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P-106 Palliative care outcome congruence in HIV positive adults and their surrogate decision-makers
  1. Alison L Kimmel1,
  2. YI Cheng1,
  3. J Wang1,2 and
  4. ME Lyon1,2
  1. 1Children’s National, Children’s Research Institute/Center for Translational Science, District of Columbia, USA
  2. 2The George Washington University School of Medicine and Health Sciences, District of Columbia, USA

Abstract

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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