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“Cure” Versus “Clinical Remission”: The Impact of a Medication Description on the Willingness of People Living with HIV to Take a Medication

Abstract

Many people living with HIV (PLWHIV) state that they would be willing to take significant risks to be “cured” of the virus. However, how they interpret the word “cure” in this context is not clear. We used a randomized survey to examine whether PLWHIV had a different willingness to take a hypothetical HIV medication if it causes flu-like symptoms, but provides: (a) cure, (b) remission that was labeled “cure”, or (c) remission. PLWHIV (n = 454) were more willing to take a medication that provided a “cure” versus a “remission” if the side effects lasted less than 1 year. PLWHIV were more willing to take a medication that provided a remission that was labeled “cure” versus a “remission” (p = 0.01) if the side effects lasted 2 weeks. Clinicians and researchers should be aware of the impact of the word “cure” and ensure that PLWHIV fully understand the possible outcomes of their treatment options.

Abstracta

Mucha gente que vive con el VIH dice que estaría dispuesta a tomar riesgos significativos para ser “curado(a)s” del virus. Sin embargo, no es claro cómo se interpreta la palabra “cura” en este contexto. Nosotros usamos una encuesta aleatoria para examinar que tanto la gente que vive con el VIH está dispuesta a tomar un medicamento hipotético para el VIH si causa síntomas como de la gripe, pero provee: a) cura, b) remisión que es etiquetada como “cura”, o c) remisión. Las personas que vive con el VIH (n = 454) estaban más dispuestas a tomar un medicamento que provee una “cura” en vez de una “remisión” si los efectos secundarios duraban menos que un año. Las personas que viven con el VIH estaban más dispuestas a tomar un medicamento que proveía una remisión que estaba etiquetada como “cura” envés de “remisión” (p = 0.01) si los efectos secundarios duraban dos semanas. Los clínicos(a)s e investigadores deben tener en cuenta el impacto de la palabra “cura” y asegurarse que la gente que vive con el VIH entienda completamente los posibles resultados de sus opciones para tratamiento.

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References

  1. 1.

    Rodger AJ, Lodwick R, Schechter M, Deeks S, Amin J, Gilson R, Paredes R, Bakowska E, Engsig FN, Phillips A. Mortality in well controlled HIV in the continuous antiretroviral therapy arms of the SMART and ESPRIT trials compared with the general population. Aids. 2013;27(6):973–9.

    CAS  PubMed  Article  Google Scholar 

  2. 2.

    van Sighem A, Gras L, Reiss P, Brinkman K, de Wolf F. Life expectancy of recently diagnosed asymptomatic HIV-infected patients approaches that of uninfected individuals. AIDS. 2010;24(10):1527–35.

    PubMed  Article  Google Scholar 

  3. 3.

    Wandeler G, Johnson LF, Egger M. Trends in life expectancy of HIV-positive adults on ART across the globe: comparisons with general population. Curr. Opinion HIVAIDS. 2016;11(5):492–500.

    CAS  Article  Google Scholar 

  4. 4.

    Gagnon M. “There is a chain of connections”: using syndemics theory to understand HIV treatment side effects. AIDS Care. 2018;30(7):910–3.

    PubMed  Article  Google Scholar 

  5. 5.

    Miners A, Phillips A, Kreif N, Rodger A, Speakman A, Fisher M, et al. Health-related quality-of-life of people with HIV in the era of combination antiretroviral treatment: a cross-sectional comparison with the general population. Lancet HIV. 2014;1(1):32–40.

    Article  Google Scholar 

  6. 6.

    Wohl DA, Kuwahara RK, Javadi K, Kirby C, Rosen DL, Napravnik S, et al. Financial barriers and lapses in treatment and care of HIV-infected adults in a southern state in the United States. AIDS patient care and STDs. 2017;31(11):463–9.

    PubMed  PubMed Central  Article  Google Scholar 

  7. 7.

    Bogart LM, Cowgill BO, Kennedy D, Ryan G, Murphy DA, Elijah J, et al. HIV-related stigma among people with HIV and their families: a qualitative analysis. AIDS Behav. 2008;12(2):244–54.

    PubMed  Article  Google Scholar 

  8. 8.

