Swipe om te navigeren naar een ander artikel
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.
Log in om toegang te krijgen
Met onderstaand(e) abonnement(en) heeft u direct toegang:
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
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. CrossRef
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
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. CrossRef
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. CrossRef
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. CrossRef
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. 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
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. CrossRef
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. CrossRef
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. CrossRef
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. 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
Mercurio, M. R. (2007). An adolescent’s refusal of medical treatment: Implications of the Abraham Cheerix case. Pediatrics, 120, 1357–1358. CrossRef
Fins, J., & Schiff, N. (2005). In brief: The afterlife of Terri Schiavo. The Hastings Center Report, 35, 8. CrossRef
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. CrossRef
Hammes, B. J., Klevan, J., Kempf, M., & Williams, M. S. (2005). Pediatric advance care planning. Journal of Palliative Medicine, 8, 766–773. 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.
O’Connor, A. M. (1995). Validation of a decisional conflict scale. Medical Decision Making, 15(1), 25–30. CrossRef
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. CrossRef
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. CrossRef
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. CrossRef
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
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. 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. CrossRef
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
- Quality of Life Research
An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation - Official Journal of the International Society of Quality of Life Research
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649