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Palliative Medicine

DOI: 10.1191/026921698674135173 1998; 12; 75 Palliat Med

Elizabeth Rees, Janet Hardy, Julie Ling, Karen Broadley and Roger A'Hern The use of the Edmonton Symptom Assessment Scale (ESAS) within a palliative care unit in the UK

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The use of the Edmonton Symptom AssessmentScale (ESAS) within a palliative care unit in the UKElizabeth Rees Research Nurse, Janet Hardy Consultant in Palliative Medicine, Julie Ling Research Nurse,Karen Broadley Consultant in Palliative Medicine, Roger A’Hern Statistician, Department of PalliativeMedicine, Royal Marsden NHS Trust, London and Surrey

Key words: neoplasms; outcome and process assessment (health care);palliative care; quality of life

The Edmonton Symptom Assessment scale (ESAS) was used on 1004occasions to assess 71 patients with advanced malignant disease admittedto a palliative care unit in the UK over a six-week period. The median lengthof inpatient stay was eight days (range 1–36) and the median survival fromstart of ESAS to death was 16 days (range 2–202). Across all patients therewas a trend towards worsening symptom scores over the first five daysfrom admission with a significant deterioration in appetite scores. Whenscores were analysed retrospectively over five days according to outcome(death – group 1, or discharge – group 2) there was a significantimprovement in pain scores in group 2 but no change in overall score, and asignificant deterioration in activity, drowsiness and appetite in group 1 withno change in overall score. ESAS did not seem an appropriate tool in thisgroup of patients as the total symptom scores were so often biased by theinevitable increase in individual symptom scores immediately prior to death.

Mots clés: néoplasmes; évaluation de la fin du séjour et de sondéroulement (soins de santé); soins palliatifs; qualité de vie

L’échelle d’évaluation des symptômes d’Edmonton (ESAS) a été utilisée 1004fois en 6 semaines pour évaluer 71 patients atteints d’une maladie maligne àun stade avancé, admis dans un centre de soins palliatifs du Royaume-Uni.La durée moyenne d’hospitalisation est de huit jours (etrêmes 1–36) et lasurvie moyenne de la première utilisation de l’ESAS au décès est de 16 jours(etrêmes 2–202). On observe pour l’ensemble des patients une tendance àl’aggravation du score des symptômes au cours des cinq jours qui suiventl’admission avec une détérioration significative du score de l’appétit. Quandon analyse rétrospectivement les scores pendant les cinq derniers jours,selon que la fin du séjour est le décès (groupe 1) ou la sortie (groupe 2), onremarque une amélioration significative du score de la douleur dans legroupe 2 mais pas de changement dans le score global et une détériorationsignificative de l’activité, de la somnolence et de l’appetit dans le groupe 1,sans changement dans le score global. ESAS ne nous semble pas un outilapproprié dans ce groupe de patients car, jusqu’avant le décès, le scored’ensemble des symptômes est trop souvent, et inévitablement, influencépar l’augmentation du score d’un symptôme isolé.

Palliative Medicine 1998; 12: 75–82

© Arnold 1998 0267–6591(98)PM114OA

Address for correspondence: Ms Elizabeth Rees, Department ofPalliative Medicine, Chevallier Ward, The Royal Marsden NHSTrust, Downs Road, Sutton, Surrey SM2 5PT, UK.

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Introduction

As symptom control is one of the main aims of pal-liative care, it should, theoretically, be assessed asa primary end-point or outcome measure. To thisend, many attempts have been made to develop theideal tool for measuring symptom control in a pal-liative care setting. These tools have included notonly quality-of-life scores (most of which weredeveloped for assessing life satisfaction in cancerpatients at relatively early stages of their disease)but also more functional tools for the quantificationof symptom severity.1 One such measure is theEdmonton Symptom Assessment Scale (ESAS)which has been developed and used as an integralpart of routine practice by the Edmonton palliativecare unit in North America.2 It consists of a num-ber of visual analogue scales (VAS) relating to specific symptoms. These are normally completedby the patient and are then summarized on a chartto provide a symptom profile of each patient.

