The perceived impact of an HIV cure by people living with HIV and key populations vulnerable to HIV in the Netherlands: A qualitative study

Kim A.G.J. Romijnders; Laura de Groot; Sigrid C.J.M. Vervoort; Maartje G.J. Basten; Berend J. van Welzen; Mirjam E. Kretzschmar; Peter Reiss; Udi Davidovich; Ganna Rozhnova

doi:10.1016/j.jve.2022.100066

The perceived impact of an HIV cure by people living with HIV and key populations vulnerable to HIV in the Netherlands: A qualitative study

Kim A.G.J. Romijnders^*, Laura de Groot, Sigrid C.J.M. Vervoort, Maartje G.J. Basten, Berend J. van Welzen, Mirjam E. Kretzschmar, Peter Reiss, Udi Davidovich, Ganna Rozhnova

^*Corresponding author for this work

Athena Institute

Research output: Contribution to Journal › Article › Academic › peer-review

Abstract

Introduction: When an HIV cure becomes available, it will have consequences for people living with HIV (PLHIV) and key populations who are vulnerable to HIV. This qualitative study aimed to explore the perceived impact of two HIV cure scenarios (post-treatment control when HIV is suppressed without the need for ongoing antiretroviral treatment (ART) and complete HIV elimination) on the quality of life of PLHIV and key populations living without HIV in the Netherlands. Methods: Participants were purposefully sampled from the Amsterdam Cohort Studies, the AGEhIV Cohort Study, the outpatient clinic of the University Medical Centre Utrecht and the Dutch HIV Association to increase variability. Semi-structured in-depth interviews were conducted between October 2020 and March 2021 and thematically analysed. Results: Of the 42 interviewed participants, 29 were PLHIV and 13 represented key populations (i.e., men who have sex with men and people injecting drugs). Both PLHIV and participants from vulnerable key populations hoped that a cure would result in normalization of their lives by removing the need to disclose HIV, reducing stigma and guilt, increasing independence of ART, and liberating sexual behaviour. Both groups believed only HIV elimination could accomplish this desired impact. Conclusions: While the post-treatment control scenario seems a more plausible outcome of current HIV cure research, our findings highlight that participants may not perceive it as a true cure. Involvement of PLHIV and vulnerable key populations in devising acceptable and feasible experimental approaches to HIV cure is essential to ensure their future successful implementation.

Original language	English
Article number	100066
Pages (from-to)	1-7
Number of pages	7
Journal	Journal of Virus Eradication
Volume	8
Issue number	1
Early online date	25 Feb 2022
DOIs	https://doi.org/10.1016/j.jve.2022.100066
Publication status	Published - 8 Mar 2022

Bibliographical note

Funding Information:
We gratefully acknowledge the participants who were willing to share their experiences with us. In addition, we are thankful to all staff of the Amsterdam Cohort Studies, the AGEhIV Cohort Study, the infectious diseases outpatient clinic of the University Medical Centre Utrecht, and Chair Bertus Tempert and Medical Officer and Heath Advocate Renee Finkelfl?gel from the Dutch HIV Association for their valuable contribution to our recruitment. We gratefully acknowledge Maartje Dijkstra, Gail Henderson, Holly Peay, Stuart Rennie, and Fred Verdult for their involvement during the initial stages of this study. We thank students M. Diallo and D. Overduin for their contribution during the data collection. Finally, we thank our collaborators on the Aidsfonds project P-52901 (Daniela Bezemer, Maarten Schim van der Loef, Pythia Nieuwkerk, Godelieve de Bree, Janneke Heijne, Myrthe Verburgh, Sebastiaan Verboeket, Franco Romero, and Ard van Sighem) for the helpful discussions.

Funding Information:
The authors gratefully acknowledge funding by the Aidsfonds Netherlands, grant number P-52901.

Publisher Copyright:
© 2022 The Authors

Funding

We gratefully acknowledge the participants who were willing to share their experiences with us. In addition, we are thankful to all staff of the Amsterdam Cohort Studies, the AGEhIV Cohort Study, the infectious diseases outpatient clinic of the University Medical Centre Utrecht, and Chair Bertus Tempert and Medical Officer and Heath Advocate Renee Finkelfl?gel from the Dutch HIV Association for their valuable contribution to our recruitment. We gratefully acknowledge Maartje Dijkstra, Gail Henderson, Holly Peay, Stuart Rennie, and Fred Verdult for their involvement during the initial stages of this study. We thank students M. Diallo and D. Overduin for their contribution during the data collection. Finally, we thank our collaborators on the Aidsfonds project P-52901 (Daniela Bezemer, Maarten Schim van der Loef, Pythia Nieuwkerk, Godelieve de Bree, Janneke Heijne, Myrthe Verburgh, Sebastiaan Verboeket, Franco Romero, and Ard van Sighem) for the helpful discussions. The authors gratefully acknowledge funding by the Aidsfonds Netherlands, grant number P-52901.

