Quality of life of persons living with HIV and congruence with surrogate decision-makers

Document Type

Journal Article

Publication Date



Quality of Life Research








Advance care planning; Caregivers; Disability paradox; Health-related quality of life; HIV/AIDS; Medical decision-making


© 2018, Springer Nature Switzerland AG. Purpose: Physicians and caregivers rate patient quality of life (QOL) lower than patients rate their own QOL. This study investigated discrepancies between self-assessments of patient QOL by adults with HIV and their surrogate decision-makers. Methods: We collected baseline data from 223 adult dyads in the FAmily-CEntered (FACE) Advance Care Planning (ACP) clinical trial, consisting of HIV positive patients and their chosen surrogates. Participants independently completed the Medical Outcome Study-HIV Survey (MOS-HIV) and the Palliative care Outcome Scale (POS). We used Wilcoxon Signed-Rank Test to assess differences in overall patient–surrogate means. We used Prevalence Adjusted Bias Adjusted Kappa (PABAK) statistics to assess dyadic agreement, with surrogate HIV status and cohabitation status as grouping variables. Results: Patients were 56.1% male, 86.1% Black/African-American, aged 22–77 (mean = 50.83, SD = ± 12.33). Surrogates were 43.8% male, 84.1% Black/African-American, aged 18–82 (mean = 49.73, SD = ± 14.22). 46.2% of surrogates lived with the patient. 64.6% of surrogates reported negative HIV status. Surrogates were more likely to state patients were ill, p = 0.032. Among patient–surrogate dyads, most QOL assessments showed poor (0.00–0.39) or fair (0.40–0.59) agreement and agreement tended to be even poorer among patient–surrogate dyads where the surrogate had a shared HIV diagnosis. Conclusions: QOL discrepancies are said to arise from healthy surrogates overestimating the effects of chronic illness. In this novel assessment, many surrogates had a shared HIV diagnosis, without increased agreement. These findings highlight the challenge of accurately assessing patient QOL by surrogates, even when there is a shared HIV diagnosis. Improved communication is needed between patients and surrogates about the patients’ representation of illness. National Clinical Trial Number: NCT01775436.