Skip to main content
Bohn Stafleu van Loghum
ZOEKEN
MENU 1 2 3 4
Top

Tip

Swipe om te navigeren naar een ander artikel

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

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail
    Link delen
publish
Publiceer nu

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.
vorige artikel Changes and determinants of health-related quality of life among people newly diagnosed with HIV in China: a 1-year follow-up study
volgende artikel Psychosocial predictors of quality of life among South Africa adolescents receiving antiretroviral therapy
Literatuur
1.
Schouten, J., Ferdinand, W. W., Stolte, I. G., Kootstra, N., van der Valk, M., & Geerlings, S. G. (2014). Cross-sectional comparison of the prevalence of age-associated comorbidities and their risk factors between HIV-infected and uninfected individuals: The AGE IV cohort study. Clinical Infectious Diseases. https://​doi.​org/​10.​1093/​cid/​ciu701. CrossRefPubMed
2.
Henderson, W. A., Schlenk, E. A., Kim, K. H., Hadigan, C. M., Martino, A. C., & Sereika, S. M. (2010). Validation of the MOS-HIV as a measure of health-related quality of life in persons living with HIV and liver disease. AIDS Care, 22(4), 483–490. CrossRefPubMed
3.
Wegner, N. S., Kanouse, D. E., Collins, R. L., Liu, H., Schuster, M. A., & Gifford, A. L. (2001). End-of-life discussions and preferences among persons with HIV. JAMA, 285(22), 2880–2890. CrossRef
4.
Ubel, P. A., Schwarz, N., Loewenstein, G., & Smith, D. (2005). Misimagining the unimaginable: The disability paradox and health care decision making. Health Psychology, 24(4S), S57–S62. CrossRefPubMed
5.
Krug, R., Karus, D., Selwyn, P. A., & Raveis, V. H. (2010). Late-stage HIV/AIDS patients’ and their familial caregivers’ agreement on the palliative care outcome scale. Journal of Pain and Symptom Management, 39(1), 23–32. CrossRefPubMed
6.
Higginson, I. J., & Gao, W. (2008). Caregiver assessment of patients with advanced cancer: Concordance with patients, effect of burden and positivity. Health and Quality of Life Outcomes, 6(1), 42–49. CrossRefPubMed
7.
Li, Y., & Rapkin, B. (2009). Classification and regression tree uncovered hierarchy of psychosocial determinants underlying quality-of-life response shift in HIV/AIDS. Journal of Clinical Epidemiology, 62(11), 1138–1147. CrossRefPubMed
8.
Albrecht, G. L., & Devlieger, P. J. (1999). The disability paradox: High quality of life against all odds. Social Science & Medicine, 48(8), 977–988. CrossRef
9.
Carona, C., Pereira, M., Moreira, H., Silva, N., & Canavarro, M. C. (2013). The disability paradox revisited: Quality of life and family caregiving in pediatric cerebral palsy. Journal of Child and Family Studies, 22(7), 971–986. CrossRef
10.
Thompson, W. W., Zack, M. M., Krahn, G. L., Andresen, E. M., & Barile, J. P. (2012). Health-related quality of life among older adults with and without functional limitations. American Journal of Public Health, 102(3), 496–502. CrossRefPubMedPubMedCentral
11.
Folkman, S., & Greer, S. (2000). Promoting psychological well-being in the face of serious illness: When theory, research and practice inform each other. Psychooncology, 9(1), 11–19. CrossRefPubMed
12.
Thompson, S. C., Sobolew-Shubin, A., Galbraith, M. E., Schwankovsky, L., & Cruzen, D. (1993). Maintaining perceptions of control: Finding perceived control in low-control circumstances. Journal of Personality and Social Psychology, 64(2), 293–304. CrossRefPubMed
13.
Tarakeshwar, N., Vanderwerker, L. C., Paulk, E., Pearce, M. J., Kasl, S. V., & Prigerson, H. G. (2006). Religious coping is associated with the quality of life of patients with advanced cancer. Journal of Palliative Medicine, 9(3), 646–657. CrossRefPubMed
14.
Pargament, K. I., Koenig, H. G., Tarakeshwar, N., & Hahn, J. (2001). Religious struggle as a predictor of mortality among medically ill elderly patients. Archives of Internal Medicine, 161(15), 1881–1885. CrossRefPubMed
15.
Lee, C. C., Czaja, S. J., & Schulz, R. (2010). The moderating influence of demographic characteristics, social support, and religious coping on the effectiveness of a multicomponent psychosocial caregiver intervention in three racial ethnic groups. Journals of Gerontology Series B, Psychological Sciences and Social Sciences. 65B(2),185–194. CrossRef
16.
Pargament, K. I., Koenig, H. G., Tarakeshwar, N., & Hahn, J. (2004). Religious coping methods as predictors of psychological, physical and spiritual outcomes among medically ill elderly patients: A two-year longitudinal study. Journal of Health Psychology, 9(6), 713–730. CrossRefPubMed
17.
