (self, assisted, or observer rated) increases flexibility but raises the issue of reliability. Proxy assessment with three different raters on a single occasion might improve reliability.87 Observer-rated assessment needs to be tested against self-assessment for agreement in

longitudinal studies. Instrument validation should be performed in large consecutive homogeneous patient populations, using all types of reliability/validity tests, and against instruments with similar symptoms, dimensions, and timeframes.

Table 6. Symptom Assessment Instruments Compared With Ideal Symptom Instrument Instrument

Modificationⴱ

Flexible†

Comprehensive‡

Scale§

Reliability㛳

Validity¶

SDS6,42 RSCL7 ESAS8,44,45 MSAS10 OTTAT50 A Computerized Symptom Assessment Instrument53 Worthing Chemotherapy Questionnaire56 Reduced E-STAS57 MDASI3 PSAR59 The Symptom Experience Scale60 CSS9 CAMPAS-R61 The Symptom Monitor64

Yes Yes Yes Yes Yes No Yes No Yes No No No No No

2 1 3 2 1 1 1 1 4 1 1 1 2 2

3 4 3 5 5 4 5 3 4 3 3 3 3 3

5 5 4 5 5 5 4 4 4 4 3 4 4 4

4 3 3 4 3 0 3 0 4 0 0 0 3 2

3 4 4 4 3 4 4 0 4 1 0 2 4 1

Completion Decision Time# Makingⴱⴱ 5 4 5 0 3 4 0 5 5 0 0 5 5 5

4 5 4 5 5 5 5 4 5 5 3 4 5 4

NOTE. Selected instruments assessing multiple symptoms (⬎ 5) are included. POMS was excluded because adjectives were used rather than symptoms. The instruments are listed in chronologic order. Instrument attributes are graded as follows: 1, poor; 2, poor to moderate; 3, moderate; 4, moderate to good; 5, good. If reliability/validity results or completion time were not reported, the score is 0. Abbreviations: SDS, Symptom Distress Scale; RSCL, Rotterdam Symptom Checklist; ESAS, Edmonton Symptom Assessment System; MSAS, Memorial Symptom Assessment Scale; OTTAT, Oncology Treatment Toxicity Assessment Tool; Reduced E-STAS, Reduced Expanded Support Team Assessment Schedule; MDASI, M.D. Anderson Symptom Inventory; PSAR, Pain and Symptom Assessment Record; CSS, Canberra Symptom Score Card; CAMPAS-R, Cambridge Palliative Assessment Schedule. ⴱ As reported in Table 3. †More than one type of assessment method. ‡Covering more symptoms. §Easy to understand, providing sufficient information is obtained. 㛳Precision. ¶Accuracy. #Easy to complete. ⴱⴱFacilitates symptom management.

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Prevalence studies using nonvalidated instruments (based on routine clinical practice) have provided important information about symptom prevalence and severity. However, nonvalidated instruments for clinical and/or research purposes may not be reliable or generalizable.101,102,109 The use of such nonvalidated checklists may be due to lack of knowledge about validated instruments, the limited number of validated instruments, or concerns about comprehensiveness and face validity. Comfort with an instrument differs when assessing different cancer populations. Whether to continue to validate established instruments or develop new ones is an important question. There are no guarantees that new instruments will be superior to existing ones. Validation is costly and labor intensive. Cancer-symptom assessment is complex and challenges investigators because of the lack of universally accepted validation guidelines. Prospective controlled trials comparing validated symptom instruments will help identify the best instruments for routine assessment, and facilitate guidelines for comprehensive cancer symptom assessment. Research into validating caregiver-rated or caregiver-assisted symptom assessment is needed. REFERENCES 1. Coyle N, Adelhardt J, Foley KM, et al: Character of terminal illness in the advanced cancer patient: Pain and other symptoms during the last four weeks of life. J Pain Symptom Manage 5:83-93, 1990 2. Corner J, Hopkinson J, Fitzsimmons D, et al: Is late diagnosis of lung cancer inevitable? Interview study of patients’ recollections of symptoms before diagnosis. Thorax 60:314-319, 2005 3. Cleeland CS, Mendoza TR, Wang XS, et al: Assessing symptom distress in cancer patients: The M.D. Anderson Symptom Inventory. Cancer 89: 1634-1646, 2000 4. Cleeland CS, Reyes-Gibby CC: When is it justified to treat symptoms? Measuring symptom burden. Oncology 16:64-70, 2002 5. Homsi J, Walsh D, Nelson KA, et al: The impact of a palliative medicine consultation service in medical oncology. Support Care Cancer 10:337342, 2002 6. McCorkle R, Young K: Development of a symptom distress scale. Cancer Nurs 1:373-378, 1978 7. de Haes JC, van Knippenberg FC, Neijt JP: Measuring psychological and physical distress in cancer patients: Structure and application of the Rotterdam Symptom Checklist. Br J Cancer 62: 1034-1038, 1990 8. Bruera E, Kuehn N, Miller MJ, et al: The Edmonton Symptom Assessment System (ESAS): A simple method for the assessment of palliative care patients. J Palliat Care 7:6-9, 1991 9. Barresi MJ, Shadbolt B, Byrne D, et al: The development of the Canberra Symptom Score Card: A tool to monitor the physical symptoms of patients with advanced tumours. BMC Cancer 3:32, 2003 10. Portenoy RK, Thaler HT, Kornblith AB, et al: The Memorial Symptom Assessment Scale: An instrument for the evaluation of symptom prevalence, characteristics and distress. Eur J Cancer 30:1326-1336, 1994 11. Higginson IJ, McCarthy M: Validity of the Support Team Assessment Schedule: Do staffs’ ratings reflect those made by patients or their families? Palliat Med 7:219-228, 1993 www.jco.org

In conclusion, a systematic review of assessment instruments found only a minority of studies accessible by MEDLINE. Relatedlinks searches and searches by hand were essential. Twenty-one instruments were reviewed. Heterogeneity exists in symptom design, number and type of symptoms, methodology, and timeframe. There is no consensus about how each symptom dimension determines burden, and a summated index might better reflect burden. QOL instruments are often substituted for symptom assessment and used for validation. Validation against these instruments should be interpreted with caution. Comparison of psychometric properties between instruments was impossible because of differences in characteristics, outcomes, validation, and reliability testing. Whether to continue the validation process or develop new instruments needs to be carefully explored because validation is lengthy and costly. Validated symptom instruments provide reliability, but comprehensive nonvalidated instruments contribute to understanding symptom prevalence. The choice of instrument depends on the purpose, including research, clinical practice, or targeted symptoms.

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Appendix The Appendix is included in the full-text version of this article, available online at www.jco.org. It is not included in the PDF (via Adobe® Acrobat Reader®) version. Authors’ Disclosures of Potential Conflicts of Interest The authors indicated no potential conflicts of interest.

Author Contributions Conception and design: Jordanka Kirkova, Mellar P. Davis, Declan Walsh, Eoin Tiernan Administrative support: Declan Walsh Collection and assembly of data: Jordanka Kirkova, Mellar P. Davis, Declan Walsh, Eoin Tiernan, Norma O’Leary Manuscript writing: Jordanka Kirkova, Mellar P. Davis, Declan Walsh Final approval of manuscript: Jordanka Kirkova, Mellar P. Davis, Declan Walsh, Eoin Tiernan, Norma O’Leary, Susan B. LeGrand, Ruth L. Lagman, K. Mitchell Russell

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