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The use of the Edmonton Symptom Assessment Scale (ESAS) within a palliative care unit in the UK Elizabeth Rees, Janet Hardy, Julie Ling, Karen Broadley and Roger A'Hern Palliat Med 1998; 12; 75 DOI: 10.1191/026921698674135173 The online version of this article can be found at: http://pmj.sagepub.com/cgi/content/abstract/12/2/75

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Palliative Medicine 1998; 12: 75–82

The use of the Edmonton Symptom Assessment Scale (ESAS) within a palliative care unit in the UK Elizabeth 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 Palliative Medicine, 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 1004 occasions to assess 71 patients with advanced malignant disease admitted to a palliative care unit in the UK over a six-week period. The median length of inpatient stay was eight days (range 1–36) and the median survival from start of ESAS to death was 16 days (range 2–202). Across all patients there was a trend towards worsening symptom scores over the first five days from admission with a significant deterioration in appetite scores. When scores were analysed retrospectively over five days according to outcome (death – group 1, or discharge – group 2) there was a significant improvement in pain scores in group 2 but no change in overall score, and a significant deterioration in activity, drowsiness and appetite in group 1 with no change in overall score. ESAS did not seem an appropriate tool in this group of patients as the total symptom scores were so often biased by the inevitable increase in individual symptom scores immediately prior to death. Mots clés: néoplasmes; évaluation de la fin du séjour et de son déroulement (soins de santé); soins palliatifs; qualité de vie L’échelle d’évaluation des symptômes d’Edmonton (ESAS) a été utilisée 1004 fois en 6 semaines pour évaluer 71 patients atteints d’une maladie maligne à un 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 la survie 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 à l’aggravation du score des symptômes au cours des cinq jours qui suivent l’admission avec une détérioration significative du score de l’appétit. Quand on 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), on remarque une amélioration significative du score de la douleur dans le groupe 2 mais pas de changement dans le score global et une détérioration significative 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 outil approprié dans ce groupe de patients car, jusqu’avant le décès, le score d’ensemble des symptômes est trop souvent, et inévitablement, influencé par l’augmentation du score d’un symptôme isolé. Address for correspondence: Ms Elizabeth Rees, Department of Palliative Medicine, Chevallier Ward, The Royal Marsden NHS Trust, Downs Road, Sutton, Surrey SM2 5PT, UK. © Arnold 1998

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Introduction As symptom control is one of the main aims of palliative care, it should, theoretically, be assessed as a primary end-point or outcome measure. To this end, many attempts have been made to develop the ideal tool for measuring symptom control in a palliative care setting. These tools have included not only quality-of-life scores (most of which were developed for assessing life satisfaction in cancer patients at relatively early stages of their disease) but also more functional tools for the quantification of symptom severity.1 One such measure is the Edmonton Symptom Assessment Scale (ESAS) which has been developed and used as an integral part of routine practice by the Edmonton palliative care unit in North America.2 It consists of a number of visual analogue scales (VAS) relating to specific symptoms. These are normally completed by the patient and are then summarized on a chart to provide a symptom profile of each patient. The aim of this study was to test the feasibility, usefulness and practicality of ESAS in a hospitalbased palliative care ward in the UK.

Methods The ESAS consists of nine 10 cm VAS used for the twice daily assessment of pain, activity, nausea, depression, anxiety, drowsiness, appetite, sensation of well-being and shortness of breath. A tenth VAS is left free for patients individually to add any other symptom that is troublesome to them. The left side of the line corresponds to the lowest level for the symptom (least troublesome) and the right the highest (most troublesome). If possible, patients score their individual symptoms by marking the VAS with a vertical line. If patients are unable to score the VAS themselves, a relative, carer or nurse is asked to do it for them. At the bottom of the assessment chart a space is provided for noting who performed the assessment. Scores for each individual symptom are calculated by measuring along the line from the left-hand side to the point where the patient has made their mark. These values (from 0 to 100 mm) are rounded to the nearest centimetre and transferred on to a graph, thus presenting a clear visual display of changes in patients’ symptoms over a twoweek period. The total score for all symptoms each

