Measuring reconceptualization and reprioritization during France's first COVID-19-related lockdown in women with and without a history of cancer: an adaptation of the SeiQol-DW and PGI.

PURPOSE: This study aimed to provide a better understanding of the patient-perceived effects of France's first COVID-19-related lockdown on the quality of life (QoL) of women affected by cancer, and to test an ad hoc measurement scale for evaluating quasi-individualized QoL. QoL was measured for both during (i.e., current) and before (i.e., retrospectively) the lockdown. Respondents were women registered on the research platform Seintinelles. METHODS: A tool for measuring quasi-individualized QoL was adapted from the SeiQol-DW and PGI. It was distributed as part of a larger online self-questionnaire to a sample of 1303 women with a history of cancer (i.e., former or current) and with no such history. RESULTS: Current and retrospective QoL scores were not significantly different between the two respondent groups. An analysis of reconceptualization and reprioritization revealed a cancer-specific effect: women with a history of cancer reconceptualized more, while women with no such history reprioritized more. CONCLUSION: Our novel ad hoc quasi-qualitative tool made it possible to assess the QoL of women with a history of cancer, a particularly vulnerable population in the context of the COVID-19 pandemic. Furthermore, it highlighted a difference in reconceptualization and reprioritization between this population and women with no such history.

Can we talk about price with patients when choosing antiretroviral therapy? A survey with people living with HIV and prescribers in France.

OBJECTIVE: The aim of this study was to evaluate people living with HIV (PLWH) and HIV specialist prescribers' perception of discussing antiretroviral therapy (ART) price in PLWH's care and the acceptability of choosing or switching to various types of less expensive ARTs. DESIGN: Cross-sectional surveys (one in a convenience sample of PLWH and one in a voluntary response sample of HIV specialist prescribers). SETTING AND PARTICIPANTS: The surveys were conducted among PLHW attending an HIV clinic in the North of Paris (cohort of 4922 PLWH in 2016), and HIV specialists working in French HIV clinics (210 across 12 districts/28), between January and June 2016. METHOD: Self-administered questionnaires were constructed using data collected during focus groups with PLWH and prescribers. Pretests were carried out to select the questions and items. Descriptive analyses of the 129 complete questionnaires of PLWH and 79 of prescribers are presented. RESULTS: Among PLWH, 128/129 were on ART and 54% (69/128) gave a fair estimation of the price of their current regimen. Among prescribers, 24% (19/79) thought that their patients knew this price. Taking into account the price of ART was not perceived as a negative step in the history of French response to HIV epidemic for 53% (68/129) of PLWH and 82% (65/79) of prescribers. Seventy-seven PLWH (60%) would agree to switch to less expensive antiretroviral regimens (as effective and with similar adverse events) if pills were bigger; 42 (33%) if there were more daily doses, and 37 (29%) if there were more pills per dose; prescribers were more circumspect. CONCLUSION: A high proportion of PLWH gave a fair estimate of their ART price and this seemed unexpected by HIV specialists. Consideration of drug prices when choosing ART was perceived as conceivable by PLWH and prescribers if effectiveness and tolerance were also considered.

Acceptability of HIV cure-related trials: the challenges for physicians and people living with HIV (ANRS-APSEC).

Essential HIV cure-related clinical trials (HCRCT) have a potentially high-risk profile in terms of participants' health, which could hinder enrollment by people living with HIV (PLWH) and healthcare professionals (HP). The ANRS-APSEC survey is part of the IAS "Towards an HIV cure" initiative, which promotes multidisciplinary research for a safe, affordable and scalable cure. The study objectives were to understand the psychosocial mechanisms underlying PLWH and HP viewpoints about future HCRCT. Six focus group discussions (three with PLWH (n = 21) and three with HP (n = 30)) were held in three French infectious disease units. From these, three perspectives on HCRCT were identified. The first involved beliefs and knowledge associating HCRCT with poorer health and quality of life for PLWH. The second concerned perceptions of HCRCT as a biological and epidemiological flashback to a situation when HIV infection was left uncontrolled. The third was characterized by aspects of historical HIV culture that embrace innovation.

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).

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.

Giving or giving back: new psychosocial insights from sperm donors in France.

Despite the growing importance of the international scientific literature concerning donor insemination, studies of French samples are rare. We recently had the opportunity to conduct a nationwide study on psychosocial issues related to semen donation in France. In this article, we present the main results of an analysis of the narratives of 33 sperm donors. We examine the meaning they attribute to this experience, their motivations, the social ramifications of their action, and their perspective on the principles of sperm donation in France. We highlight our results by comparing them to those derived from other recent international studies in different legislative contexts. Finally, we suggest a hypothesis regarding donor motivations based on recent literature in social sciences regarding the fundamental role of gift and reciprocity. These issues, particularly the anonymity of gamete donation, are currently at the heart of a national debate related to the expected revision of the French bioethics law.