The aim of this study was to test the feasibility,usefulness and practicality of ESAS in a hospital-based palliative care ward in the UK.

Methods

The ESAS consists of nine 10 cm VAS used for thetwice daily assessment of pain, activity, nausea,depression, anxiety, drowsiness, appetite, sensationof well-being and shortness of breath. A tenth VASis left free for patients individually to add any othersymptom that is troublesome to them. The left sideof the line corresponds to the lowest level for thesymptom (least troublesome) and the right the high-est (most troublesome). If possible, patients scoretheir individual symptoms by marking the VAS witha vertical line. If patients are unable to score theVAS themselves, a relative, carer or nurse is askedto do it for them. At the bottom of the assessmentchart a space is provided for noting who performedthe assessment. Scores for each individual symptomare calculated by measuring along the line from theleft-hand side to the point where the patient hasmade their mark. These values (from 0 to 100 mm)are rounded to the nearest centimetre and trans-ferred on to a graph, thus presenting a clear visualdisplay of changes in patients’ symptoms over a two-week period. The total score for all symptoms each

day is referred to as the symptom distress score(SDS). Lower scores are taken to imply bettersymptom control. The completion of the tenth VASin this study was variable, inconsistent and wasexcluded from the analysis of the SDS. The highestpossible score is therefore 900.

The palliative care unit within this cancer centreadmits patients for symptom control, rehabilitationand/or terminal care. Most patients have complet-ed specific anti-cancer therapy. During the six-weekstudy period, all inpatients on the palliative carewards (London and Surrey) were assessed twicedaily using ESAS. Assessment sheets were given outeach morning by the nursing staff who were askedto oversee their completion. The unit research nurs-es carried overall responsibility for collecting com-pleted forms and tabulating the results.

Patients were encouraged to perform their ownassessments wherever possible or with help fromtheir nurse. When this was not possible the assess-ments were carried out by the nurse alone, their careror the ward doctor. The assessments were performedin the morning and the evening (approximately 10am and 6 pm). The individual scores for each sepa-rate symptom were calculated on a day-to-day basisas well as the total score of all the individual patientssymptoms (SDS). These symptom scores were trans-ferred onto a master graph on a daily basis.

Statistical methodsIn the original publication by Bruera et al.2 resultsare expressed as the mean and standard deviationin the case of continuous variables and as a per-centage in the case of proportions. Statisticalanalysis in this study was performed using the χ2-test for the comparison of proportions and Student’s t-test for continuous variables, accordingto the Statistical Package for Social Sciences(SPSS). The paired t-test was used to assess the significance of changes. Daily scores were calculatedby averaging the morning and afternoon scores.

The results are discussed in relation to overalland individual symptoms scores sequentially fromdays 1 to 5 as per Bruera et al.2 They are alsoanalysed in two separate patient groups: thosewhose admission ended in discharge home andthose whose admission ended in death. In thesecases, the scores were analysed retrospectively forthe five days preceding either discharge or death, aswell as for the entire inpatient period.

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Results

During the six-week study period from 19 August to29 September 1996, a total of 1004 assessmentswere carried out over 590 patient days for 71 con-secutive patients admitted during this time period.Patients already inpatients on the first day of thestudy were excluded from the analysis. Patient char-acteristics are listed in Table 1. Their median sur-vival from the start of the ESAS study period was16 days (range 2–202). The median duration of eachinpatient admission was eight days (range 1–36).The admission ended in discharge for 38 patients(54%) and in death for 33 (46%) patients, of whomeight died within four days of admission. Six of thepatients who were discharged were transferred to alocal hospice.

On day 1, 63% of patients were able to performtheir own assessments. This had fallen to 52% onthe final assessment day (see Table 2). It is notablethat a doctor was only involved in assessments inone case.

