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Gepubliceerd in: Quality of Life Research 1/2019

15-09-2018

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

Auteurs: Katherine B. Curtin, Yao I. Cheng, Jichuan Wang, Rachel K. Scott, Leah Squires, Debra A. Benator, Maureen E. Lyon, for the Palliative Care Consortiums

Gepubliceerd in: Quality of Life Research | Uitgave 1/2019

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Abstract

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.

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Metagegevens
Titel
Quality of life of persons living with HIV and congruence with surrogate decision-makers
Auteurs
Katherine B. Curtin
Yao I. Cheng
Jichuan Wang
Rachel K. Scott
Leah Squires
Debra A. Benator
Maureen E. Lyon
for the Palliative Care Consortiums
Publicatiedatum
15-09-2018
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 1/2019
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-018-2002-5