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Data presented previously in abstract form at the 2016 Annual Conference for the Society of Clinical Research Associates in Montreal, Canada and the 2017 Advance Care Planning and End of Life Care Annual Conference in Alberta, Canada. Data have not been published previously.
Our study sites were: Children’s National Health System, MedStar Health Research Institute/Washington Hospital Center, MedStar Georgetown University Hospital, The George Washington Medical Faculty Associates and the Washington DC Veterans Affairs Medical Center/Institute for Clinical Research, Inc.
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.
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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
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
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
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
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. CrossRef
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
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. CrossRef
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
Hammes, B. J., & Briggs, L. (2007). Respecting choices: Advance care planning facilitator manual-revised. La Crosse: Gundersen Lutheran Medical Foundation.
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. CrossRefPubMedPubMedCentral
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.
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
SAS Institute Inc. (2008). SAS® 9.2 enhanced logging facilities. Cary: SAS Institute Inc.
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
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
Holt-Lunstad, J., Smith, T. B., & Layton, J. B. (2010). Social relationships and mortality risk: A meta-analytic review. PLoS Med, 7(7), 1–20. https://doi.org/10.1371/journal.pmed.1000316. CrossRef
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.
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
- Quality of life of persons living with HIV and congruence with surrogate decision-makers
Katherine B. Curtin
Yao I. Cheng
Rachel K. Scott
Debra A. Benator
Maureen E. Lyon
for the Palliative Care Consortiums
- Springer International Publishing