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


OBJECTIVE
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
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.


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.
Palliative Care Consult Team, Sunnybrook Health Sciences Centre, 2075 Bayview Avenue, Toronto, Ontario, Canada M4N 3M5.
Ashlinder
A
Gill
Patricia
P
Daines
Debbie
D
Selby
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D005260:Female; D006801:Humans; D008297:Male; D008403:Mass Screening / Q000379:methods; D008433:Mathematics; D008875:Middle Aged; D009369:Neoplasms / Q000150:complications / Q000451:nursing / Q000523:psychology*; D009730:Nursing Assessment / Q000379:methods*; D015403:Nursing Evaluation Research; D015404:Nursing Methodology Research; D009859:Oncology Nursing; D009864:Ontario; D011446:Prospective Studies; D057566:Self Report / Q000592:standards*; D012660:Semantics; D012720:Severity of Illness Index; D018709:Statistics, Nonparametric