Patterns of patient and healthcare provider viewpoints regarding participation in HIV cure-related clinical trials. Findings from a multicentre French survey using Q methodology (ANRS-APSEC)
Christel Protière
(1, 2)
,
Bruno Spire
(1, 2)
,
Marion Mora
(1, 2)
,
Isabelle Poizot-Martin
(1, 3)
,
Marie Preau
(4, 1)
,
Marjolaine Doumergue
(4)
,
Philippe Morlat
(5)
,
David Zucman
(6)
,
Cecile Goujard
(7, 8)
,
François Raffi
(9)
,
Olivier Lambotte
(8, 10)
,
Marie Suzan-Monti
(1, 2)
1
SESSTIM - U912 INSERM - Aix Marseille Univ - IRD -
Sciences Economiques et Sociales de la Santé & Traitement de l'Information Médicale
2 ORS PACA - Observatoire régional de la santé Provence-Alpes-Côte d'Azur [Marseille]
3 CISIH - Centre d'information et de soins de l'immuno-déficience humaine
4 GRePS - Groupe de Recherche en Psychologie Sociale
5 Service de médecine interne et maladies infectieuses [Bordeaux]
6 Service de Médecine Interne [Suresnes]
7 CESP - Centre de recherche en épidémiologie et santé des populations
8 Service de Médecine Interne et Immunologie clinique [AP-HP Hôpital Bicêtre]
9 Département des Maladies Infectieuses [CHU Nantes]
10 IMVA - U1184 - Immunologie des Maladies Virales et Autoimmunes
2 ORS PACA - Observatoire régional de la santé Provence-Alpes-Côte d'Azur [Marseille]
3 CISIH - Centre d'information et de soins de l'immuno-déficience humaine
4 GRePS - Groupe de Recherche en Psychologie Sociale
5 Service de médecine interne et maladies infectieuses [Bordeaux]
6 Service de Médecine Interne [Suresnes]
7 CESP - Centre de recherche en épidémiologie et santé des populations
8 Service de Médecine Interne et Immunologie clinique [AP-HP Hôpital Bicêtre]
9 Département des Maladies Infectieuses [CHU Nantes]
10 IMVA - U1184 - Immunologie des Maladies Virales et Autoimmunes
Christel Protière
- Fonction : Auteur
- PersonId : 21097
- IdHAL : christel-protiere
- ORCID : 0000-0002-5602-9617
- IdRef : 077935489
Bruno Spire
- Fonction : Auteur
- PersonId : 21429
- IdHAL : cheick-haiballa-kounta
- ORCID : 0000-0001-6800-0742
Marion Mora
- Fonction : Auteur
- PersonId : 763200
- ORCID : 0000-0001-7543-6982
Isabelle Poizot-Martin
- Fonction : Auteur
- PersonId : 21118
- IdHAL : isabelle-poizot-martin
- ORCID : 0000-0002-5676-5411
- IdRef : 059519045
Marie Preau
- Fonction : Auteur
- PersonId : 171105
- IdHAL : preau-marie
- ORCID : 0000-0002-6239-1671
- IdRef : 084340525
Marjolaine Doumergue
- Fonction : Auteur
- PersonId : 172698
- IdHAL : marjolaine-doumergue
- ORCID : 0000-0003-3060-4529
- IdRef : 197233546
Marie Suzan-Monti
Connectez-vous pour contacter l'auteur
- Fonction : Auteur correspondant
- PersonId : 21154
- IdHAL : marie-suzan-monti
- ORCID : 0000-0003-2507-2863
- IdRef : 253119545
Connectez-vous pour contacter l'auteur
Résumé
Context
Despite huge advances in the fight against HIV concerning diagnosis, clinical efficacy of antiretroviral treatments (ART), patient survival and quality of life, there is still no cure. Recent developments in HIV cure research have opened the way for clinical trials which could lead to a temporary or definitive end to ART. However, ethical questions exist about related trial-participation risks. The main goal of the ANRS-APSEC survey was, using Q-methodology, to investigate the viewpoints of people living with HIV (PLWH) and HIV healthcare providers (HHP) regarding motivations for and barriers to participation in HIV Cure-related clinical trials (HCRCT).
Materials and methods
Thirty-three statements were defined encompassing seven dimensions: treatment and follow-up; risks; benefits; patient-physician relationship; beliefs and attitudes; information; target population. Forty-one PLWH and 41 HHP from five French HIV services were asked to rank-order the statements.
Results
Five main viewpoints were elicited from “the most motivated” to “the most reluctant” vis-à-vis HCRCT participation. All placed importance on the wish to participate in HIV research. This result is in line with the HIV-specific culture of joint mobilization. For some viewpoints, the motivation to participate in/propose HCRCT was primarily conditioned by side-effects and/or by constraints, which overall were more accepted by PLWH than HHP. Some viewpoints placed particular importance on HCRCT recruitment strategies. Finally, some expressed a high acceptance of risks and constraints but emphasized the need for information.
Conclusion
HIV cure research clinical trials (HCRCT) constitute a risky yet unavoidable step towards the goal of finding a cure. To improve future HCRCT and informed consent designs, based on PLWH and HHP preferences and expectations, we need greater knowledge about how these populations perceive the risks and the benefits of HCRCT. Our results confirmed the importance of careful, studied HCRCT design, management and communication, to ensure PLWH and HHP acceptability and convergence of their expectations.
