Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 108
Filtrar
1.
Explor Res Clin Soc Pharm ; 13: 100412, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38322505

RESUMO

This manuscript offers a glimpse into the Canadian healthcare system, emphasizing the prevalence and management of minor ailments through self-care practices. The first section outlines the strengths and challenges of the healthcare system, including access issues and escalating costs. The second section explores self-care in Canada, outlines the Self-Care Readiness Index, and Canadians' proactive management of common conditions through self-care activities, including the use of over-the-counter (OTC) medicines. Consumer behaviors, preferences, and the thriving OTC market are discussed. It also discusses existing programs and initiatives encouraging self-care. While lacking a coordinated national strategy, various organizations, including Health Canada, have taken steps to regulate and promote self-care products. The role of pharmacies, industry groups, and public health campaigns in fostering self-care is explored, along with public access to OTC medicines, Rx-to-OTC switching, and consumer expectations related to such medicines. Factors influencing self-care and self-medication are explored, focusing on access to medical care, public perceptions of OTC medicines, and the public's ability to engage in appropriate actions. The crucial role of pharmacists in minor ailment care is examined. Insights are provided into Canada's healthcare landscape, emphasizing the significance of self-care in managing minor ailments. The public has access to many resources on how to engage in self-care and deal with minor ailments, but a formal system to promote them is lacking. The findings prompt considerations for future healthcare policies and public health campaigns, highlighting the evolving nature of healthcare practices in the nation.

3.
AIDS Res Hum Retroviruses ; 40(1): 22-27, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37227023

RESUMO

The concept of vulnerability in bioethics was first referenced in 1979, when the Belmont Report highlighted the need for special consideration of certain populations in the application of its general principles of respect for persons, beneficence, and justice in research with human participants. Since then, a body of literature has emerged regarding the content, status, and scope, as well as ethical and practical implications of vulnerability in biomedical research. The social history of HIV treatment development has at various points reflected and actively influenced bioethics' debate on vulnerability. In the late 1980s and early 1990s, people with AIDS activist groups drafted landmark patient empowerment manifestos like The Denver Principles, fighting to have greater involvement in the design and oversight of clinical trials related to HIV treatment, and in doing so, pushed against research ethics protocols created with the intention of protecting vulnerable populations. The determination of appropriate benefit/risk profiles in clinical trials was no longer limited to the purview of clinicians and scientists, but began to include the perspectives of people with HIV (PWH) and affected communities. In contemporary HIV cure-related research, where participants often risk health for no personal clinical benefit, the community's voiced motivations and objectives for participation continue to challenge population-based accounts of vulnerability. While the development of a framework for discussion and the establishment of clear regulatory requirements are necessary to support the practical and ethical conduct of research, they risk distraction from the fundamental value of voluntary participation and potentially overlook the unique history and perspectives of PWH in their participation in the quest toward an HIV cure.


Assuntos
Pesquisa Biomédica , Infecções por HIV , Humanos , Infecções por HIV/tratamento farmacológico , Ética em Pesquisa , Populações Vulneráveis , Medição de Risco
4.
AIDS ; 38(2): 235-243, 2024 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-37861674

RESUMO

INTRODUCTION: The Last Gift study at the University of California San Diego (UCSD), United States enrolls terminally ill people with HIV (PWH) in HIV cure research. METHODS: From 2017 to 2022, we conducted surveys with Last Gift participants and their next-of-kin/loved ones to evaluate willingness to participate in different types of HIV cure research at the end of life (EOL). We analyzed willingness data descriptively. RESULTS: We surveyed 17 Last Gift participants and 17 next-of-kin/loved ones. More than half of Last Gift participants ( n  = 10; 58.8%) expressed willingness to participate in studies involving totally new treatments or approaches ('first-in-human' studies), a combination of different approaches, the use of unique antibodies, proteins or molecules, or therapeutic vaccines. Under one-quarter of Last Gift participants ( n  = 4; 23.5%) expressed willingness to participate in research involving interventions that may shorten their life expectancy to benefit medical research. Most Last Gift participants and their next-of-kin/loved ones also expressed high acceptance for various types of donations and biopsies at the EOL (e.g. hair donations and skin, lymph node or gut biopsies). DISCUSSION: Knowing whether people would be willing to participate in different types of EOL HIV cure research can help inform the design of future innovative studies. As a research community, we have a duty to design studies with adequate safeguards to preserve the public trust in research and honor PWH's important gift to humanity.