day is referred to as the symptom distress score (SDS). Lower scores are taken to imply better symptom control. The completion of the tenth VAS in this study was variable, inconsistent and was excluded from the analysis of the SDS. The highest possible score is therefore 900. The palliative care unit within this cancer centre admits patients for symptom control, rehabilitation and/or terminal care. Most patients have completed specific anti-cancer therapy. During the six-week study period, all inpatients on the palliative care wards (London and Surrey) were assessed twice daily using ESAS. Assessment sheets were given out each morning by the nursing staff who were asked to oversee their completion. The unit research nurses carried overall responsibility for collecting completed forms and tabulating the results. Patients were encouraged to perform their own assessments wherever possible or with help from their nurse. When this was not possible the assessments were carried out by the nurse alone, their carer or the ward doctor. The assessments were performed in the morning and the evening (approximately 10 am and 6 pm). The individual scores for each separate symptom were calculated on a day-to-day basis as well as the total score of all the individual patients symptoms (SDS). These symptom scores were transferred onto a master graph on a daily basis. Statistical methods In the original publication by Bruera et al.2 results are expressed as the mean and standard deviation in the case of continuous variables and as a percentage in the case of proportions. Statistical analysis in this study was performed using the χ2-test for the comparison of proportions and Student’s t-test for continuous variables, according to the Statistical Package for Social Sciences (SPSS). The paired t-test was used to assess the significance of changes. Daily scores were calculated by averaging the morning and afternoon scores. The results are discussed in relation to overall and individual symptoms scores sequentially from days 1 to 5 as per Bruera et al.2 They are also analysed in two separate patient groups: those whose admission ended in discharge home and those whose admission ended in death. In these cases, the scores were analysed retrospectively for the five days preceding either discharge or death, as well as for the entire inpatient period.


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

Results

Table 1 Patients characteristics Number Number of patients Sex (female/male) Median age, years (range) Median length of stay, days (range) Median survival, days (range) Primary tumour Breast Prostate Ovary Gastro-intestinal tract Cervix Renal Cell Lung Melanoma Brain Sarcoma Bladder Haematological malignancies Head and neck Vulva Penis Unknown primary

71 47/24 63 (29–89) 8 (1–36) 16 (2–202) 24 10 8 6 4 3 2 2 2 2 2 1 1 1 1 2

Table 2 Completion of assessments

Patient Family Nurse Nurse assisted Doctor

First assessment n (%)

Last assessment n (%)

45 (63) 2 (3) 13 (18) 10 (15) 1 (1)

37 (52) 2 (3) 26 (37) 6 (8) 0

During the six-week study period from 19 August to 29 September 1996, a total of 1004 assessments were carried out over 590 patient days for 71 consecutive patients admitted during this time period. Patients already inpatients on the first day of the study were excluded from the analysis. Patient characteristics are listed in Table 1. Their median survival from the start of the ESAS study period was 16 days (range 2–202). The median duration of each inpatient admission was eight days (range 1–36). The admission ended in discharge for 38 patients (54%) and in death for 33 (46%) patients, of whom eight died within four days of admission. Six of the patients who were discharged were transferred to a local hospice. On day 1, 63% of patients were able to perform their own assessments. This had fallen to 52% on the final assessment day (see Table 2). It is notable that a doctor was only involved in assessments in one case. Across all patients, the mean SDS was 375 at day 1, 395 at day 3 and 422 at day 5. Although the scores increased, the change in SDS between days 1 and 5 was not statistically significant (Table 3). When individual symptoms were analysed, the only symptom in which there was a significant difference between days 1 and 5 was appetite, which was significantly worse 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 indicates an increase in symptom severity. In group 1 there was

Table 3 Mean individual scores for all patients. Days 1–5 Symptom Pain Activity Nausea Depression Anxiety Drowsiness Appetite Well-being Shortness of breath SDS Standard deviation Number of patients

Patient day 1 29.2 70.6 20.0 29.5 32.8 47.7 57.8 53.7 32.6 375.3 ±156.7 71

Patient day 2 31.0 74.8 23.7 36.0 37.7 48.3 59.3 62.9 39.2 410.9 ±146.6 69

Patient day 3 30.4 72.4 18.1 32.8 33.8 51.3 61.9 58.8 38.3 395.4 ±154.6 62

Patient day 4 31.5 72.8 18.5 38.5 34.5 51.8 60.6 59.9 36.7 403.4 ±151.8 54

NS, not significant (P > 0.05).


