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AIDS Care
Psychological and Socio-medical Aspects of AIDS/HIV
Volume 30, 2018 - Issue sup1: METHODOLOGICAL Considerations
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Articles

Barriers to antiretroviral therapy adherence in developed countries: a qualitative synthesis to develop a conceptual framework for a new patient-reported outcome measure

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Pages 17-28 | Received 27 Sep 2017, Accepted 20 Apr 2018, Published online: 02 May 2018

References

  • Adam, B. D., Maticka-Tyndale, E., & Cohen, J. J. (2003). Adherence practices among people living with HIV. AIDS Care, 15(2), 263–274.
  • Ahmed, S., Ware, P., Gardner, W., Witter, J., Bingham, C. O., Kairy, D., & Bartlett, S. J. (2017). Montreal Accord on Patient-Reported Outcomes (PROs) use series - Paper 8: Patient-reported outcomes in electronic health records can inform clinical and policy decisions. Journal of Clinical Epidemiology, 89, 160–167.
  • Atkins, S., Lewin, S., Smith, H., Engel, M., Fretheim, A., & Volmink, J. (2008). Conducting a meta-ethnography of qualitative literature: Lessons learnt. BMC Medical Research Methodology, 8, 271.
  • Barroso, J., Leblanc, N. M., & Flores, D. (2017). It’s not just the pills: A qualitative meta-synthesis of HIV antiretroviral adherence research. Journal of the Association of Nurses in AIDS Care, 28, 462–478.
  • Barry, M. J., & Edgman-Levitan, S. (2012). Shared decision making -pinnacle of patient-centered care. New England Journal of Medicine, 366(9), 780–781.
  • Bearman, M., & Dawson, P. (2013). Qualitative synthesis and systematic review in health professions education. Medical Education, 47, 252–260.
  • Bolsewicz, K., Debattista, J., Vallely, A., Whittaker, A., & Fitzgerald, L. (2015). Factors associated with antiretroviral treatment uptake and adherence: A review. Perspectives from Australia, Canada, and the United Kingdom. AIDS Care, 27(12), 1429–1438.
  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.
  • Campbell, R., Pound, P., Morgan, M., Daker-White, G., Britten, N., Pill, R., … Donovan, J. (2011). Evaluating meta-ethnography: Systematic analysis and synthesis of qualitative research. Health Technology Assessment, 15(43), 1–164.
  • Chang, C. H. (2007). Patient-reported outcomes measurement and management with innovative methodologies and technologies. Quality of Life Research, 16(suppl.1), 157–166.
  • Concannon, T. W., Fuster, M., Saunders, T., Patel, K., Wong, J. B., Leslie, L. K., & Lau, J. (2014). A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research. Journal of General Internal Medicine, 29(12), 1692–1701.
  • Crocker, L., & Algina, J. (1986). Introduction to classical & modern test theory. Belmont, CA: Wadsworth Group.
  • Engler, K., Lènàrt, A., Lessard, D., Toupin, I., & Lebouché, B. (2017, June). A synthesis of qualitative research with adults living with HIV on barriers to ART adherence. Poster session presented at the 12th international conference on HIV treatment and prevention adherence, Miami, FL.
  • Engler, K., Lessard, D., & Lebouché, B. (2017). A review of HIV-specific patient-reported outcome measures. The Patient - Patient-Centered Outcomes Research, 10(2), 187–202.
  • Engler, K., Lessard, D., Toupin, I., Lènàrt, A., & Lebouché, B. (2017). Engaging stakeholders into an electronic patient-reported outcome development study: On making an HIV-specific e-PRO patient-centered. Health Policy and Technology, 6(1), 59–66.
  • Francis, D. O., McPheeters, M. L., Noud, M., Penson, D. F., & Feurer, I. D. (2016). Checklist to operationalize measurement characteristics of patient-reported outcome measures. Systematic Reviews, 5, 50.
  • Fredericksen, R., Crane, P. K., Tufano, J., Ralston, J., Schmidt, S., Brown, T., … Crane, H. M. (2012). Integrating a web-based, patient-administered assessment into primary care for HIV-infected adults. Journal of AIDS and HIV Research (Online), 4(2), 47–55.
  • Fredericksen, R. J., Edwards, T. C., Merlin, J. S., Gibbons, L. E., Rao, D., Batey, D. S., … Patrick, D. L. (2015). Patient and provider priorities for self-reported domains of HIV clinical care. AIDS Care, 27(10), 1255–1264.
  • Genberg, B. L., Lee, Y., Rogers, W. H., & Wilson, I. B. (2015). Four types of barriers to adherence of antiretroviral therapy are associated with decreased adherence over time. AIDS and Behavior, 19(1), 85–92.
  • Golub, S. A., Indyk, D., & Wainberg, M. L. (2006). Reframing HIV adherence as part of the experience of illness. Social Work in Health Care, 42(3-4), 167–188.
  • Greenhalgh, J. (2009). The applications of PROs in clinical practice: What are they, do they work, and why? Quality of Life Research, 18(1), 115–123.