Assuntos
Infecções por HIV , Humanos , Estados Unidos , Infecções por HIV/prevenção & controle , Inquéritos e Questionários , Cognição , Morte
5.
PLoS One ; 18(9): e0291113, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37656712

RESUMO

BACKGROUND: Misconceptions about the health risks of cannabis remain prevalent, indicating the need to improve public health messaging and determine the effectiveness of educational programming. Our objective was to develop a standardized questionnaire to measure knowledge about cannabis in the context of cannabis legalization. METHODS: A Cannabis Knowledge Assessment Tool (CKAT) was created using the Delphi method. A purposive sample of healthcare professionals, policymakers, academics, patients, and students served as the content and development experts. Principal component analysis from the codes identified from open-ended feedback guided the item development. Upon completion, the CKAT was administered as a pre- and post-test in four schools (7th and 9th Grade) in Canada. The data were analysed to determine whether knowledge scores changed after participating in a cannabis education program. RESULTS: Twenty-four experts initially participated in the Delphi process and 18 (75% retention) continued throughout. Principal component analysis identified 3 domains: 1) effects of cannabis on the individual, 2) general information about cannabis, and 3) cannabis harm reduction. The final questionnaire consisted of 16 multiple-true-false questions (64 items) and received a Flesch-Kincaid Grade Level of 6.3, and a SMOG index score of 7.6. The CKAT was completed by 132 students; seventy-three 7th grade and fifty-nine 9th grade students. The baseline mean CKAT score was 46.2 (SD:5.5), which increased to 50.7 (SD:4.6) after the cannabis educational program (p<0.05). CONCLUSIONS: A novel tool to measure knowledge of cannabis was developed and piloted in 7th grade and 9th grade students. Future studies are required to test usability and validity of the CKAT in other contexts.


Assuntos
Cannabis , Alucinógenos , Humanos , Escolaridade , Estudantes , Canadá , Agonistas de Receptores de Canabinoides
6.
J Virus Erad ; 9(2): 100328, 2023 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-37440872

RESUMO

Introduction: Although current antiretroviral therapy allows most people with HIV (PWH) to experience normal longevity with a good quality of life, an HIV cure remains elusive due to HIV reservoir formation within deep tissues. An HIV cure remains highly desirable to the community of PWH. This study reports on the perceived risks and benefits of participation in the Last Gift study, a study aimed at characterizing HIV reservoirs via post-mortem autopsy, among PWH at the end of life (EOL) and their next-of-kin (NOK)/loved ones. Methods: Last Gift participants (PWH with a terminal illness and/or near the end of life) and their NOK/loved ones were surveyed for perceptions of risks, benefits, and meaning for participation in the Last Gift study. Results: The average age of the 17 Last Gift participants was 66.6 years, 3 were females, 1 person identified as Hispanic, and 15 as Caucasian. The average age of the 17 NOK/loved ones was 56.7 years, and relationships to Last Gift participants included partner/spouse, sibling, friend, child, parent, grandparent, and nephew. The only perceived personal risk of the Last Gift among participants was the blood draws (3/17). NOK/loved ones perceived the following risks: blood draws (2/17), physical pain (3/17), worry that something bad will happen (2/17), and unpleasant side effects (1/17). Participants in Last Gift and NOK/loved ones indicated the study had various positive social effects. For both participants and NOK/loved ones, the most frequent perceived personal benefit of the Last Gift was the satisfaction of supporting HIV cure research. Discussion: Participants perceived minimal personal and societal risks and valued the altruistic benefits of participating in the Last Gift study. Last Gift participants and NOK/loved ones were cautious about possible personal risks of EOL HIV cure research but still viewed that the emotional, psychological and societal benefits of participation outweighed potential risks.