Patient day 5 31.1 79.7 18.7 34.4 36.3 56.7 67.4 60.6 35.3 422.7 ±146.8 51

Significance NS NS NS NS NS NS P = 0.016 NS NS NS

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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 (five days prior to death) Pain Activity Nausea Depression Anxiety Drowsiness Appetite Well-being Shortness of breath SDS

20.5 82.2 24.0 31.5 36.1 55.2 69.0 63.2 40.2 448.6

Mean score day 1 (one day prior to death) 25.4 96.7 13.6 26.1 31.0 82.1 90.2 72.2 44.1 485.0

Mean score change (days 5–1)

Significance

−4.9 −14.5 10.4 5.4 5.1 −26.9 −21.2 −9.0 −3.9 −45.5

NS P = 0.03 NS NS NS P = 0.002 P = 0.02 NS NS NS

Patients whose admission resulted in discharge (group 2)

Pain Activity Nausea Depression Anxiety Drowsiness Appetite Well-being Shortness of breath SDS

Mean score day 5 (five days prior to discharge)

Mean score day 1 (one day prior to discharge)

33.7 66.2 15.0 30.8 35.0 37.1 67.2 60.5 27.3 408.0

19.4 59.0 24.2 35.6 37.0 31.8 49.8 45.6 31.9 341.1

Mean score change (day 5 to home) 14.3 7.2 −9.2 −4.8 −2.0 5.3 17.4 14.9 −4.6 59.0

Significance NS NS NS NS NS NS NS NS NS NS


a nonsignificant progressive deterioration in the total SDS until death, primarily because of a significant worsening in activity, drowsiness and appetite scores. In group 2 there was a nonsignificant improvement in the overall score and no significant change in any symptoms, although the improvement in pain scores almost reached statistical significance (P = 0.08). Table 5 shows the mean individual and total scores for the two groups of patients on the day of admission and day prior to death or discharge irrespective of the length of inpatient stay, together with the mean change. In group 1, there was a significant deterioration in activity, drowsiness, appetite and general well-being scores reflected in a significant deterioration in SDS. In group 2, there was a significant improvement in pain scores but no change in any other individual symptom or SDS.

Discussion This study shows a statistically nonsignificant trend towards worsening symptom scores over time in in-

patients on a palliative care ward. We would suggest that the increase in SDS scores in our patients is not due to poor symptom control as such, but represents the general deterioration in the condition of a patient with advanced malignancy who is entering the final stage of their illness. In particular, the worsening SDS scores over the five days preceding death are primarily as a result of the inevitable decrease in activity, appetite and alertness as a patient approaches death (Figure 1). The high scores documented for these symptoms often skewed the total symptom score. This reflects the fact that 46% of the admissions followed in this study ended in death and that the median survival of all patients entered was only 16 days, as is characteristic of the patient population treated in this unit. We would postulate that as a patient’s condition deteriorates, the ESAS becomes an inappropriate means of assessing symptom control (see case history). On the other hand the nonsignificant trend in improved symptom control in the patients who were discharged would perhaps have been significant with a larger group of patients.


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 (day of admission)

Mean score day 1 (one day prior to death)

Mean score change (day of admission to day 1)