Mercurio, M. R. (2007). An adolescent’s refusal of medical treatment: Implications of the Abraham Cheerix case. Pediatrics, 120, 1357–1358. CrossRefPubMed
18.
Fins, J., & Schiff, N. (2005). In brief: The afterlife of Terri Schiavo. The Hastings Center Report, 35, 8. CrossRefPubMed
19.
Wijngaards-de Meij, L., Stroebe, M., & Schut, H. (2008). Parents grieving the loss of their child: Interdependence in coping. British Journal of Clinical Psychology, 47(1), 31–42. CrossRefPubMed
20.
Hammes, B. J., Klevan, J., Kempf, M., & Williams, M. S. (2005). Pediatric advance care planning. Journal of Palliative Medicine, 8, 766–773. CrossRefPubMed
21.
Wissow, L. S., Hutton, N., & Kass, N. (2001). Preliminary study of a values-history advance directive interview in a pediatric HIV clinic. Journal of Clinical Ethics, 12(2), 161–172. PubMed
22.
Hammes, B. J., & Briggs, L. (2007). Respecting choices: Advance care planning facilitator manual-revised. La Crosse: Gundersen Lutheran Medical Foundation.
23.
O’Connor, A. M. (1995). Validation of a decisional conflict scale. Medical Decision Making, 15(1), 25–30. CrossRefPubMed
24.
Curtis, J. R., Patrick, D. L., Caldwell, E., Greenlee, H., & Collier, A. C. (1999). The quality of patient-doctor communication about end-of-life care: A study of patients with advanced AIDS and their primary care clinicians. AIDS, 13(9), 1123–1131. CrossRefPubMed
25.
Kimmel, A. L., Wang, J., Scott, R., Briggs, L., & Lyon, M. E. (2015). FAmily CEntered (FACE) advance care planning: Study design and methods for a patient-centered communication and decision-making intervention for patients with HIV/AIDS and their surrogate decision-makers. Contemporary Clinical Trials, 43(1), 172–178. CrossRefPubMed
26.
Wu, A. W., Revicki, D. A., Jacobson, D., & Malitz, F. E. (1997). Evidence for reliability, validity and usefulness of the Medical Outcomes Study HIV Health Survey (MOS-HIV). Quality of Life Research, 6(6), 481–493. CrossRefPubMed
27.
Aspinal, F., Hughes, R., Higginson, I., Chidgey, J., Drescher, U., & Thompson, M. (2002). A user’s guide to the Palliative care Outcome Scale (p. 10). London: Palliative Care and Policy Publications.
28.
Hearn, J., & Higginson, I. J. (1999). Development and validation of a core outcome measure for palliative care: The Palliative care Outcome Scale. Palliative Care Core Audit Project Advisory Group. British Medical Journal of Quality & Safety, 8(4), 219–227. CrossRef
29.
SAS Institute Inc. (2008). SAS® 9.2 enhanced logging facilities. Cary: SAS Institute Inc.
30.
Cicchetti, D. V. (1994). Guidelines, criteria, and rules of thumb for evaluating normed and standardized assessment instruments in psychology. Psychological Assessment, 6, 284–290. CrossRef
31.
Drum, C. E., Horner-Johnson, W., & Krahn, G. L. (2008). Self-rated health and health days: Examining the “disability paradox”. Disability and Health Journal, 1(2), 71–78. CrossRefPubMed
32.
Graham, C. D., Weinman, J., Sadjadi, R., Chalder, T., Petty, R., & Hanna, M. G. (2014). A multicentre postal survey investigating the contribution of illness perceptions, coping and optimism to quality of life and mood in adults with muscle disease. Clinical Rehabilitation, 28(5), 508–519. CrossRefPubMed
33.
34.
35.
Lyon, M. E., Squires, L., D’Angelo, L., Benator, D., Scott, R., Tanjutco, P., et al. (2017, September 6–8). Advance care planning needs of persons living with HIV/AIDS in Washington, DC: A racial comparison. In Poster 6th international advance care planning end of life conference, Banff, Alberta.
36.
37.
Song, M. K., Ward, S. E., Denne, H., Happ, M. B., Piraino, B., Donovan, H. S., et al. (2009). Randomized controlled trial of SPIRIT: An effective approach to preparing African-American dialysis patients and families for end-of-life. Research in Nursing & Health, 32(3), 260–273. CrossRef
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

Andere artikelen Uitgave 1/2019

Quality of Life Research 1/2019 Naar de uitgave

Review

A systematic review of utility values in children with cerebral palsy

Brief Communication

Normative values for the distress thermometer (DT) and the emotion thermometers (ET), derived from a German general population sample

OriginalPaper

The prognostic value of health-related quality of life in patients with Chagas heart disease

OriginalPaper

Development and content validity of a hemodialysis symptom patient-reported outcome measure

OriginalPaper

Primary dysmenorrhea with and without premenstrual syndrome: variation in quality of life over menstrual phases

Review

Effects of caregiver-involved interventions on the quality of life of children and adolescents with chronic conditions and their caregivers: a systematic review and meta-analysis