What do symptom scores mean: Observations on discrepancies when defining symptoms using words and numbers

Abstract The Edmonton Symptom Assessment System (ESAS) has become a more frequently used tool for symptom screening in oncology and palliative care settings in Ontario. The process patients use to select symptom scores however is poorly understood. Purpose The purpose of this paper is to consider what patients mean when assigning numbers or words to symptoms, and the implications for healthcare providers who interpret these responses. Methods and sample A previously conducted study in our organization asked four hundred inpatient and ambulatory oncology patients to rank ESAS symptoms with the usual numerical responses (0–10) and then with word phrases of ‘none’, ‘mild’, ‘moderate’, or ‘severe’ to examine the relationship between chosen numbers and words. Key results Although results showed a strong positive correlation between number and word rankings for each ESAS symptom, closer examination revealed that for some patients there were discrepancies between chosen numbers and words, with broad numerical ranges, particularly for the words ‘mild’ and ‘moderate’. Through a secondary analysis, these discrepant responses are explored and relevant literature is presented that highlights the importance of understanding patients as they communicate their symptoms. Conclusions Health care providers need to be aware of the potential for discrepancies when reviewing patient self-reported data. Numbers and words may not fully capture a patient’s symptom burden; further exploration is required to gain a more comprehensive understanding of a patient’s current state of being.