Abstract
OBJECTIVE: To describe how people with HIV understand and experience the problem of adhering to antiretroviral medication regimens.
DESIGN: We performed a qualitative study based on interviews with HIV-infected patients, including 46 clients of AIDS service organizations, who were sampled according to age, ethnicity, and injection drug use history, and a convenience sample of 15 patients. Interviews were conducted in English or Spanish and were audiotaped and transcribed.
PARTICIPANTS: Of 52 respondents who had prescriptions for antiretroviral therapy, 25 were randomly selected for indepth analysis. Of these, 5 reported having an AIDS diagnosis, 15 reported symptoms they attributed to HIV, and 5 reported having no symptoms of HIV disease.
MEASUREMENTS AND MAIN RESULTS: Investigators prepared structured abstracts of interviews to extract adherence-related data. One investigator compared the abstracts with the original transcripts to confirm the interpretations, and used the abstracts to organize and classify the findings. Most subjects (84%) reported recent nonadherent behavior, including ceasing treatment, medication “holidays,” sleeping through doses, forgetting doses, skipping doses due to side effects, and following highly asymmetric schedules. Initially, most reported that they were not significantly nonadherent, and many did not consider their behavior nonadherent. Only a minority clearly understood the possible consequences of missing doses. Most said they had not discussed their nonadherence with their physicians.
CONCLUSIONS: Many people rationalize their difficulty in adhering to HIV treatment by deciding that the standard of adherence they can readily achieve is appropriate. Physicians should inquire about adherence-related behavior in specific detail, and ensure that patients understand the consequences of not meeting an appropriate standard.
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References
Palella FJJ, Delaney KM, Moorman AC, et al. Declining morbidity and mortality among patients with advanced human immunodeficiency virus infection. HIV Outpatient Study Investigators. N Engl J Med. 1998;338:853–60.
Carpenter CC, Fischl MA, Hammer SM, et al. Antiretroviral therapy for HIV infection in 1998: updated recommendations of the International AIDS Society-USA Panel. JAMA. 1998;280:78–86.
Feinberg MB, Carpenter C, Fauci AS, et al. Report of the NIH Panel to Define Principles of Therapy of HIV Infection and guidelines for the use of antiretroviral agents in HIV-infected adults and adolescents. Ann Intern Med. 1998;128:1057–110.
Paterson D, Seindels S, Mohr J, et al. How much adherence is enough? A prospective study of adherence to protease inhibitor therapy using MEMS Caps. Presented at the 6th Conference on Retroviruses and Opportunistic Infections; Jan 31-Feb 4, 1999. Washington, DC.
Bangsberg DR, Hecht FM, Charlebois EC, et al. Spontaneous adherence (ADH) audits (SAA) predict viral suppression in the REACH Cohort, Presented at the 6th Conference on Retroviruses and Opportunistic Infections; Jan 31-Feb 4, 1999. Washington, DC.
Demasi R, Tolson J, Pham S, et al Self-reported adherence to HAART and correlation with HIV RNA: initial results with the Patient Medication Adherence Questionnaire. Presented at the 6th Conference on Retroviruses and Opportunistic Infections; Jan 31-Feb 4, 1999. Washington, DC.
Hecht FM, Grant RM, Petropoulos CJ, et al. Sexual Transmission of an HIV-1 variant resistant to multiple reverse-transcriptase and protease inhibitors. N Engl J Med. 1998;339:307–11.
Hirsch MS, Conway B, D’Aquila RT, et al. Antiretroviral drug resistance testing in adults with HIV infection: implications for clinical management. International AIDS Society-USA Panel. JAMA. 1998;279:1984–91.
Samet JH, Libman H, Steger KA, et al. Compliance with zidovudine therapy in patients infected with human immunodeficiency virus type I: a cross-sectional study in a municipal hospital clinic. Am J Med. 1992;92:495–502.
Broers B, Morabia A, Hirschel B. A cohort study of drug users’ compliance with zidovudine treatment. Arch Intern Med. 1994;154:1121–7.
Morse EV, Simon PM, Coburn M, Hyslop N, Greenspan D, Balson PM. Determinants of subject compliance within an experimental anti-HIV drug protocol. Soc Sci Med. 1991;32:1161–7.
Ferrando SJ, Wall TL, Bakti SL, Sorenson JL. Psychiatric morbidity, illicit drug use and adherence to zidovudine (AZT) among injection drug users with HIV disease. Am J Drug Alcohol Abuse. 1996;22:475–87.
Eldred LH, Wu AW, Chaisson RE, Moore RD. Adherence to antiretroviral and pneumocystis prophylaxis in HIV disease. J Acquir Immune Defic Syndr Hum Retrovirol. 1998;18:117–25.
Stall R, Hoff C, Coates TJ, et al. Decisions to get HIV tested and to accept antiretroviral therapies among gay/bisexual men: implications for secondary prevention efforts. J Acquir Immune Defic Syndr Hum Retrovirol. 1996;11:151–60.