Across all patients, the mean SDS was 375 at day1, 395 at day 3 and 422 at day 5. Although the scoresincreased, the change in SDS between days 1 and 5was not statistically significant (Table 3). When indi-vidual symptoms were analysed, the only symptomin which there was a significant difference betweendays 1 and 5 was appetite, which was significantlyworse at day 5.

The analysis according to patient outcome (i.e.whether the admission resulted in patient death(group 1) or discharge (group 2) is shown in Table 4.A negative value for the mean score change indicatesan increase in symptom severity. In group 1 there was

The use of ESAS in a palliative care unit in the UK 77

Table 1 Patients characteristics

Number

Number of patients 71Sex (female/male) 47/24Median age, years (range) 63 (29–89)Median length of stay, days (range) 8 (1–36)Median survival, days (range) 16 (2–202)Primary tumour

Breast 24Prostate 10Ovary 8Gastro-intestinal tract 6Cervix 4Renal Cell 3Lung 2Melanoma 2Brain 2Sarcoma 2Bladder 2Haematological malignancies 1Head and neck 1Vulva 1Penis 1Unknown primary 2

Table 2 Completion of assessments

First Lastassessment assessmentn (%) n (%)

Patient 45 (63) 37 (52)Family 2 (3) 2 (3)Nurse 13 (18) 26 (37)Nurse assisted 10 (15) 6 (8)Doctor 1 (1) 0

Table 3 Mean individual scores for all patients. Days 1–5

Patient day Patient day Patient day Patient day Patient daySymptom 1 2 3 4 5 Significance

Pain 29.2 31.0 30.4 31.5 31.1 NSActivity 70.6 74.8 72.4 72.8 79.7 NSNausea 20.0 23.7 18.1 18.5 18.7 NSDepression 29.5 36.0 32.8 38.5 34.4 NSAnxiety 32.8 37.7 33.8 34.5 36.3 NSDrowsiness 47.7 48.3 51.3 51.8 56.7 NSAppetite 57.8 59.3 61.9 60.6 67.4 P = 0.016Well-being 53.7 62.9 58.8 59.9 60.6 NSShortness of breath 32.6 39.2 38.3 36.7 35.3 NSSDS 375.3 410.9 395.4 403.4 422.7 NSStandard deviation ±156.7 ±146.6 ±154.6 ±151.8 ±146.8Number of patients 71 69 62 54 51

NS, not significant (P > 0.05).

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a nonsignificant progressive deterioration in the totalSDS until death, primarily because of a significantworsening in activity, drowsiness and appetite scores.In group 2 there was a nonsignificant improvement inthe overall score and no significant change in anysymptoms, although the improvement in pain scoresalmost reached statistical significance (P = 0.08).

Table 5 shows the mean individual and totalscores for the two groups of patients on the day ofadmission and day prior to death or discharge irre-spective of the length of inpatient stay, together withthe mean change. In group 1, there was a significantdeterioration in activity, drowsiness, appetite andgeneral well-being scores reflected in a significantdeterioration in SDS. In group 2, there was a sig-nificant improvement in pain scores but no changein any other individual symptom or SDS.

Discussion

This study shows a statistically nonsignificant trendtowards worsening symptom scores over time in in-

patients on a palliative care ward. We would suggestthat the increase in SDS scores in our patients is notdue to poor symptom control as such, but representsthe general deterioration in the condition of apatient with advanced malignancy who is enteringthe final stage of their illness. In particular, the wors-ening SDS scores over the five days preceding deathare primarily as a result of the inevitable decreasein activity, appetite and alertness as a patientapproaches death (Figure 1). The high scores docu-mented for these symptoms often skewed the totalsymptom score. This reflects the fact that 46% of theadmissions followed in this study ended in death andthat the median survival of all patients entered wasonly 16 days, as is characteristic of the patient pop-ulation treated in this unit. We would postulate thatas a patient’s condition deteriorates, the ESASbecomes an inappropriate means of assessing symp-tom control (see case history).

On the other hand the nonsignificant trend inimproved symptom control in the patients who weredischarged would perhaps have been significantwith a larger group of patients.

