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Beyond Social Desirability Bias: Investigating Inconsistencies in Self-Reported HIV Testing and Treatment Behaviors Among HIV-Positive Adults in North West Province, South Africa

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Abstract

This mixed-methods study used qualitative interviews to explore discrepancies between self-reported HIV care and treatment-related behaviors and the presence of antiretroviral medications (ARVs) in a population-based survey in South Africa. ARV analytes were identified among 18% of those reporting HIV-negative status and 18% of those reporting not being on ART. Among participants reporting diagnosis over a year prior, 19% reported multiple HIV tests in the past year. Qualitative results indicated that participant misunderstandings about their care and treatment played a substantial role in reporting inaccuracies. Participants conflated the term HIV test with CD4 and viral load testing, and confusion with terminology was compounded by recall difficulties. Data entry errors likely also played a role. Frequent discrepancies between biomarkers and self-reported data were more likely due to poor understanding of care and treatment and biomedical terminology than intentional misreporting. Results indicate a need for improving patient-provider communication, in addition to incorporating objective measures of treatment and care behaviors such as ARV analytes, to reduce inaccuracies.

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References

  1. Joint United Nations Programme on HIV/AIDS, Joint United Nations Programme on HIV/Aids. 90-90-90: an ambitious treatment target to help end the AIDS epidemic. Geneva: UNAIDS;2014.

  2. Cowan FM, Davey CB, Fearon E, Mushati P, Dirawo J, Cambiano V, et al. The HIV care cascade among female sex workers in Zimbabwe: results of a population-based survey from the sisters antiretroviral therapy programme for prevention of HIV, an integrated response (SAPPH-IRe) trial. J Acquir Immune Defic Syndr. 2017;74(4):375–82.

    Article  PubMed  Google Scholar 

  3. Hayes R, Floyd S, Schaap A, Shanaube K, Bock P, Sabapathy K, et al. A universal testing and treatment intervention to improve HIV control: one-year results from intervention communities in Zambia in the HPTN 071 (PopART) cluster-randomised trial. PLoS Med. 2017;14(5):e1002292.

    Article  PubMed  PubMed Central  Google Scholar 

  4. Sohler NL, Coleman SM, Cabral H, Naar-King S, Tobias C, Cunningham CO. Does self-report data on HIV primary care utilization agree with medical record data for socially marginalized populations in the United States? AIDS Patient Care STDS. 2009;23(10):837–43.

    Article  PubMed  PubMed Central  Google Scholar 

  5. Sewell J, Daskalopoulou M, Nakagawa F, Lampe F, Edwards S, Perry N, et al. Accuracy of self-report of HIV viral load among people with HIV on antiretroviral treatment. HIV medicine. 2017;18(7):463–73.

    Article  PubMed  CAS  Google Scholar 

  6. Voss JG, Cesan A, Jensen K, Yahiaoui A, Steiner C, Bajwa S, et al. Agreement between self-reported knowledge and medical record data. Clin Nurs Res. 2015;24(3):318–36.

    Article  PubMed  Google Scholar 

  7. Buisker TR, Dufour MK, Myers JJ. Recall of nadir CD4 cell count and most recent HIV viral load among HIV-infected, socially marginalized adults. AIDS Behav. 2015;19(11):2108–16.

    Article  PubMed  PubMed Central  Google Scholar 

  8. Lippman SA, Shade SB, El Ayadi AM, Gilvydis JM, Grignon JS, Liegler T, et al. Attrition and opportunities along the HIV care continuum: findings from a population-based sample, North West Province, South Africa. J Acquir Immune Defic Syndr. 2016;73(1):91–9.

    Article  PubMed  PubMed Central  Google Scholar 

  9. Wafula R, Masyuko S, Ng’ang’a L, Kim AA, Gichangi A, Mukui I, et al. Engagement in HIV care among Kenyan adults and adolescents: results from a national population-based survey. J Acquir Immune Defic Syndr. 2014;1(66 Suppl 1):S98–105.

    Article  Google Scholar 

  10. Orrell C, Cohen K, Leisegang R, Bangsberg DR, Wood R, Maartens G. Comparison of six methods to estimate adherence in an ART-naïve cohort in a resource-poor setting: which best predicts virological and resistance outcomes? AIDS Res Ther. 2017;14(1):20.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  11. Das M, Raymond HF, Chu P, Nieves-Rivera I, Pandori M, Louie B, et al. Measuring the unknown: calculating community viral load among HIV-infected MSM unaware of their HIV status in San Francisco from National HIV Behavioral Surveillance, 2004-2011. J Acquir Immune Defic Syndr. 2013;63(2):e84–6.

    Article  PubMed  PubMed Central  Google Scholar 

  12. Krumpal I. Determinants of social desirability bias in sensitive surveys: a literature review. Qual Quant. 2013;47(4):2025–47.