7.
Lancet Infect Dis ; 23(10): e418-e430, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37295453

RESUMO

Analytical treatment interruptions (ATIs) have become a key methodological approach to evaluate the effects of experimental HIV cure-related research interventions. During ATIs, sex partners of trial participants might be at risk of acquiring HIV. This risk raises both ethical and feasibility concerns about ATI trials. We propose a partner protection package (P3) approach to address these concerns. A P3 approach would provide guidance to investigators, sponsors, and those who are designing and implementing context-specific partner protections in HIV cure-related trials involving ATIs. The approach would also help assure institutional review boards, trial participants, and communities that ATI trials with a P3 would provide appropriate partner protections. We offer a prototype P3 framework that delineates three basic considerations for protecting participants' sex partners during ATI trials: (1) ensuring the scientific and social value of the ATI and the trial, (2) reducing the likelihood of unintended HIV transmission, and (3) ensuring prompt management of any acquired HIV infection. We outline possible ways of implementing these basic considerations.


Assuntos
Infecções por HIV , Humanos , Infecções por HIV/tratamento farmacológico , Infecções por HIV/prevenção & controle , Ensaios Clínicos como Assunto
8.
Pathog Immun ; 8(1): 1-16, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37252012

RESUMO

Initiated in 2017 after extensive community engagement, the Last Gift program enrolls altruistic volunteers willing to donate their cells and tissues at the end of life to allow studies on HIV reservoir dynamics across anatomical sites. As the Last Gift team received tissue requests outside the scope of HIV cure research, we noticed the absence of guiding frameworks to help prioritize the use of altruistically donated human biological materials. In this commentary, we present a proposed framework for prioritizing the use of donated human biological materials within and outside the end-of-life (EOL) HIV cure research context, using the Last Gift study as an example. First, we discuss regulatory and policy considerations, and highlight key ethical values to guide prioritization decisions. Second, we present our prioritization framework and share some of our experiences prioritizing requests for donated human biological materials within and outside EOL HIV cure research.

11.
AIDS Care ; 35(10): 1587-1589, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-36226381

RESUMO

We compared completion of advance directives (AD), designation of a healthcare proxy, and stage in the advance care planning process (pre-contemplation/contemplation, preparation/action) between older adults with (N = 110) and without (N = 50) HIV. Participants' mean age was 61.3, most identified as male (82%) and sexual minorities (74%), were racially/ethnically diverse (44% white, 28% Latinx, 16% Black); 37% had an AD and 44% had a healthcare proxy. In adjusted logistic regressions, HIV- individuals had higher odds of being in preparation/action for having an AD (aOR: 2.6) and healthcare proxy (aOR: 3.6) compared to people living with HIV. Older age (aOR: 1.1) and having a sense of greater purpose in life (aOR: 2.1) were also positively associated with being in the preparation/action stage for having a healthcare proxy.


Assuntos
Planejamento Antecipado de Cuidados , Infecções por HIV , Humanos , Masculino , Idoso , Pessoa de Meia-Idade , Diretivas Antecipadas , Coleta de Dados
12.
J Med Ethics ; 49(5): 305-310, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-35732421

RESUMO

The Last Gift is an observational HIV cure-related research study conducted with people with HIV at the end of life (EOL) at the University of California San Diego. Participants agree to voluntarily donate blood and other biospecimens while living and their bodies for a rapid research autopsy postmortem to better understand HIV reservoir dynamics throughout the entire body. The Last Gift study was initiated in 2017. Since then, 30 volunteers were enrolled who are either (1) terminally ill with a concomitant condition and have a prognosis of 6 months or less or (2) chronically ill with multiple comorbidities and nearing the EOL.Multiple ethical and logistical challenges have been revealed during this time; here, we share our lessons learnt and ethical analysis. Issues relevant to healthcare research include surrogate informed consent, personal and professional boundaries, challenges posed conducting research in a pandemic, and clinician burnout and emotional support. Issues more specific to EOL and postmortem research include dual roles of clinical care and research teams, communication between research personnel and clinical teams, legally required versus rapid research autopsy, identification of next of kin/loved ones and issues of inclusion. Issues specific to the Last Gift include logistics of body donation and rapid research autopsy, and disposition of the body as a study benefit.We recommend EOL research teams to have clear provisions around surrogate informed consent, rotate personnel to maintain boundaries, limit direct contact with staff associated with clinical care and have a clear plan for legally required versus research autopsies, among other recommendations.