Keywords

HIV cure
HIV elimination
HIV post-treatment control
Qualitative research
Quality of life
Sexual and gender minorities
Sexual behaviour

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1016/j.jve.2022.100066

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Cite this

Romijnders, K. A. G. J., de Groot, L., Vervoort, S. C. J. M., Basten, M. G. J., van Welzen, B. J., Kretzschmar, M. E., Reiss, P., Davidovich, U., & Rozhnova, G. (2022). The perceived impact of an HIV cure by people living with HIV and key populations vulnerable to HIV in the Netherlands: A qualitative study. Journal of Virus Eradication, 8(1), 1-7. Article 100066. https://doi.org/10.1016/j.jve.2022.100066

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abstract = "Introduction: When an HIV cure becomes available, it will have consequences for people living with HIV (PLHIV) and key populations who are vulnerable to HIV. This qualitative study aimed to explore the perceived impact of two HIV cure scenarios (post-treatment control when HIV is suppressed without the need for ongoing antiretroviral treatment (ART) and complete HIV elimination) on the quality of life of PLHIV and key populations living without HIV in the Netherlands. Methods: Participants were purposefully sampled from the Amsterdam Cohort Studies, the AGEhIV Cohort Study, the outpatient clinic of the University Medical Centre Utrecht and the Dutch HIV Association to increase variability. Semi-structured in-depth interviews were conducted between October 2020 and March 2021 and thematically analysed. Results: Of the 42 interviewed participants, 29 were PLHIV and 13 represented key populations (i.e., men who have sex with men and people injecting drugs). Both PLHIV and participants from vulnerable key populations hoped that a cure would result in normalization of their lives by removing the need to disclose HIV, reducing stigma and guilt, increasing independence of ART, and liberating sexual behaviour. Both groups believed only HIV elimination could accomplish this desired impact. Conclusions: While the post-treatment control scenario seems a more plausible outcome of current HIV cure research, our findings highlight that participants may not perceive it as a true cure. Involvement of PLHIV and vulnerable key populations in devising acceptable and feasible experimental approaches to HIV cure is essential to ensure their future successful implementation.",

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note = "Funding Information: We gratefully acknowledge the participants who were willing to share their experiences with us. In addition, we are thankful to all staff of the Amsterdam Cohort Studies, the AGEhIV Cohort Study, the infectious diseases outpatient clinic of the University Medical Centre Utrecht, and Chair Bertus Tempert and Medical Officer and Heath Advocate Renee Finkelfl?gel from the Dutch HIV Association for their valuable contribution to our recruitment. We gratefully acknowledge Maartje Dijkstra, Gail Henderson, Holly Peay, Stuart Rennie, and Fred Verdult for their involvement during the initial stages of this study. We thank students M. Diallo and D. Overduin for their contribution during the data collection. Finally, we thank our collaborators on the Aidsfonds project P-52901 (Daniela Bezemer, Maarten Schim van der Loef, Pythia Nieuwkerk, Godelieve de Bree, Janneke Heijne, Myrthe Verburgh, Sebastiaan Verboeket, Franco Romero, and Ard van Sighem) for the helpful discussions. Funding Information: The authors gratefully acknowledge funding by the Aidsfonds Netherlands, grant number P-52901. Publisher Copyright: {\textcopyright} 2022 The Authors",

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doi = "10.1016/j.jve.2022.100066",

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Romijnders, KAGJ, de Groot, L, Vervoort, SCJM, Basten, MGJ, van Welzen, BJ, Kretzschmar, ME, Reiss, P, Davidovich, U & Rozhnova, G 2022, 'The perceived impact of an HIV cure by people living with HIV and key populations vulnerable to HIV in the Netherlands: A qualitative study', Journal of Virus Eradication, vol. 8, no. 1, 100066, pp. 1-7. https://doi.org/10.1016/j.jve.2022.100066

The perceived impact of an HIV cure by people living with HIV and key populations vulnerable to HIV in the Netherlands: A qualitative study. / Romijnders, Kim A.G.J.; de Groot, Laura; Vervoort, Sigrid C.J.M. et al.
In: Journal of Virus Eradication, Vol. 8, No. 1, 100066, 08.03.2022, p. 1-7.

Research output: Contribution to Journal › Article › Academic › peer-review

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T1 - The perceived impact of an HIV cure by people living with HIV and key populations vulnerable to HIV in the Netherlands: A qualitative study

AU - Romijnders, Kim A.G.J.

AU - de Groot, Laura

AU - Vervoort, Sigrid C.J.M.