  • Kalichman, S. C., Kalichman, M. O., & Cherry, C. (2017). Forget about forgetting: Structural barriers and severe non-adherence to antiretroviral therapy. AIDS Care, 29(4), 418–422.
  • Kozak, M. S., Mugavero, M. J., Ye, J., Aban, I., Lawrence, S. T., Nevin, C. R., … Willig, J. H. (2012). Patient reported outcomes in routine care: Advancing data capture for HIV cohort research. Clinical Infectious Diseases, 54(1), 141–147.
  • Laws, M. B., Beach, M. C., Lee, Y., Rogers, W. H., Saha, S., Korthuis, P. T., … Wilson, I. B. (2013). Provider-patient adherence dialogue in HIV care: Results of a multisite study. AIDS and Behavior, 17(1), 148–159.
  • Laws, M. B., Wilson, I. B., Bowser, D. M., & Kerr, S. E. (2000). Taking antiretroviral therapy for HIV infection: Learning from patients’ stories. Journal of General Internal Medicine, 15(12), 848–858.
  • Légaré, F., Boivin, A., van der Weijden, T., Pakenham, C., Burgers, J., Légaré, J., … Gagnon, S. (2011). Patient and public involvement in clinical practice guidelines: A knowledge synthesis of existing programs. Medical Decision Making, 31(6), E45–E74.
  • Locklear, T., Miriovsky, B. J., Willig, J. H., Staman, K., Bhavsar, N., Weinfurt, K., & Abernethy, A. (n.d.). Strategies for overcoming barriers to the implementation of patient-reported outcomes measures, NIH health care systems research collaboratory patient reported outcomes core white paper. Durham, NC: National Institutes of Health Research, Health Care Systems Collaboratory.
  • Mayo, N. E. (2015). ISOQOL dictionary of quality of life and health outcomes measurement (1st ed.). Milwaukee, WI: International Society for Quality of Life Research.
  • McHugh, M. L. (2012). Interrater reliability: The kappa statistic. Biochemia Medica, 22(3), 276–282.
  • Mills, E. J., Nachega, J. B., Buchan, I., Orbinski, J., Attaran, A., Singh, S., … Bangsberg, D. R. (2006). Adherence to antiretroviral therapy in sub-Saharan frica and North America: A meta-analysis. Journal of the American Medical Association, 296(6), 679–690.
  • Moher, D., Liberati, A., Tetzlaff, J., Altman, D. G., & The PRISMA Group. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. PLoS Medicine, 6(7), e1000097.
  • Munro, S. A., Lewin, S. A., Smith, H. J., Engel, M. E., Fretheim, A., & Volmink, J. (2007). Patient adherence to tuberculosis treatment: A systematic review of qualitative research. Plos Medicine, 4(7), 1230–1245.
  • Ortego, C., Huedo-Medina, T. B., Llorca, J., Sevilla, L., Santos, P., Rodríguez, E., … Vejo, J. (2011). Adherence to highly active antiretroviral therapy (HAART): a meta-analysis. AIDS and Behavior, 15(7), 1381–1396.
  • Pope, C., & Mays, N. (1995). Qualitative research: Reaching the parts other methods cannot reach: An introduction to qualitative methods in health and health services research. BMJ, 311(1), 42–45.
  • Pound, P., Britten, N., Morgan, M., Yardley, L., Pope, C., Daker-White, G., & Campbell, R. (2005). Resisting medicines: A synthesis of qualitative studies of medicine taking. Social Science and Medicine, 61(1), 133–155.
  • Puskas, C. M., Kaida, A., Miller, C. L., Zhang, W., Yip, B., Pick, N., … Hogg, R. S. (2017). The adherence gap: A longitudinal examination of men’s and women’s antiretroviral therapy adherence in British Columbia, 2000-2014. Aids (london, England), 31(6), 827–833.
  • Ring, N., Ritchie, K., Mandava, L., & Jepson, R. (2010). A guide to synthesising qualitative research for researchers undertaking health technology assessments and systematic reviews. Retrieved from http://www.nhshealthquality.org/nhsqis/8837.html
  • Roberts, K. J. (2000). Barriers to and facilitators of HIV-positive patients’ adherence to antiretroviral treatment regimens. AIDS Patient Care and STDs, 14(3), 155–168.
  • Roberts, K. J., & Mann, T. (2003). Adherence to antiretroviral medications in HIV/AIDS care: A narrative exploration of one woman’s foray into intentional nonadherence. Health Care for Women International, 24(6), 552–564.
  • Russell, C. K., Bunting, S. M., Graney, M., Hartig, M. T., Kisner, P., & Brown, B. (2003). Factors that influence the medication decision making of persons with HIV/AIDS: A taxonomic exploration. Journal of the Association of Nurses in AIDS Care, 14(4), 46–60.
  • Ryan, G. W., & Wagner, G. J. (2003). Pill taking “routinization”: a critical factor to understanding episodic medication adherence. AIDS Care, 15(6), 795–806.