Domaines
PsychologieFormat du dépôt | Fichier |
---|---|
Type de dépôt | Article dans une revue |
Titre |
en
Patterns of patient and healthcare provider viewpoints regarding participation in HIV cure-related clinical trials. Findings from a multicentre French survey using Q methodology (ANRS-APSEC)
|
Résumé |
en
Context
Despite huge advances in the fight against HIV concerning diagnosis, clinical efficacy of antiretroviral treatments (ART), patient survival and quality of life, there is still no cure. Recent developments in HIV cure research have opened the way for clinical trials which could lead to a temporary or definitive end to ART. However, ethical questions exist about related trial-participation risks. The main goal of the ANRS-APSEC survey was, using Q-methodology, to investigate the viewpoints of people living with HIV (PLWH) and HIV healthcare providers (HHP) regarding motivations for and barriers to participation in HIV Cure-related clinical trials (HCRCT).
Materials and methods
Thirty-three statements were defined encompassing seven dimensions: treatment and follow-up; risks; benefits; patient-physician relationship; beliefs and attitudes; information; target population. Forty-one PLWH and 41 HHP from five French HIV services were asked to rank-order the statements.
Results
Five main viewpoints were elicited from “the most motivated” to “the most reluctant” vis-à-vis HCRCT participation. All placed importance on the wish to participate in HIV research. This result is in line with the HIV-specific culture of joint mobilization. For some viewpoints, the motivation to participate in/propose HCRCT was primarily conditioned by side-effects and/or by constraints, which overall were more accepted by PLWH than HHP. Some viewpoints placed particular importance on HCRCT recruitment strategies. Finally, some expressed a high acceptance of risks and constraints but emphasized the need for information.
Conclusion
HIV cure research clinical trials (HCRCT) constitute a risky yet unavoidable step towards the goal of finding a cure. To improve future HCRCT and informed consent designs, based on PLWH and HHP preferences and expectations, we need greater knowledge about how these populations perceive the risks and the benefits of HCRCT. Our results confirmed the importance of careful, studied HCRCT design, management and communication, to ensure PLWH and HHP acceptability and convergence of their expectations.
|
Auteur(s) |
Christel Protière
1, 2
, Bruno Spire
1, 2
, Marion Mora
1, 2
, Isabelle Poizot-Martin
1, 3
, Marie Preau
4, 1
, Marjolaine Doumergue
4
, Philippe Morlat
5
, David Zucman
6
, Cecile Goujard
7, 8
, François Raffi
9
, Olivier Lambotte
8, 10
, Marie Suzan-Monti
1, 2
1
SESSTIM - U912 INSERM - Aix Marseille Univ - IRD -
Sciences Economiques et Sociales de la Santé & Traitement de l'Information Médicale
( 540465 )
- Faculté de Médecine - Site Timone - 27 Bd Jean Moulin 13385 – Marseille Cedex 05
- France
2
ORS PACA -
Observatoire régional de la santé Provence-Alpes-Côte d'Azur [Marseille]
( 521833 )
- France
3
CISIH -
Centre d'information et de soins de l'immuno-déficience humaine
( 544468 )
- Hôpital Sainte-Marguerite, Service d'Immuno-Hématologie Clinique - C.I.S.I.H.
Pôle Oncologie-Spécialités médicales et chirurgicales
Assistance Publique - Hôpitaux de Marseille
13009 MARSEILLE
- France
4
GRePS -
Groupe de Recherche en Psychologie Sociale
( 49955 )
- Université Lyon 2 - Institut de Psychologie 5 avenue Pierre Mendès-France - 69676 BRON cedex
- France
5
Service de médecine interne et maladies infectieuses [Bordeaux]
( 14703 )
- 1, rue Jean burguet 33000 Bordeaux
- France
6
Service de Médecine Interne [Suresnes]
( 544466 )
- Suresnes
- France
7
CESP -
Centre de recherche en épidémiologie et santé des populations
( 106188 )
- 16 avenue Paul Vaillant Couturier 94807 Villejuif Cedex, France
- France
8
Service de Médecine Interne et Immunologie clinique [AP-HP Hôpital Bicêtre]
( 487755 )
- 78 Rue du Général Leclerc, 94270 Le Kremlin-Bicêtre.
- France
9
Département des Maladies Infectieuses [CHU Nantes]
( 544469 )
- France
10
IMVA - U1184 -
Immunologie des Maladies Virales et Autoimmunes
( 421311 )
- Site de l'Hôpital de Bicêtre - Faculté de Médecine Paris Sud - 63 rue Gabriel Péri 94276 Le Kremlin-Bicêtre Cedex.
Site du CEA de Fontenay-aux-Roses - 10, route du Panorama - BP 6 - 92265 Fontenay-aux-Roses.
- France
|
Financement |
|
Licence |
Paternité
|
Langue du document |
Anglais
|
Nom de la revue |
|
Vulgarisation |
Non
|
Comité de lecture |
Oui
|
Audience |
Internationale
|
Date de publication |
2017-11-02
|
Volume |
12
|
Numéro |
11
|
Domaine(s) |
|
Mots-clés |
en
HIV, Physicians, Adverse events, Clinical trials, Antiretroviral therapy, HIV diagnosis and management, Health care providers, Quality of life
|
DOI | 10.1371/journal.pone.0187489 |
Origine :
Publication financée par une institution
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