Lerner BH, Gulick RM, Dubler NN. Rethinking nonadherence: historical perspectives on triple-drug therapy for HIV disease. Ann Intern Med. 1999;14:53.
Bangsberg D, Tulsky JP, Hecht FM, Moss AR. Protease inhibitors in the homeless. JAMA. 1997;278:63–5.
Altice FL, Friedland GH. The era of adherence to HIV therapy. Ann Intern Med. 1998;129:503–5. Editorial.
Wainberg MA, Friedland G. Public health implications of antiretroviral therapy and HIV drug resistance. JAMA. 1998;279:1977–83.
Rand CS, Weeks K. Measuring adherence with medication regimens in clinical care and research. In: Shumaker SA, Schron EB, Ockene JK, McBee WL, eds. The Handbook of Health Behavior Change. 2nd ed. New York: Springer Publishing Company, Inc.; 1998: 114–32.
Miles MB, Huberman MA. Qualitative Data Analysis: A Sourcebook of New Methods. Newbury Park, Calif: Sage Publications; 1984: 15.
Curtis JR, Patrick DL. Barriers to communication about end of life care in AIDS patients. J Gen Intern Med. 1997;12:736–41.
Wilson IB. End-of-life care and HIV disease: let’s talk. J Gen Intern Med. 1997;12:784–6.
Tsevat J, Sherman SN, McElwee JA, et al. The will to live among HIV-infected patients. Ann Intern Med. 1999;131:194–8.
Massachusetts AIDS Surveillance Program. Metropolitan area statistical data. Massachusetts Department of Public Health. January 1998.
Degner LF, Sloan JF. Decision making during serious illness: what role do patients really want to play? J Clin Epidemiol. 1992;45:944–50.
Caron HS. Compliance: the case for objective measurement. J Hypertens Suppl. 1985;3:S11–7.
Bradburn NM. Response effects. In: Rossi D, Wright JD, Anderson AB, eds. Handbook of Survey Research. San Diego, Calif: Academic Press; 1983.
Johnson SB. Methodological issues in diabetes research. Measuring adherence. Diabetes Care. 1992;15:1658–67.
Laws MB. Choice or Chance: Treatment Decision Making by People with HIV in Massachusetts. Boston: Latino Health Institute; 1999.
Glaser B, Strauss AL. The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago: Aldine; 1967.
Massachusetts Department of Public Health. Massachusetts AIDS Surveillance Monthly Update. April 1999.
Mar-Tang M, Noonan C, Ballard C, et al. Early adherence pattern and virologic outcomes after initiation or change of antiretroviral therapy. J Gen Intern Med. 1999;14:53. Abstract.
Stone VE, Clarke J, Lovell J, et al. HIV/AIDS patients’ perspectives on adhering to regimens containing protease inhibitors. J Gen Intern Med. 1998;13:586–93.
Conrad P. The meaning of medications: another look at compliance. Soc Sci Med. 1985;20:29–37.
Steele DJ, Jackson TC, Gutmann MC. Have you been taking your pills? The adherence-monitoring sequence in the medical interview. J Fam Pract. 1990;30:294–9.
Golin C, Kaplan A, Liu HH, et al. Patient factors associated with and self-reported reasons for nonadherence to antiretroviral therapy. J Gen Intern Med. 1999;14:32. Abstract.
Gifford AL, Bormann JE, Shively MJ, Wright BC, Richman DD, Bozzette SA. The influence of social, psychological and clinical factors on antiretroviral medication adherence and plasma HIV levels. J Gen Intern Med. 1994;14:32. Abstract.
Wenger N, Gifford A, Liu H, et al. Patient characteristics and attitudes associated with antiretroviral (AR) adherence. Presented at the 6th Conference on Retroviruses and Opportunistic Infections; Jan 31-Feb 4, 1999. Washington, DC.
Becker M, Maiman L. Sociobehavioral determinants of compliance with health and medical care recommendations. Med Care. 1975;13:10–24.
Bandura A. Social Foundations of Thought and Action. Englewood Cliffs, NJ: Prentice-Hall; 1986.
Bandura A. Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev. 1977;94:191–215.
Prochaska JO, DiClemente CC. Stage of change in the modification of problem behaviors. In: Hersn M, Eisler RM, Miller PM, eds. Progress in Behavior Modification. Newbury Park, Calif: Sage; 1992.
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This work was supported by a contract with the Massachusetts Department of Public Health.
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Laws, M.B., Wilson, I.B., Bowser, D.M. et al. Taking antiretroviral therapy for HIV infection. J GEN INTERN MED 15, 848–858 (2000). https://doi.org/10.1046/j.1525-1497.2000.90732.x
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DOI: https://doi.org/10.1046/j.1525-1497.2000.90732.x