    Murray BR, Kratka A, Scherr KA, Eyal N, Blumenthal-Barby J, Freedberg KA, et al. What risk of death would people take to be cured of HIV and why? A survey of people living with HIV. J. Virus Eradic. 2019;5(2):109–15.

    Google Scholar 

  9. 9.

    Deeks SG, Lewin SR, Ross AL, Ananworanich J, Benkirane M, Cannon P, et al. International AIDS Society global scientific strategy: towards an HIV cure 2016. Nature Med. 2016;22(8):839–50.

    CAS  PubMed  Article  Google Scholar 

  10. 10.

    Spivak AM, Planelles V. HIV-1 eradication: early trials (and tribulations). Trend. Mol. Med. 2016;22(1):10–27.

    Article  Google Scholar 

  11. 11.

    FDA. HIV patient-focused drug development backgrounder document. Maryland: FDA; 2013.

    Google Scholar 

  12. 12.

    International AIDS Society Scientific Working Group on HIV Cure, Deeks SG, Autran B, et al. Towards an HIV cure: a global scientific strategy. Nat. Rev. Immunol. 2012;12(8):607–14.

    Article  Google Scholar 

  13. 13.

    Gupta RK, Abdul-Jawad S, McCoy LE, Mok HP, Peppa D, Salgado M, et al. Grant P. HIV-1 remission following CCR5Δ32/Δ32 haematopoietic stem-cell transplantation. Nature. 2019;568(7751):244–8.

    CAS  PubMed  PubMed Central  Article  Google Scholar 

  14. 14.

    Yukl SA, et al. Challenges in detecting HIV persistence during potentially curative interventions: a study of the Berlin patient. PLoS Pathog. 2013;9:e1003347.

    CAS  PubMed  PubMed Central  Article  Google Scholar 

  15. 15.

    TAG. Research Toward a Cure Trials [Internet]. 2019. http://www.treatmentactiongroup.org/cure/trials. Accessed 30 Aug, 2019.

  16. 16.

    Dubé K, Luter S, Lesnar B, Newton L, Galea J, Brown B, et al. Use of ‘eradication’ in HIV cure-related research: a public health debate. BMC Pub. Health. 2018;18(1):245–51.

    Article  Google Scholar 

  17. 17.

    Henderson GE. The ethics of HIV “cure” research: what can we learn from consent forms? AIDS Res. Hum. Retrovir. 2015;31(1):56–63.

    PubMed  Article  Google Scholar 

  18. 18.

    Peay HL, Henderson GE. What motivates participation in HIV cure trials? A call for real-time assessment to improve informed consent. J. Virus Erad. 2015;1(1):51–3.

    PubMed  PubMed Central  Google Scholar 

  19. 19.

    Julg B, Dee L, Ananworanich J, Barouch DH, Bar K, Caskey M, et al. Recommendations for analytical antiretroviral treatment interruptions in HIV research trials—report of a consensus meeting. Lancet HIV. 2019;6:259–68.

    Article  Google Scholar 

  20. 20.

    Garner SA, Rennie S, Ananworanich J, Dube K, Margolis DM, Sugarman J, et al. Interrupting antiretroviral treatment in HIV cure research: scientific and ethical considerations. J. Virus Erad. 2017;3(2):82–4.

    PubMed  PubMed Central  Google Scholar 

  21. 21.

    McMahon JH, Elliott JH, Roney J, Hagenauer M, Lewin SR. Experiences and expectations of participants completing an HIV cure focused clinical trial. AIDS. 2015;29(2):248–50.

    PubMed  PubMed Central  Article  Google Scholar 

  22. 22.

    Sylla L, Evans D, Taylor J, Gilbertson A, Palm D, Auerbach JD, et al. If we build it, will they come? Perceptions of HIV cure-related research by people living with HIV in four US cities: a qualitative focus group study. AIDS Res. Hum. Retrovir. 2018;34(1):56–66.

    PubMed  Article  Google Scholar 

  23. 23.

    Krishnamurti T, Woloshin S, Schwartz LM, Fischhoff B. A randomized trial testing US Food and Drug Administration “breakthrough” language. JAMA Int. Med. 2015;175(11):1856–8.

    Article  Google Scholar 

  24. 24.