Assuntos
Morte , Infecções por HIV , Humanos , Consentimento Livre e Esclarecido , Doente Terminal , Comunicação
13.
J Card Surg ; 37(12): 4536-4542, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36316816

RESUMO

BACKGROUND: Coronavirus disease 2019 (COVID-19) pneumonia can be associated with refractory respiratory failure requiring extracorporeal membrane oxygenation(ECMO). Although ECMO has helped many COVID patients, optimal management strategies for these patients remain unknown. METHODS: We conducted a retrospective review of all COVID patients requiring ECMO at our hospital. Six months into the pandemic, we changed our management strategy to focus on early mobilization. The early mobilization effort included tracheostomy within 48 h of cannulation, decreasing sedation, and an aggressive physical and occupational therapy program progressing toward early ambulation while on ECMO. The primary outcome measured was survival to discharge. The primary stratification was based on the mobilization strategy. RESULTS: From 2020 to 2021, 47 COVID patients have been supported with ECMO at our institution. Five are still in the hospital on ECMO. 39 (83%) were supported with venovenous ECMO while 8 (17%) were supported with venoarterial or a right ventricular assist device type configuration. All 47 (100%) were cannulated at bedside with transesophageal echocardiographic guidance. The average age was 47 ± 9 years; 36(77%) were male; and 20 (43%) were Hispanic. The median duration of support was 22 (11-44) days. Excluding those who remain in the hospital and on support, overall survival to discharge was 24/42 (57%). When stratified by mobilization strategy, early tracheostomy and mobilization were associated with significantly improved survival (74% [17/23] vs. 37% [7/19], p = .02). There were no changes in patient acuity or duration of support throughout the study period. CONCLUSION: In conclusion, early tracheostomy, decreased sedation, and aggressive mobilization of COVID-19 ECMO patients is associated with improved survival.


Assuntos
COVID-19 , Oxigenação por Membrana Extracorpórea , Insuficiência Respiratória , Humanos , Masculino , Adulto , Pessoa de Meia-Idade , Feminino , Oxigenação por Membrana Extracorpórea/efeitos adversos , Deambulação Precoce , COVID-19/terapia , Estudos Retrospectivos , Insuficiência Respiratória/terapia
14.
Curr HIV/AIDS Rep ; 19(6): 566-579, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36260191

RESUMO

PURPOSE OF REVIEW: Deep tissue HIV reservoirs, especially within the central nervous system (CNS), are understudied due to the challenges of sampling brain, spinal cord, and other tissues. Understanding the cellular characteristics and viral dynamics in CNS reservoirs is critical so that HIV cure trials can address them and monitor the direct and indirect effects of interventions. The Last Gift program was developed to address these needs by enrolling altruistic people with HIV (PWH) at the end of life who agree to rapid research autopsy. RECENT FINDINGS: Recent findings from the Last Gift emphasize significant heterogeneity across CNS reservoirs, CNS compartmentalization including differential sensitivity to broadly neutralizing antibodies, and bidirectional migration of HIV across the blood-brain barrier. Our findings add support for the potential of CNS reservoirs to be a source of rebounding viruses and reseeding of systemic sites if they are not targeted by cure strategies. This review highlights important scientific, practical, and ethical lessons learned from the Last Gift program in the context of recent advances in understanding the CNS reservoirs and key knowledge gaps in current research.


Assuntos
Infecções por HIV , HIV-1 , Humanos , HIV-1/fisiologia , Sistema Nervoso Central , Encéfalo , Barreira Hematoencefálica
15.
HIV Res Clin Pract ; 23(1): 76-90, 2022 08 02.
Artigo em Inglês | MEDLINE | ID: mdl-35968737