AU - Basten, Maartje G.J.

AU - van Welzen, Berend J.

AU - Kretzschmar, Mirjam E.

AU - Reiss, Peter

AU - Davidovich, Udi

AU - Rozhnova, Ganna

N1 - Funding Information: We gratefully acknowledge the participants who were willing to share their experiences with us. In addition, we are thankful to all staff of the Amsterdam Cohort Studies, the AGEhIV Cohort Study, the infectious diseases outpatient clinic of the University Medical Centre Utrecht, and Chair Bertus Tempert and Medical Officer and Heath Advocate Renee Finkelfl?gel from the Dutch HIV Association for their valuable contribution to our recruitment. We gratefully acknowledge Maartje Dijkstra, Gail Henderson, Holly Peay, Stuart Rennie, and Fred Verdult for their involvement during the initial stages of this study. We thank students M. Diallo and D. Overduin for their contribution during the data collection. Finally, we thank our collaborators on the Aidsfonds project P-52901 (Daniela Bezemer, Maarten Schim van der Loef, Pythia Nieuwkerk, Godelieve de Bree, Janneke Heijne, Myrthe Verburgh, Sebastiaan Verboeket, Franco Romero, and Ard van Sighem) for the helpful discussions. Funding Information: The authors gratefully acknowledge funding by the Aidsfonds Netherlands, grant number P-52901. Publisher Copyright: © 2022 The Authors

PY - 2022/3/8

Y1 - 2022/3/8

N2 - Introduction: When an HIV cure becomes available, it will have consequences for people living with HIV (PLHIV) and key populations who are vulnerable to HIV. This qualitative study aimed to explore the perceived impact of two HIV cure scenarios (post-treatment control when HIV is suppressed without the need for ongoing antiretroviral treatment (ART) and complete HIV elimination) on the quality of life of PLHIV and key populations living without HIV in the Netherlands. Methods: Participants were purposefully sampled from the Amsterdam Cohort Studies, the AGEhIV Cohort Study, the outpatient clinic of the University Medical Centre Utrecht and the Dutch HIV Association to increase variability. Semi-structured in-depth interviews were conducted between October 2020 and March 2021 and thematically analysed. Results: Of the 42 interviewed participants, 29 were PLHIV and 13 represented key populations (i.e., men who have sex with men and people injecting drugs). Both PLHIV and participants from vulnerable key populations hoped that a cure would result in normalization of their lives by removing the need to disclose HIV, reducing stigma and guilt, increasing independence of ART, and liberating sexual behaviour. Both groups believed only HIV elimination could accomplish this desired impact. Conclusions: While the post-treatment control scenario seems a more plausible outcome of current HIV cure research, our findings highlight that participants may not perceive it as a true cure. Involvement of PLHIV and vulnerable key populations in devising acceptable and feasible experimental approaches to HIV cure is essential to ensure their future successful implementation.

AB - Introduction: When an HIV cure becomes available, it will have consequences for people living with HIV (PLHIV) and key populations who are vulnerable to HIV. This qualitative study aimed to explore the perceived impact of two HIV cure scenarios (post-treatment control when HIV is suppressed without the need for ongoing antiretroviral treatment (ART) and complete HIV elimination) on the quality of life of PLHIV and key populations living without HIV in the Netherlands. Methods: Participants were purposefully sampled from the Amsterdam Cohort Studies, the AGEhIV Cohort Study, the outpatient clinic of the University Medical Centre Utrecht and the Dutch HIV Association to increase variability. Semi-structured in-depth interviews were conducted between October 2020 and March 2021 and thematically analysed. Results: Of the 42 interviewed participants, 29 were PLHIV and 13 represented key populations (i.e., men who have sex with men and people injecting drugs). Both PLHIV and participants from vulnerable key populations hoped that a cure would result in normalization of their lives by removing the need to disclose HIV, reducing stigma and guilt, increasing independence of ART, and liberating sexual behaviour. Both groups believed only HIV elimination could accomplish this desired impact. Conclusions: While the post-treatment control scenario seems a more plausible outcome of current HIV cure research, our findings highlight that participants may not perceive it as a true cure. Involvement of PLHIV and vulnerable key populations in devising acceptable and feasible experimental approaches to HIV cure is essential to ensure their future successful implementation.

KW - HIV cure

KW - HIV elimination

KW - HIV post-treatment control

KW - Qualitative research

KW - Quality of life

KW - Sexual and gender minorities

KW - Sexual behaviour

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The perceived impact of an HIV cure by people living with HIV and key populations vulnerable to HIV in the Netherlands: A qualitative study

Abstract

Bibliographical note

Funding

Keywords

UN SDGs

Access to Document

Persistent URL (handle)

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Cite this