    Mena-Martin FJ, Martin-Escudero JC, Simal-Blanco F, Carretero-Ares JL, Arzua-Mouronte D, Herreros-Fernandez V. Health-related quality of life of subjects with known and unknown hypertension: results from the population-based Hortega study. J. Hypertens. 2003;21(7):1283–9.

    CAS  PubMed  Article  Google Scholar 

  25. 25.

    Scherer LD, Finan C, Simancek D, Finkelstein JI, Tarini BA. Effect of “pink eye” label on parents’ intent to use antibiotics and perceived contagiousness. Clin. Pediatr. 2016;55(6):543–8.

    Article  Google Scholar 

  26. 26.

    Scherer LD, Zikmund-Fisher BJ, Fagerlin A, Tarini BA. Influence of “GERD” label on parents’ decision to medicate infants. Pediatrics. 2013;131(5):839–45.

    PubMed  PubMed Central  Article  Google Scholar 

  27. 27.

    Rennie S, Siedner M, Tucker JD, Moodley K. The ethics of talking about ‘HIV cure’. BMC Med. Ethics. 2015;16(1):18–26.

    PubMed  PubMed Central  Article  Google Scholar 

  28. 28.

    Eyal N, Kuritzkes DR. Challenges in clinical trial design for HIV-1 cure research. Lancet. 2013;382(9903):1464–5.

    PubMed  Article  Google Scholar 

  29. 29.

    Pankrac J, Klein K, Mann JF. Eradication of HIV-1 latent reservoirs through therapeutic vaccination. AIDS Res. Therapy. 2017;14(1):45–9.

    Article  Google Scholar 

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Acknowledgments

This research is supported by NIH Grant R56AI114617, Principal Investigator: Nir Eyal. 08/01/2014- 07/31/2019. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The funding source had NO involvement in: study design, the data collection, analysis, and interpretation of data, the writing of the report or the decision to submit the paper for publication. We are grateful to the Emory Center for AIDS Research and UCLA Medical Center for the assistance in conducting the experiment.

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Correspondence to Ilona Fridman.

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Appendix

Appendix

Intention to Take Medication

Due to skewness in the data, we also ran a non-parametric test, which indicated similar results (Kruskal–Wallis Test, χ2 = 13.60, p = 0.001); Cure group vs. Remission group (Mann–Whitney U = 9,182.00, p < .001); Cure group vs Remission labeled “Cure” group (Mann–Whitney U = 10,169.00, p = 0.10); Remission labeled “Cure” group vs. Remission group (Mann–Whitney U = 9535.50, p = 0.04).

Attitude Toward Medication

We ran a non-parametric test, that indicated similar results: Cure group provided the highest rating, Remission group provided the lowest rating, and Remission labeled “Cure” group was in between of them (Kruskal–Wallis Test, χ2 = 16.99, p = 0.00). Cure group vs. Remission group (Mann–Whitney U = 8785.50, p = 0.00). Cure group vs Remission labeled “Cure” group (Mann–Whitney U = 9579.50, p = 0.02); Remission labeled “Cure” group vs. Remission group (Mann–Whitney U = 9730.50, p = 0.08).

Intention to Take Medication by the Duration of Side Effects

In this part, we repeated analysis for the intention to take the medication with the full sample (n = 454). We evaluated the participants’ willingness to tolerate side effects for each item using a MANOVA procedure with Bonferroni adjustment to account for multiple comparisons. The MANOVA test indicated a significant difference overall, MANOVA results, F(449, 3) = 4.23, p = .00, η2 = .03. Mean differences and statistics for each item is reported in Table 4. The columns illustrate the mean difference in participants’ willingness to take the medication between each pair of groups. In all cases, the mean of the second group listed was subtracted from the mean of the first group listed. Higher numbers indicated a stronger intend to take the medication.

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Fridman, I., Ubel, P.A., Blumenthal-Barby, J. et al. “Cure” Versus “Clinical Remission”: The Impact of a Medication Description on the Willingness of People Living with HIV to Take a Medication. AIDS Behav 24, 2054–2061 (2020). https://doi.org/10.1007/s10461-019-02769-1

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Keywords

  • Cure
  • Decision-making
  • Behavior
  • Remission
  • HIV
  • PLWHIV