RESUMO

Background: HIV cure-directed clinical trials using analytical treatment interruptions (ATIs) require participants to adhere to frequent monitoring visits for viral load tests. Novel viral load monitoring strategies are needed to decrease participant burden during ATIs.Objective: To examine acceptability of a novel home-based blood collection device for viral load testing in the context of two ongoing ATI trials in Philadelphia, PA, United States.Methods: From January 2021 to February 2022, participants completed three in-depth interviews via teleconference during their participation in an ATI: (1) within two weeks of enrollment in the device study, (2) approximately four weeks after beginning to use the device, and (3) within two weeks of the end of the ATI when ART was re-initiated. We used conventional content analysis to analyze the data.Results: We recruited 17 participants: 15 were cisgender males, 1 cisgender female, and 1 transgender woman. We observed an overall 87% success rate in drawing blood with the device from home collection and found overall high acceptance of the device. A mean of 91.5 devices per participant were used for home-based blood collection. Most PWH viewed the device as relatively convenient, painless, easy to use, and a simple solution to frequent blood draws. The main challenge encountered was the inability to completely fill up devices with blood in some cases. Most participants reported positive experiences with mailing blood samples and could see themselves using the device on a regular basis outside of ATIs.Conclusions: Our study showed participant valued the novel home-based peripheral blood collection for viral load testing in the context of ATI trials. More research will be necessary to optimize implementation of the device and to assess whether blood collected can reliably measure viral loads in the context of ATI trials.


Assuntos
Infecções por HIV , Feminino , Infecções por HIV/tratamento farmacológico , Humanos , Estudos Longitudinais , Masculino , Testes Sorológicos , Estados Unidos , Carga Viral , Suspensão de Tratamento
16.
Medicine (Baltimore) ; 101(31): e29907, 2022 Aug 05.
Artigo em Inglês | MEDLINE | ID: mdl-35945741

RESUMO

Since the emergency approval of several therapeutic coronavirus disease 2019 (COVID-19) vaccines in the United States, >500 million doses have been administered. However, there have been disparities in vaccine acceptability and uptake. We examined demographic, human immunodeficiency virus (HIV) disease, and psychosocial factors associated with COVID-19 vaccine acceptability in older adults (≥50 years) living with HIV in the Coachella Valley, California. Participants completed a 1-time anonymous online questionnaire assessing their demographic (i.e., age, race, education, etc), HIV disease (i.e., viral suppression, years living with HIV, acquired immunodeficiency syndrome diagnosis), psychosocial (i.e., HIV-related stigma, personal mastery, depression, etc) characteristics, and COVID-19 vaccine acceptability. Respondents were offered an electronic $20 United States dollar (USD) gift card for survey completion. Descriptive, univariable, and multivariable tests were conducted to analyze the data. Between September 2020 and February 2021, 114 surveys were completed. Eighty-six (75%) agreed/strongly agreed with the COVID-19 vaccine acceptability statement that they saw no problem with receiving a COVID-19 vaccine if one became available. Among those who agreed/strongly agreed, the mean age was 62.2 years (standard deviation = 7.20); 86% self-identified as White; 95% male; 91% with more than high school education; and 31% with annual income <$20,000 USD. Among respondents who disagreed/strongly disagreed, the mean age was 59.9 years (standard deviation = 4.85); 50% self-identified as White; 50% male; 64% with more than high school education; and 4% with annual income <$20,000 USD. In the univariable analyses, those who disagreed/strongly disagreed with the COVID-19 vaccine acceptability statement were significantly more likely to be living with HIV for fewer years, experiencing higher levels of HIV-related stigma and depression, and with lower levels of personal mastery. In the multivariable logistic regression model, self-identification as female vs male and unemployed vs employed was significantly associated with decreased COVID-19 vaccine acceptability (odds ratio = 0.09, 95% confidence interval: 0.01-0.71 and odds ratio = 0.08, 95% confidence interval: 0.01-0.70 respectively), adjusting for ethnicity, marital status, education, disability, years living with HIV, HIV-related stigma, and depression. Additional studies are needed to understand vaccine-related decision-making among older adults living with HIV. Programmatic efforts may also be necessary to disseminate accurate information/resources about COVID-19 vaccines to those with more recent HIV diagnoses, experiencing HIV-related stigma and depression, with lower levels of personal mastery, and facing socioeconomic disparities.