Significance

17.8 71.5 21.7 22.4 26.3 52.6 58.9 43.1 36.1 350.4

25.4 96.7 13.6 26.1 31.0 82.1 90.2 72.2 44.1 485.0

7.0 23.9 −10.7 1.0 4.7 27.0 29.3 28.2 4.0 110.0

NS P= NS NS NS P= P= P= NS P=

Mean score day of admission

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

Significance

28.5 67.3 16.7 33.5 30.8 36.9 50.4 54.4 36.0 354.4

19.4 59.0 24.2 35.6 37.0 31.8 49.8 45.6 31.9 341.1

P = 0.03 NS NS NS NS NS NS NS NS NS

10.2 −7.0 7.9 4.4 5.0 −5.0 1.2 −9.4 −2.9 −3.9

0.006

0.0044 0.002 0.003 0.016


As our results are in complete variance to those of Bruera et al.2 who showed an improvement in symptom scores over the first five days of admission, we can only surmise that the patients seen at the Edmonton unit are at an earlier stage of disease or of better performance status. The fact that the mean admission period in Edmonton was three times as long as that seen in this unit and that 84% of patients were able to make their own assessments sometime during admission (as compared with only 63% at best in ours) supports this premise. It also suggests that our admission criteria may vary and that the patient populations under study are different. Bruera et al.2 also states that scores were no longer documented when it became inappropriate but it is not clear how this was defined. VAS are reported as being simple and effective tools which take only a few minutes to complete.3 In our group of patients a number of difficulties became apparent. Patients of poor performance status found the ESAS forms lengthy and many did not have the concentration required to complete them. Many found it difficult to understand the principle of completing a VAS and would write along the line rather than mark it or make some attempt to ‘keep the nurses happy’ (see Figure 2). Several of the

symptoms, e.g. anxiety, drowsiness, depression and general well-being are exceedingly difficult to score in very ill or dying patients, especially in those patients under sedation. In this study, these symptoms were ‘guestimated’ by the nursing staff right up to the time of death. In Bruera et al.’s study,2 these VAS were not completed and it is not clear if these incomplete forms were subsequently excluded from the data analysis. A number of other practical problems were encountered during the study period. Firstly patients were not consistent when completing their chosen symptom VAS (e.g. hiccoughs or constipation) and would change the symptom on a daily basis or would fail to complete the section at all. As a result the extra VAS was not included in the overall analysis. The lack of a VAS for constipation is surprising as this is a particularly common symptom in palliative care patients.4 Some of the patients commented that they did not understand the concept of well-being and found it difficult to score. There were no notable differences in symptom scores in the morning and evening and it is suggested therefore that the forms be completed only once daily at a time most suited to the individual ward routine, a stance also taken by


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Figure 1 A completed ESAS graph

Case history A 60-year-old retired builder diagnosed with a glioblastoma 16 months before was admitted to the palliative care unit from within the hospital with problems of dysphagia and dysphasia. His general condition deteriorated over a week. When he was no longer able to tolerate oral medications he was sedated on a continuous subcutaneous infusion of analgesics and benzodiazepines. He died comfortably 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 problem of using ESAS as a symptom control measure when patients have reached the terminal stage of their disease as it appears that his symptoms are no longer under control, when in fact he remained relatively symptom free.


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

Figure 2

A completed ESAS VAS

Harlos and Dudgeon.5 Patients’ assessments were time consuming for the ward nurses involved due to the time spent explaining the purpose and method of completing the form. Scores were plotted on the master graph by one individual each morning which was also very time consuming. In hindsight this would perhaps have been completed more efficiently by the patient’s individual nurse at the time of assessment. Although not formally assessed, the graph did not tend to influence the day-to-day management of patient care by any members of the multidisciplinary team, but merely confirmed the team’s day-to-day assessment of the patients symptom severity. They were a useful display, however, of patients symptom trends over a period of time (Figure 1). In summary, although ESAS provides a clear display of patients symptoms over time, we have not found it practical for use in our group of patients who have a poor performance status. ESAS would perhaps work better in our group of patients with certain modifications. A convention could be set regarding which way to score certain VAS in sedated patients, for example whether well-being should

be high or low, or even to discontinue assessment in this group of patients. An individualized approach may be a more appropriate method than health related checklists. The ultimate quality of life or symptom assessment tool for palliative care patients is still awaited. Acknowledgement The authors would like to thank the ward nurses who dedicated their time to help run this study and to the members of the South Thames Palliative Care Research Group for their comments.

References 1 Richards MA, Ramirez AJ. Quality of life: the main outcome measure of palliative care. Palliat Med 1997; 11: 89–92. 2 Bruera E, Kuehn N, Miller M, Selmser P, Macmillan K. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care 1991; 7(2): 6–9.


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3 Price DD, McGrath P, Raffi A et al. The validation of a visual analogue scale or ratio scale for pain. Pain 1983; 17: 45–46. 4 Donnelly S, Walsh D. The symptoms of advanced cancer. Semin Oncol. 1995; 22: 67–72.

5 Harlos M, Dudgeon D. The use of the Edmonton Symptom Assessment Tool in determining patterns of symptom control. Abstract from the Canadian Cancer Society Conference, 1995.