  • Schonnesson, L. N., Ross, M. W., & Williams, M. (2004). The HIV medication self-reported nonadherence reasons (SNAR) index and its underlying psychological dimensions. AIDS and Behavior, 8(3), 293–301.
  • Shubber, Z., Mills, E. J., Nachega, J. B., Vreeman, R., Freitas, M., Bock, P., … Ford, N. (2016). Patient-reported barriers to adherence to antiretroviral therapy: A systematic review and meta-analysis. PLoS Medicine, 13(11), e1002183.
  • Siefried, K. J., Mao, L., Kerr, S., Cysique, L. A., Gates, T. M., McAllister, J., … PAART study investigators. (2017). Socioeconomic factors explain suboptimal adherence to antiretroviral therapy among HIV-infected Australian adults with viral suppression. Plos One, 12(4), e0174613.
  • Snyder, C. F., Aaronson, N. K., Choucair, A. K., Elliott, T. E., Greenhalgh, J., Halyard, M. Y., … Santana, M. (2012). Implementing patient-reported outcomes assessment in clinical practice: A review of the options and considerations. Quality of Life Research, 21(8), 1305–1314.
  • Suri, H. (2011). Purposeful sampling in qualitative research synthesis. Qualitative Research Journal, 11(2), 63–75.
  • Taylor, B. S., Reyes, E., Levine, E. A., Khan, S. Z., Garduno, L. S., Donastorg, Y., … Hirsch, J. S. (2014). Patterns of geographic mobility predict barriers to engagement in HIV care and antiretroviral treatment adherence. AIDS Patient Care and STDs, 28(6), 284–295.
  • Toupin, I., Engler, K., Lessard, D., Wong, L., Lènàrt, A., Vicente, S., … Lebouché, B. (2018, April). Canadian HIV clinicians’ perception of barriers to antiretroviral therapy (ART) adherence faced by people living with HIV: A qualitative study. Paper presented at the Canadian association for HIV research conference, Vancouver, BC.
  • Truong, W. R., Schafer, J. J., & Short, W. R. (2015). Once-daily, single-tablet regimens for the treatment of HIV-1 infection. Pharmacy and Therapeutics, 40(1), 44–55.
  • U.S. Department of Health and Human Services, Food and Drug Administration Center for Drug Evaluation and Research. (2009). Guidance for industry. Patient-reported outcome measures: use in medical product development to support labeling claims.
  • U.S. Department of Health and Human Services, Panel on Antiretroviral Guidelines for Adults and Adolescents. (2016). Guidelines for the use of antiretroviral agents in HIV-1-infected adults and adolescents. Retrieved from http://www.aidsinfo.nih.gov/ContentFiles/AdultandAdolescentGL.pdf
  • Vervoort, S. C., Borleffs, J. C., Hoepelman, A. I., & Grypdonck, M. H. (2007). Adherence in antiretroviral therapy: A review of qualitative studies. AIDS, 21(3), 271–281.
  • Vervoort, S. C. J. M., Grypdonck, M. H. F., De Grauwe, A., Hoepelman, A. I. M., & Borleffs, J. C. C. (2009). Adherence to HAART: Processes explaining adherence behavior in acceptors and non-acceptors. AIDS Care, 21(4), 431–438.
  • Viswanathan, S., Detels, R., Mehta, S. H., Macatangay, B. J. C., Kirk, G. D., & Jacobson, L. P. (2015). Level of adherence and HIV RNA suppression in the current era of highly active antiretroviral therapy (HAART). AIDS and Behavior, 19(4), 601–611.
  • Walsh, J. C., Horne, R., Dalton, M., Burgess, A. P., & Gazzard, B. G. (2001). Reasons for non-adherence to antiretroviral therapy: Patients’ perspectives provide evidence of multiple causes. AIDS Care, 13(6), 709–720.
  • Warsame, R., & Halyard, M. Y. (2017). Patient-reported outcome measurement in clinical practice: Overcoming challenges to continue progress. Journal of Clinical Pathways, 3(1), 43–46.
  • Wilson, I. B., Laws, M. B., Safren, S. A., Lee, Y., Lu, M., Coady, W., … Rogers, W. H. (2010). Provider-focused intervention increases adherence-related dialogue but does not improve antiretroviral therapy adherence in persons with HIV. Journal of Acquired Immune Deficiency Syndromes, 53(3), 338–347.
  • Witteveen, E., & Van Ameijden, E. J. C. (2002). Drug users and HIV-combination therapy (HAART): factors which impede or facilitate adherence. Substance Use and Misuse, 37(14), 1905–1925.
  • World Economic Situation and Prospects. (2012). Country classification. Retrieved from http://www.un.org/en/development/desa/policy/wesp/wesp_current/2012country_class.pdf
  • World Health Organization. (2003). Adherence to long-term therapies: Evidence for action. Geneva: Author.
  • World Health Organization. (2016). Global health sector strategy on HIV, 2016-2021. Towards ending AIDS. Geneva: Author.