Assuntos
COVID-19 , Infecções por HIV , Idoso , COVID-19/epidemiologia , COVID-19/prevenção & controle , Vacinas contra COVID-19 , Estudos Transversais , Feminino , Infecções por HIV/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Estigma Social , Estados Unidos/epidemiologia
17.
AIDS Res Hum Retroviruses ; 38(8): 670-682, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35778845

RESUMO

HIV cure research requires interrogating latent HIV reservoirs in deep tissues, which necessitates autopsies to avoid risks to participants. An HIV autopsy biobank would facilitate this research, but such research raises ethical issues and requires participant engagement. This study explores the willingness to participate in HIV cure research at the end of life. Participants include Canadians with HIV [people with HIV (PWHIV)] aged 55 years or older. Following a mixed-method study design, all participants completed a phone or online survey, and a subset of participants participated in in-depth phone or videoconference interviews. We produced descriptive statistics of quantitative data and a thematic analysis of qualitative data. Barriers and facilitators were categorized under domains of the Theoretical Domains Framework. From April 2020 to August 2021, 37 participants completed the survey (mean age = 69.9 years old; mean duration of HIV infection = 28.5 years), including 15 interviewed participants. About three quarters of participants indicated being willing to participate in hypothetical medical studies toward the end of life (n = 30; 81.1%), in HIV biobanking (n = 30; 81.1%), and in a research autopsy (n = 28; 75.7%) to advance HIV cure research, mainly for altruistic benefits. The main perceived risks had to do with physical pain and confidentiality. Barriers and facilitators were distributed across five domains: social/professional role and identity, environmental context and resources, social influences, beliefs about consequences, and capabilities. Participants wanted more information about study objectives and procedures, possible accommodations with their last will, and rationale for studies or financial interests funding studies. Our results indicate that older PWHIV would be willing to participate in HIV cure research toward the end of life, HIV biobanking, and research autopsy. However, a dialogue should be initiated to inform participants thoroughly about HIV cure studies, address concerns, and accommodate their needs and preferences. Additional work is required, likely through increased community engagement, to address educational needs.


Assuntos
Infecções por HIV , HIV-1 , Idoso , Bancos de Espécimes Biológicos , Canadá , Morte , Infecções por HIV/tratamento farmacológico , Humanos , Pesquisa Qualitativa , Latência Viral
18.
BMC Med Ethics ; 23(1): 39, 2022 04 09.
Artigo em Inglês | MEDLINE | ID: mdl-35397551

RESUMO

BACKGROUND: HIV cure research involving cell and gene therapy has intensified in recent years. There is a growing need to identify ethical standards and safeguards to ensure cell and gene therapy (CGT) HIV cure research remains valued and acceptable to as many stakeholders as possible as it advances on a global scale. METHODS: To elicit preliminary ethical and practical considerations to guide CGT HIV cure research, we implemented a qualitative, in-depth interview study with three key stakeholder groups in the United States: (1) biomedical HIV cure researchers, (2) bioethicists, and (3) community stakeholders. Interviews permitted evaluation of informants' perspectives on how CGT HIV cure research should ethically occur, and were transcribed verbatim. We applied conventional content analysis focused on inductive reasoning to analyze the rich qualitative data and derive key ethical and practical considerations related to CGT towards an HIV cure. RESULTS: We interviewed 13 biomedical researchers, 5 community members, and 1 bioethicist. Informants generated considerations related to: perceived benefits of CGT towards an HIV cure, perceived risks, considerations necessary to ensure an acceptable benefit/risk balance, CGT strategies considered unacceptable, additional ethical considerations, and considerations for first-in-human CGT HIV cure trials. Informants also proposed important safeguards to developing CGT approaches towards an HIV cure, such as the importance of mitigating off-target effects, mitigating risks associated with long-term duration of CGT interventions, and mitigating risks of immune overreactions. CONCLUSION: Our study identified preliminary considerations for CGT-based HIV cure across three key stakeholder groups. Respondents identified an ideal cure strategy as one which would durably control HIV infection, protect the individual from re-acquisition, and eliminate transmission to others. Known and unknown risks should be anticipated and perceived as learning opportunities to preserve and honor the altruism of participants. Preclinical studies should support these considerations and be transparently reviewed by regulatory experts and peers prior to first-in-human studies. To protect the public trust in CGT HIV cure research, ethical and practical considerations should be periodically revisited and updated as the science continues to evolve. Additional ethics studies are required to expand stakeholder participation to include traditionally marginalized groups and clinical care providers.


