Quality of Life Research

, Volume 28, Issue 1, pp 47–56 | Cite as

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

  • Katherine B. CurtinEmail author
  • Yao I. Cheng
  • Jichuan Wang
  • Rachel K. Scott
  • Leah Squires
  • Debra A. Benator
  • Maureen E. Lyon
  • for the Palliative Care Consortiums



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.


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.


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.


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.


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



We thank the study participants for their contributions to the success of this study.


This research is supported by the National Institute of Nursing Research at the National Institute of Health Award Number R01NR014-052-05; National Institute of Health National Center for Advancing Translational Sciences CTSI-CN UL1RR031988. These institutions were not involved in the present analysis, the interpretation of the data, the writing of the manuscript, or the decision to submit for publication. This content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of Nursing Research or the National Institute of Health.

Compliance with ethical standards

Conflict of interest

The authors declare there are no conflicts of interest to report.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This research was approved by the IRB at Children’s National (coordinating center) and at all participating study sites. The Children’s National Medical Center IRB’s Federal Wide Assurance (FWA) number is FWA00004487. The institutional organization number is IORG0000245.

Informed consent

Informed consent was obtained from all individual participants included in the study.


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Copyright information

© Springer Nature Switzerland AG 2018

Authors and Affiliations

  • Katherine B. Curtin
    • 1
    • 8
    Email author
  • Yao I. Cheng
    • 1
  • Jichuan Wang
    • 1
    • 2
  • Rachel K. Scott
    • 3
  • Leah Squires
    • 4
    • 5
  • Debra A. Benator
    • 6
    • 7
  • Maureen E. Lyon
    • 1
    • 2
  • for the Palliative Care Consortiums
  1. 1.Children’s National Health SystemChildren’s Research Institute, Center for Translational ScienceWashingtonUSA
  2. 2.The George Washington School of Medicine and Health SciencesWashingtonUSA
  3. 3.Medstar Health Research Institute/Washington Hospital CenterWashingtonUSA
  4. 4.Department of PsychologyThe George Washington UniversityWashingtonUSA
  5. 5.Psychology ServiceDC Veterans Affairs Medical CenterWashingtonUSA
  6. 6.Division of Infectious Diseases SectionThe George Washington University Medical CenterWashingtonUSA
  7. 7.Infectious Diseases SectionVeterans Affairs Medical CenterWashingtonUSA
  8. 8.Department of Somatic PsychologyCalifornia Institute of Integral StudiesSan FranciscoUSA

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