The applicability of the translated Edmonton Symptom Assessment System: revised [ESAS-r] in Swedish palliative care

The relief of symptoms, whether they are physical, psychological, social or existential, or whether the symptom relief promotes well-being, is very important in the care of people who are severely ill or at the end of life. The development of patient-reported outcome measures (PROM) in palliative care is particularly challenging, as patients often suffer from multiple symptoms and are easily fatigued. Great effort is made to develop short and effective measures to meet this challenge. The Edmonton Symptom Assessment System (ESAS) includes numeric rating scales, ranging from 0 to 10, for the assessment of nine symptoms common in patients affected by an advanced cancer, and with the option of adding a possible tenth patient-specific symptom [1]. The instrument is also widely used as a PROM among patients affected by non-malignant diseases in palliative care, and is used in both scientific studies and in clinical practice [2]. ESAS was first translated into Swedish in 1997/1998 (personal communication Prof. Strang, 2015) and has been used in research [3] and in clinical practice. However, there is no official Swedish translation of ESAS available on the developer’s website (http://www.palliative.org/), and several different versions exist in the country, nonetheless, its use is recommended by Swedish national regulatory documents [4,5] and in both local and national guidelines for palliative care. ESAS was revised to the ESAS-r scale in 2011 [6], due to identified concerns about potentially confusing items, and the possibility of unintentionally reversing the scores of some items. Therefore, we decided to translate, culturally adapt and evaluate ESAS-r for use among patients and health care professionals in Sweden.

Method

After receiving permission to translate the ESAS-r into Swedish, we used the European Organization for Research and Treatment of Cancer (EORTC) guidelines for translational and cultural adaptation of the questionnaire [7]. This included independent forward-and-backward translations. At each stage of the translation process, any discrepancies were discussed among two translators (one native English speaker and one native Swedish speaker) and one coordinator, resulting in one translated version being established at each of the two steps. These translations were reviewed and discussed with regards to conceptual, semantic, experiential and content equivalence and one final version for initial testing was agreed upon. This final version was then tested and evaluated by patients and Registered Nurses (RNs) who were accustomed to using the former ESAS in specialized palliative care. This was achieved by conducting structured interviews focusing on each questionnaire item and in relation to the following topics for both patients and nurses: difficult to answer; confusing; difficult to understand; upsetting/offensive; or whether the patient would have asked the question in a different way. We also included questions about: whether the patient had reported a tenth symptom; about the suggestion for the tenth symptom (e.g. constipation); and how the available space provided to write this information was perceived. A final question was posed to the RNs about completing ESAS-r compared to the previous ESAS. The study was approved by The Regional Ethical Committee at Karolinska Institutet, dnr: 2010/1490-31/3; 2013/1346-32; 2014/961-32. All patients were given both written and verbal information, and in turn provided informed consent.

Results

Five RNs interviewed 13 patients. None of the questions relating to the symptoms included in the Swedish version of ESAS-r were found to be: difficult to answer; confusing; difficult to understand or upsetting/offensive. There were no suggestions made to formulate the items in alternative ways. Nine of the participating patients (9/13) reported an additional tenth symptom or problem (e.g.: dizziness; sleeping problems; stomach problems; and diarrhea). Five patients (5/13) found the given example for a tenth symptom (e.g. constipation) to be helpful; five (5/13) found it to be too directive; and three (3/13) said that it was of no help. Some patients found the space provided for writing to be enough (6/13), while others found it to be small or too small (6/13). Both RNs and patients found the revised ESAS easier to understand compared to the former ESAS. The direction of the ratings indicating appetite had been reversed, and this was noted and appreciated by both RNs and patients. For this item an explanation for the direction of answers was included to enhance linguistic understanding. The included body figure was appreciated for aiding the visualization of pain and skin problems.

Discussion

In conducting this translation, including a face-validity and feasibility study, we found that the translated Swedish ESAS-r was well accepted by patients and RNs in specialized palliative care. The revised questionnaire, the additional explanation provided for some items and the explanation relating to the appetite scale that was included in the Swedish version to clarify the direction of answers, and the body chart, were all found to be helpful compared to the former ESAS. The ESAS-r does not cover all symptoms experienced by patients in palliative care, as shown by the variety of suggestions indicating a tenth individual problem. The present study also shows that some patients found that the space provided to write was too small. This issue must be taken in consideration when guiding patients to respond to the instrument. ESAS-r offers a way to identify, diagnose and follow patient-reported subjective symptoms and individual problems. In clinical practice, it can be used as a means to open up a dialog with the patient about symptoms and distress. The main focus in systematic symptom assessment must be to utilize a uniform scale that is reliable and valid. However, it is imperative that those who employ the tool have expertise in its use and that this should go beyond only having knowledge relating to the included symptoms and instead extend to discussing and gathering further information on these symptoms and potential others. The use of the Swedish version of ESAS-r should be promoted within relevant health care settings, along with the appropriate information, training and designated responsibility for the implementation process [8]. We also suggest that the ESAS-r is available for retrieval from the websites of one or few palliative care research centers, to prevent unwarranted modifications to the instrument and for the potential to make contributions to future revisions if needed. An important observation to highlight to users familiar with the former Swedish version of the ESAS, and with digital registration, is the revised order of symptoms and placement of the anchors for the answers which must be taken into consideration when registering and analyzing scores. Further studies should highlight possible need for modification originating from particular groups of patients. The Swedish version of ESAS-r is now available to retrieve from http://palliativtutvecklingscentrum.se/

Acknowledgments

The authors thank the participating patients and Registered Nurses: Birgitta Wiklund, Anna Morling Lundqvist, Irené Larsson Dåderman, Anna Dunberger and Mikaela Lukas at the Palliative Care Service at Stockholms Sjukhem Foundation for their facilitation of this research, and Aileen Ireland for language support.

Disclosure statement

The authors report no conflicts of interest.