Background There has been increasing reliance on caregivers as surrogate decision-makers.
Aim Examine congruence of patients living with HIV and surrogate assessments of patient quality of life in a palliative care setting.
Methods Data were collected from 112 patient-surrogate dyads in the FAmily-Centred (FACE) Advance Care Planning trial from five hospital-based clinics. Participants independently completed the Palliative care Outcome Scale (POS), examining 10 domains of patient’s current status. Patient and surrogate mean scores were compared using paired t-tests; Kappa statistics were calculated to assess agreement (<0.40 poor, 0.40 – 0.75 fair to good, >0.75 excellent).
Results Patients were 44% female; 86% African-American; mean age 51 (range 22–74). Surrogates were 57% female; 84% African-American; mean age 50 (range 18–82). Patients reported significantly higher pain (mean 1.1 v. 0.9, p = 0.0435) and higher family anxiety (mean 0.8 vs. 0.4, p = 0.0007). Kappa statistic was fair (0.4634) for the domain of Wasted Time, but poor for the remaining domains. Although not significant, surrogates reported worse patient outcomes for the domains of Self-worth (mean 0.5 v. 0.6) and Information Received (mean 0.7 v. 0.8). Range: 0 no effect – 4 overwhelming for reported domains.
Discussion/conclusion Previous dyadic studies show surrogates reported worse outcomes for patients; in this study, surrogates reported worse outcomes for patients in only two domains. Interestingly, surrogates reported worse self-worth, similar to a previous dyadic study of HIV positive adults. Poor Kappa statistics across nine of the ten domains suggests poor congruence between patients and their surrogates; however, whose responses were more reliable is unknown.
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