    Article  Google Scholar 

  13. Hewett PC, Mensch BS, Ribeiro MCSDA, Jones HE, Lippman SA, Montgomery MR, et al. Using sexually transmitted infection biomarkers to validate reporting of sexual behavior within a randomized, experimental evaluation of interviewing methods. Am J Epidemiol. 2008;168(2):202–11.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Mensch BS, Hewett PC, Abbott S, Rankin J, Littlefield S, Ahmed K, et al. Assessing the reporting of adherence and sexual activity in a simulated microbicide trial in South Africa: an interview mode experiment using a placebo gel. AIDS Behav. 2011;15(2):407–21.

    Article  PubMed  Google Scholar 

  15. Gnambs T, Kaspar K. Disclosure of sensitive behaviors across self-administered survey modes: a meta-analysis. Behav Res Methods. 2015;47(4):1237–59.

    Article  PubMed  Google Scholar 

  16. Latkin CA, Vlahov D. Socially desirable response tendency as a correlate of accuracy of self-reported HIV serostatus for HIV seropositive injection drug users. Addiction. 1998;93(8):1191–7.

    Article  PubMed  CAS  Google Scholar 

  17. Nieuwkerk PT, de Boer-van der Kolk IM, Prins JM, Locadia M, Sprangers MA. Self-reported adherence is more predictive of virological treatment response among patients with a lower tendency towards socially desirable responding. Antivir Ther. 2010;15(6):913–6.

    Article  PubMed  CAS  Google Scholar 

  18. Langhaug LF, Sherr L, Cowan FM. How to improve the validity of sexual behaviour reporting: systematic review of questionnaire delivery modes in developing countries. Trop Med Int Health. 2010;15(3):362–81.

    Article  PubMed  PubMed Central  Google Scholar 

  19. Phillips AE, Gomez GB, Boily M, Garnett GP. A systematic review and meta-analysis of quantitative interviewing tools to investigate self-reported HIV and STI associated behaviours in low-and middle-income countries. Int J Epidemiol. 2010;39(6):1541–55.

    Article  PubMed  Google Scholar 

  20. Bender BG, Bartlett SJ, Rand CS, Turner C, Wamboldt FS, Zhang L. Impact of interview mode on accuracy of child and parent report of adherence with asthma-controller medication. Pediatrics. 2007;120(3):e471–7.

    Article  PubMed  Google Scholar 

  21. Hewett PC, Haberland N, Apicella L, Mensch BS. The (mis) reporting of male circumcision status among men and women in Zambia and Swaziland: a randomized evaluation of interview methods. PLoS ONE. 2012;7(5):e36251.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  22. Wilson IB, Carter AE, Berg KM. Improving the self-report of HIV antiretroviral medication adherence: is the glass half full or half empty? Curr HIV/AIDS Rep. 2009;6(4):177–86.

    Article  PubMed  PubMed Central  Google Scholar 

  23. Law MG, Hurley SF, Carlin JB, Chondros P, Gardiner S, Kaldor JM. A comparison of patient interview data with pharmacy and medical records for patients with acquired immunodeficiency syndrome or human immunodeficiency virus infection. J Clin Epidemiol. 1996;49(9):997–1002.

    Article  PubMed  CAS  Google Scholar 

  24. Bhandari A, Wagner T. Self-reported utilization of health care services: improving measurement and accuracy. Med Care Res Rev. 2006;63(2):217–35.

    Article  PubMed  Google Scholar 

  25. Wilson IB, Fowler FJ, Cosenza CA, Michaud J, Bentkover J, Rana A, et al. Cognitive and field testing of a new set of medication adherence self-report items for HIV care. AIDS Behav. 2014;18(12):2349–58.

    Article  PubMed  Google Scholar 

  26. Corneli A, Perry B, McKenna K, Agot K, Ahmed K, Taylor J, et al. Participants’ explanations for nonadherence in the FEM-PrEP clinical trial. J Acquir Immune Defic Syndr. 2016;71(4):452–61.

    Article  PubMed  Google Scholar 

  27. Corneli AL, McKenna K, Perry B, Ahmed K, Agot K, Malamatsho F, et al. The science of being a study participant: FEM-PrEP participants’ explanations for overreporting adherence to the study pills and for the whereabouts of unused pills. J Acquir Immune Defic Syndr. 2015;68(5):578–84.

    Article  PubMed  Google Scholar 

  28. Musara P, Montgomery ET, Mgodi NM, Woeber K, Akello CA, Hartmann M, et al. How presentation of drug detection results changed reports of product adherence in South Africa, Uganda and Zimbabwe. AIDS Behav 2017:1–10.

