A comparison of patient and proxy symptom assessments in advanced cancer patients

Abstract

The purpose of this study was to compare patient and proxy (physician and nurse) assessments of symptoms in advanced cancer patients. The sample consisted of 49 patients with advanced cancer admitted to an acute palliative care unit. Three independent assessments were completed for each patient on two occasions within 11 days of admission. On each occasion, symptoms were rated independently by the patient and two proxies (treating physician and nurse), using the Edmonton Symptom Assessment System (ESAS). The ESAS is a nine-item visual analogue scale (VAS) for assessing pain, activity, nausea, depression, anxiety, drowsiness, appetite, well-being and shortness of breath. Symptom ratings were compared using a repeated-measures ANOVA procedure and correlations. Average physician ratings were generally lower than average patient ratings for both occasions. Average nurse ratings agreed more closely with patient ratings, with a trend towards lower ratings on occasion 1 and higher ratings on occasion 2. There was a significant rater (person rating the effects) effect (P < 0.01) for three of the nine symptoms: physicians rated drowsiness, shortness of breath and pain significantly lower than patients. For drowsiness and shortness of breath, these differences were clinically relevant, representing a difference of more than 12 mm on a 100-mm VAS. The accuracy of assessments amongst those rating the symptoms did not improve over time. Proxy assessments of symptom intensity, particularly by physicians, were significantly lower than patient assessments for three of the nine symptoms. Further research regarding the reliability of patient and proxy assessments is needed to assess and manage symptoms in advanced cancer effectively.

Exploring the Challenges of Implementing the Edmonton Symptom Assessment Scale in a Specialist Palliative Care Unit

“…However, many studies show that proxy ratings of patient's symptoms are not a consistently accurate reflection of patient distress. Nekolaichuk et al [17] demonstrated that whereas nursing staff can often assign symptom scores that are similar to patient scores, Physicians often assign scores that are lower than patients own ratings for their symptoms [18]. In another study, Pautex et al [19] reported that Physician and Nurse Assessments of patient symptom scores were similar; however both differed from patient ratings.…”

A Review of the Reliability and Validity of the Edmonton Symptom Assessment System

“…Lower correlations were apparent for subjective items of anxiety, depression, and well-being. Correlation coefficients for physician-or-patient ratings were weakest for activity (0.33), depression (0.45), and well-being (0.44) 20 ; for nurse-or-patient ratings, coefficients were weaker overall, with 0.35 for activity, 0.37 for depression, and 0.23 for well-being. Interestingly, proxy scores did not converge with patient self-scores over 2 weeks of follow-up.…”

“…More than 130 relevant articles and abstracts were identified, of which thirty-nine were primary studies published as complete peer-reviewed papers, representing 25 different institutions. Of the thirty-nine papers, thirteen were from Canada 6,11,[20][21][22][23][24][25][26][27][28][29][30] ; eight were from the United States [12][13][14]18,[31][32][33][34] ; eight were from Scandinavia (Sweden 15,[35][36][37] , Denmark [38][39] , Norway 40 , Finland 16 ); two were from Western Europe (Netherlands 41 , United Kingdom 42 ); five were from southern Europe (Switzerland 43 , Italy 17,[44][45][46] ); two were from Australia 47,48 ; and one was from Asia 49 .…”

Symptom Experience in the Last Year of Life Among Individuals with Cancer

“…Proxy interviews are administered to caregivers of individuals nearing end of life, to relieve the respondent burden for those who are terminally ill (8,9). Proxy reports have been shown to be quite accurate for observable symptoms such as vomiting; however, the agreement between self and proxy reporting has been shown to be unreliable for symptoms that are less observable, such as pain or depression (8).…”