Assuntos
Infecções por HIV , Eticistas , Terapia Genética , Infecções por HIV/prevenção & controle , Humanos , Pesquisa Qualitativa , Pesquisadores , Estados Unidos
19.
AIDS Behav ; 26(10): 3267-3278, 2022 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-35386050

RESUMO

Little is known about how payment affects individuals' decisions to participate in HIV research. Using data from a U.S. survey of people living with HIV (N = 292), we examined potential research participants' attitudes toward payment, perceived study risk based on payment amount, and preferred payment forms, and how these factors vary by sociodemographic characteristics. Most respondents agreed people should be paid for HIV research participation (96%) and said payment would shape their research participation decisions (80%). Men, less formally educated individuals, and members of some minoritized racial-ethnic groups were less likely to be willing to participate in research without payment. Higher payment was associated with higher perceived study risks, while preferences for form of payment varied by age, gender, education, race-ethnicity, and census region of residence. Findings suggest payment may influence prospective research participants' risk-benefit calculus and participation, and that a one-size-fits-all approach to payment could differentially influence participation among distinct sociodemographic groups.


RESUMEN: Se sabe poco acerca de cómo el pago afecta a la decisión de participar en investigaciones sobre VIH. Utilizando data de una encuesta de Estados Unidos sobre personas viviendo con VIH (N = 292), se examinó la actitud de potenciales participantes de investigación acerca del pago, el riesgo de estudio percibido basado en la cantidad del pago, las formas de pago preferidas y cómo estos factores varían según las características sociodemográficas. La mayoría de los que respondieron la encuesta estuvieron de acuerdo en que las personas debían recibir un pago por participar en una investigación sobre VIH (96%) y dijeron que el pago podría moldear su decisión de participar en la investigación (80%). Los hombres, individuos con menor educación formal y los miembros de algún grupo racial-étnico minoritario se mostraron menos propensos a participar en una investigación sin recibir pago. Se asoció un pago más alto con una mayor percepción de riesgos en el estudio, mientras que las preferencias por las formas de pago variaron según la edad, el género, la educación, la raza-etnicidad y la región. Los resultados sugirieron que el pago podría influir en el cálculo del riesgo-beneficio y en la participación de los potenciales participantes en una investigación prospectiva, y que un enfoque único para el pago podría influir de manera diferencial entre los distintos grupos sociodemográficos en lo que respecta a su participación.


Assuntos
Infecções por HIV , Etnicidade , Humanos , Masculino , Participação do Paciente , Estudos Prospectivos , Inquéritos e Questionários
20.
J Surg Res ; 276: 24-30, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35334380

RESUMO

INTRODUCTION: Although extracorporeal membrane oxygenation (ECMO) has been associated with improved outcomes in COVID patients with respiratory failure, data regarding the need for blood product utilization in this population is inadequate. METHODS: We conducted a retrospective review of all COVID patients requiring ECMO support at our facility. Patient demographics, co-morbidities, measures of acuity, and blood product utilization were identified. Patients were stratified by the presence of a major bleed and the need for dialysis. The primary outcome was blood product utilization. Linear regression models were used to assess predictors of the need for blood products. RESULTS: From 2020 to 2021, 41 patients with COVID-19 were included in our study. Overall 1601 d of support, COVID ECMO patients received 755 units of packed red blood cells (PRBC), 51 units of fresh frozen plasma (FFP), 326 platelets, and 1702 cryoprecipitate, amounting to 18.4 units PRBC per patient or 3.30 units per week of ECMO support. Both major bleeding and the need for dialysis were associated with higher rates of transfusion of PRBC, FFP, and platelets. The average non-bleeding COVID ECMO patient who did not need dialysis required 2.17 units of PRBC, 0.12 units of FFP, 0.76 platelets, and 8.36 of cryoprecipitate per week of ECMO support. On multivariable linear regression analysis, each day on ECMO was associated with 0.30 [0.19-0.42, P < 0.01] units of PRBC. CONCLUSIONS: In conclusion, COVID ECMO is associated with a significant need for blood and blood products. Major bleeding and dialysis are important drivers of blood product requirements.


Assuntos
COVID-19 , Oxigenação por Membrana Extracorpórea , Insuficiência Respiratória , Transfusão de Sangue , COVID-19/terapia , Oxigenação por Membrana Extracorpórea/efeitos adversos , Hemorragia/etiologia , Hemorragia/terapia , Humanos , Insuficiência Respiratória/etiologia , Estudos Retrospectivos
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA