Unroe KT, Ersek M, Stump TE, Floyd A, Nesvet M, Block LVD, Tu W, Cagle JG. Discordance in ratings of symptoms experienced by nursing home residents with cognitive impairment. J Pain Symptom Manage. 2025 Nov 28:S0885-3924(25)00976-5. doi: 10.1016/j.jpainsymman.2025.11.022.
Abstract
Context: Evaluation of palliative care programs in nursing homes often includes symptom assessments. For residents with cognitive impairment, proxy symptom reports, such as those from family members or nursing home staff, may be used as outcome measures.
Objectives: This analysis compares differences between family and staff proxy reports of symptoms of nursing home residents with moderate to severe cognitive impairment. Methods: Data were collected as part of a clinical trial, conducted in 16 nursing homes (NHs) in Indiana and Maryland (U.S.). We calculated the difference in total modified End-of-Life Dementia Comfort Assessment in Dying (EOLD-CAD) scores between family and staff respondents for 194 residents, and quantified characteristics associated with discordance.
Results: About half of responding staff were licensed nurses and 37% were certified nursing assistants. Adult children of residents were the most common (57%) family respondents. There was fair agreement between the respondent groups (kappa = .26) for the total modified EOLD-CAD scale. Overall, family members reported higher symptom burden than staff. Some symptoms, including discomfort, pain, restlessness and agitation, were reported as more burdensome by both groups of proxies vs. symptoms such as gurgling or choking. Proxy symptom reports on residents with more advanced cognitive impairment were less likely to be substantially discordant (OR=.50, 95% CI 0.26, 0.99, p=0.047).
Conclusion: Proxies are often used to report symptom experiences for people living with cognitive impairment. Multiple perspectives may be needed to obtain a fuller picture of symptom burden in this population. Registration: CLINICALTRIALS.GOV: NCT04520698.
Keywords: dementia; nursing home; proxy report; symptoms.
Copyright © 2025. Published by Elsevier Inc.