  29. van der Straten A, Stadler J, Montgomery E, Hartmann M, Magazi B, Mathebula F, et al. Women’s experiences with oral and vaginal pre-exposure prophylaxis: the VOICE-C qualitative study in Johannesburg, South Africa. PLoS ONE. 2014;9(2):e89118.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  30. Boender TS, Sigaloff KC, McMahon JH, Kiertiburanakul S, Jordan MR, Barcarolo J, et al. Long-term virological outcomes of first-line antiretroviral therapy for HIV-1 in low-and middle-income countries: a systematic review and meta-analysis. Clin Infect Dis. 2015;61(9):1453–61.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Stirratt MJ, Dunbar-Jacob J, Crane HM, Simoni JM, Czajkowski S, Hilliard ME, et al. Self-report measures of medication adherence behavior: recommendations on optimal use. Transl Behav Med. 2015;5(4):470–82.

    Article  PubMed  PubMed Central  Google Scholar 

  32. Shisana O, Rehle T, Simbayi L, Zuma K, Jooste S, Zungu N, et al. South African national HIV prevalence, incidence and behaviour survey, 2012;2014.

  33. Prach LM, Puren A, Lippman SA, Carmona S, Stephenson S, Cutler E, et al. Design and implementation of an external quality assessment program for HIV viral load measurements using dried blood spots. J Clin Microbiol. 2015;53(3):964–6.

    Article  PubMed  PubMed Central  Google Scholar 

  34. National Department of Health. National consolidated guidelines for the prevention of mother-to-child transmission of HIV (PMTCT) and the management of HIV in children, adolescents and adults;2015.

  35. Charmaz K. Constructing grounded theory. Thousand Oaks: Sage; 2014.

    Google Scholar 

  36. SocioCultural Research Consultants. Dedoose, version 7.0. 23. Web application for managing, analyzing, and presenting qualitative and mixed method research data. Los Angeles, CA: SocioCultural Research Consultants, LLC;2016. www.dedoose.com.

  37. Rohr JK, Gómez-Olivé FX, Rosenberg M, Manne-Goehler J, Geldsetzer P, Wagner RG, et al. Performance of self-reported HIV status in determining true HIV status among older adults in rural South Africa: a validation study. J Int AIDS Soc;2017:20.

  38. Simoni JM, Kurth AE, Pearson CR, Pantalone DW, Merrill JO, Frick PA. Self-report measures of antiretroviral therapy adherence: a review with recommendations for HIV research and clinical management. AIDS Behav. 2006;10(3):227–45.

    Article  PubMed  PubMed Central  Google Scholar 

  39. Drapeau A, Boyer R, Diallo FB. Discrepancies between survey and administrative data on the use of mental health services in the general population: findings from a study conducted in Quebec. BMC Public Health. 2011;11(1):837.

    Article  PubMed  PubMed Central  Google Scholar 

  40. Beauclair R, Meng F, Deprez N, Temmerman M, Welte A, Hens N, et al. Evaluating audio computer assisted self-interviews in urban South African communities: evidence for good suitability and reduced social desirability bias of a cross-sectional survey on sexual behaviour. BMC Med Res Methodol. 2013;13(1):11.

    Article  PubMed  PubMed Central  Google Scholar 

  41. The South African National AIDS Council. Let our actions count. South Africa’s national strategic plan for HIV, TB and STIs 2017-2022;2017.

  42. Erb S, Letang E, Glass T, Natamatungiro A, Mnzava D, Mapesi H, et al. Health care provider communication training in rural Tanzania empowers HIV-infected patients on antiretroviral therapy to discuss adherence problems. HIV Med;2017.

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Acknowledgements

We thank the team at I-TECH South Africa, including all field workers, community health workers, and site supervisors who conducted the survey. We thank the North West Provincial Department of Health, Dr. Ruth Segomotsi Mompati District DoH, Lekwa Teemane and Greater Taung Sub-district DoH, and the Provincial Research Committee for their support. We thank the participants for their generosity and willingness to be part of this study.

Funding

This project was funded by the US Centers for Disease Control and Prevention Cooperative Agreement 5U2GGH000324-02. The contents of this manuscript are solely the responsibility of the authors and do not necessarily represent the views of CDC.

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Correspondence to Alyssa C. Mooney.

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The authors have no conflicts of interest to disclose.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the Committee for Human Research at the University of California, San Francisco; the Human Subjects Division at University of Washington; the Human Sciences Research Council Research Ethics Committee in South Africa; the Policy, Planning, Research, Monitoring and Evaluation Committee for the North West Provincial Department of Health; and the CDC’s Center for Global Health, Human Research Protection Office, and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Informed consent was obtained from all individual participants included in the study.

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Mooney, A.C., Campbell, C.K., Ratlhagana, MJ. et al. Beyond Social Desirability Bias: Investigating Inconsistencies in Self-Reported HIV Testing and Treatment Behaviors Among HIV-Positive Adults in North West Province, South Africa. AIDS Behav 22, 2368–2379 (2018). https://doi.org/10.1007/s10461-018-2155-9

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