78 E Rees et al.

Table 4 Changes in symptom scores days 5–1 in patients according to outcome (i.e. death during admission or discharge)

Patients whose admission resulted in death (group 1)

Mean score day 5 Mean score day 1 Mean score change(five days prior to death) (one day prior to death) (days 5–1) Significance

Pain 20.5 25.4 −4.9 NSActivity 82.2 96.7 −14.5 P = 0.03Nausea 24.0 13.6 10.4 NSDepression 31.5 26.1 5.4 NSAnxiety 36.1 31.0 5.1 NSDrowsiness 55.2 82.1 −26.9 P = 0.002Appetite 69.0 90.2 −21.2 P = 0.02Well-being 63.2 72.2 −9.0 NSShortness of breath 40.2 44.1 −3.9 NSSDS 448.6 485.0 −45.5 NS

Patients whose admission resulted in discharge (group 2)

Mean score day 5 Mean score day 1(five days prior (one day prior Mean score changeto discharge) to discharge) (day 5 to home) Significance

Pain 33.7 19.4 14.3 NSActivity 66.2 59.0 7.2 NSNausea 15.0 24.2 −9.2 NSDepression 30.8 35.6 −4.8 NSAnxiety 35.0 37.0 −2.0 NSDrowsiness 37.1 31.8 5.3 NSAppetite 67.2 49.8 17.4 NSWell-being 60.5 45.6 14.9 NSShortness of breath 27.3 31.9 −4.6 NSSDS 408.0 341.1 59.0 NS

NS, not significant (P > 0.05).

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As our results are in complete variance to thoseof Bruera et al.2 who showed an improvement insymptom scores over the first five days of admission,we can only surmise that the patients seen at theEdmonton unit are at an earlier stage of disease orof better performance status. The fact that the meanadmission period in Edmonton was three times aslong as that seen in this unit and that 84% ofpatients were able to make their own assessmentssometime during admission (as compared with only63% at best in ours) supports this premise. It alsosuggests that our admission criteria may vary andthat the patient populations under study are differ-ent. Bruera et al.2 also states that scores were nolonger documented when it became inappropriatebut it is not clear how this was defined.

VAS are reported as being simple and effectivetools which take only a few minutes to complete.3In our group of patients a number of difficultiesbecame apparent. Patients of poor performance sta-tus found the ESAS forms lengthy and many did nothave the concentration required to complete them.Many found it difficult to understand the principleof completing a VAS and would write along the linerather than mark it or make some attempt to ‘keepthe nurses happy’ (see Figure 2). Several of the

symptoms, e.g. anxiety, drowsiness, depression andgeneral well-being are exceedingly difficult to scorein very ill or dying patients, especially in thosepatients under sedation. In this study, these symp-toms were ‘guestimated’ by the nursing staff right upto the time of death. In Bruera et al.’s study,2 theseVAS were not completed and it is not clear if theseincomplete forms were subsequently excludedfrom the data analysis.

A number of other practical problems wereencountered during the study period. Firstlypatients were not consistent when completing theirchosen symptom VAS (e.g. hiccoughs or constipa-tion) and would change the symptom on a dailybasis or would fail to complete the section at all. As a result the extra VAS was not included in theoverall analysis. The lack of a VAS for constipationis surprising as this is a particularly common symp-tom in palliative care patients.4 Some of thepatients commented that they did not understandthe concept of well-being and found it difficult to score. There were no notable differences insymptom scores in the morning and evening and it is suggested therefore that the forms be com-pleted only once daily at a time most suited to theindividual ward routine, a stance also taken by

The use of ESAS in a palliative care unit in the UK 79

Table 5 Changes in symptom scores in patients according to outcome (death or discharge)

Mean score Mean score day 1 Mean score change (day (day of admission) (one day prior to death) of admission to day 1) Significance

