Agreement Between Self-Reported and Proxy-Reported Pain in Veterans With Advanced Heart Failure.
Kathleen M Akgün, Ling Han, Yan Zhan and 2 others
PMID 40741915WHAT IT FOUND
Families accurately reported severe pain in veterans with advanced heart failure, but agreement was poor for mild or moderate pain.
Clinicians should not rely solely on proxy reports to gauge symptom burden or quality of care for less severe pain.
Key findings
01Agreement between patient self-report and family proxy report was only moderate for severe pain and poor to fair for all other pain categories.
02Families reported pain in 3% of patients who had documented no pain, suggesting proxies may overestimate prevalence in asymptomatic patients.
03Agreement was stronger for the last 30 days of life than the last 7 days, possibly because families recall longer timeframes more accurately.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The study relied on nurse-documented NRS scores, which may have been behavioral assessments for patients unable to self-report, rather than true patient-entered data. Family reports were collected asynchronously weeks after the patient's death, meaning grief and memory bias could influence their perception of pain frequency and severity. The sample was almost exclusively men (98%), limiting generalizability to women. The study did not capture the source of pain or how the clinical team responded to it.
Declared interests
The authors declared no potential conflicts of interest.
The easy way to misread this
Do not assume that family-reported pain scores accurately reflect patient experience for mild or moderate pain. Agreement was poor in these categories, so relying on proxy reports alone may lead to either over-treatment of asymptomatic patients or under-recognition of distress in those with moderate symptoms.