Pain 17.8 25.4 7.0 NSActivity 71.5 96.7 23.9 P = 0.006Nausea 21.7 13.6 −10.7 NSDepression 22.4 26.1 1.0 NSAnxiety 26.3 31.0 4.7 NSDrowsiness 52.6 82.1 27.0 P = 0.0044Appetite 58.9 90.2 29.3 P = 0.002Well-being 43.1 72.2 28.2 P = 0.003Shortness of breath 36.1 44.1 4.0 NSSDS 350.4 485.0 110.0 P = 0.016

Mean score Mean score day −1 Mean score change day day of admission (one day prior to discharge) of admission to home Significance

Pain 28.5 19.4 10.2 P = 0.03Activity 67.3 59.0 −7.0 NSNausea 16.7 24.2 7.9 NSDepression 33.5 35.6 4.4 NSAnxiety 30.8 37.0 5.0 NSDrowsiness 36.9 31.8 −5.0 NSAppetite 50.4 49.8 1.2 NSWell-being 54.4 45.6 −9.4 NSShortness of breath 36.0 31.9 −2.9 NSSDS 354.4 341.1 −3.9 NS

NS, not significant (P > 0.05).

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80 E Rees et al.

Figure 1 A completed ESAS graph

Case history

A 60-year-old retired builder diagnosed with a glioblastoma 16 months before was admitted to thepalliative care unit from within the hospital with problems of dysphagia and dysphasia. His generalcondition deteriorated over a week. When he was no longer able to tolerate oral medications he wassedated on a continuous subcutaneous infusion of analgesics and benzodiazepines. He died com-fortably and peacefully with his wife present 11 days after admission to the ward.

The patients overall SDS increased markedly as he became unconscious on day 7 (see Figure 1)reflecting the increase in appetite, activity and drowsiness scores. The graph highlights the problemof using ESAS as a symptom control measure when patients have reached the terminal stage of theirdisease as it appears that his symptoms are no longer under control, when in fact he remained rela-tively symptom free.

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Harlos and Dudgeon.5 Patients’ assessments weretime consuming for the ward nurses involved due tothe time spent explaining the purpose and methodof completing the form. Scores were plotted on the master graph by one individual each morningwhich was also very time consuming. In hindsightthis would perhaps have been completed more effi-ciently by the patient’s individual nurse at the timeof assessment. Although not formally assessed, the graph did not tend to influence the day-to-daymanagement of patient care by any members of the multidisciplinary team, but merely confirmedthe team’s day-to-day assessment of the patientssymptom severity. They were a useful display, how-ever, of patients symptom trends over a period oftime (Figure 1).

In summary, although ESAS provides a clear dis-play of patients symptoms over time, we have notfound it practical for use in our group of patientswho have a poor performance status. ESAS wouldperhaps work better in our group of patients withcertain modifications. A convention could be setregarding which way to score certain VAS in sedat-ed patients, for example whether well-being should

be high or low, or even to discontinue assessmentin this group of patients.

An individualized approach may be a moreappropriate method than health related checklists.The ultimate quality of life or symptom assessmenttool for palliative care patients is still awaited.

AcknowledgementThe authors would like to thank the ward nurseswho dedicated their time to help run this study andto the members of the South Thames Palliative CareResearch Group for their comments.

References

1 Richards MA, Ramirez AJ. Quality of life: the mainoutcome measure of palliative care. Palliat Med1997; 11: 89–92.

2 Bruera E, Kuehn N, Miller M, Selmser P, MacmillanK. The Edmonton Symptom Assessment System(ESAS): a simple method for the assessment ofpalliative care patients. J Palliat Care 1991; 7(2):6–9.

The use of ESAS in a palliative care unit in the UK 81

Figure 2 A completed ESAS VAS

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3 Price DD, McGrath P, Raffi A et al. The validationof a visual analogue scale or ratio scale for pain.Pain 1983; 17: 45–46.

4 Donnelly S, Walsh D. The symptoms of advancedcancer. Semin Oncol. 1995; 22: 67–72.

5 Harlos M, Dudgeon D. The use of the EdmontonSymptom Assessment Tool in determining patternsof symptom control. Abstract from the CanadianCancer Society Conference, 1995.

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