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1.
Mol Cell ; 72(2): 207-210, 2018 10 18.
Artículo en Inglés | MEDLINE | ID: mdl-30340021

RESUMEN

According to "Research Exemplars," research requires attending to matters of heart as much as mind. The human dimension in research-relationships, passion, resilience, and leadership-was the common thread in their advice for a successful career. We discuss strategies to cultivate intra- and inter-personal skills fostering these aspects of research.


Asunto(s)
Investigación , Humanos , Liderazgo , Investigadores
2.
Proc Natl Acad Sci U S A ; 120(43): e2206981120, 2023 Oct 24.
Artículo en Inglés | MEDLINE | ID: mdl-37831745

RESUMEN

In January 2023, a new NIH policy on data sharing went into effect. The policy applies to both quantitative and qualitative research (QR) data such as data from interviews or focus groups. QR data are often sensitive and difficult to deidentify, and thus have rarely been shared in the United States. Over the past 5 y, our research team has engaged stakeholders on QR data sharing, developed software to support data deidentification, produced guidance, and collaborated with the ICPSR data repository to pilot the deposit of 30 QR datasets. In this perspective article, we share important lessons learned by addressing eight clusters of questions on issues such as where, when, and what to share; how to deidentify data and support high-quality secondary use; budgeting for data sharing; and the permissions needed to share data. We also offer a brief assessment of the state of preparedness of data repositories, QR journals, and QR textbooks to support data sharing. While QR data sharing could yield important benefits to the research community, we quickly need to develop enforceable standards, expertise, and resources to support responsible QR data sharing. Absent these resources, we risk violating participant confidentiality and wasting a significant amount of time and funding on data that are not useful for either secondary use or data transparency and verification.

3.
J Pediatr ; 270: 114015, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38492914

RESUMEN

OBJECTIVE: To identify perceived benefits, problems, facilitators, and barriers to adolescent online patient portal use. STUDY DESIGN: Qualitative, semi-structured interviews with dyads of parents and adolescents with or without chronic illness. The study team purposively sampled for racial and ethnic minorities and fathers. Three team members then performed thematic analysis of the transcripts, with subsequent dyadic analysis of themes represented by related parents and adolescents. RESULTS: We performed 102 interviews with 51 dyads of parents and adolescents (26 with chronic illness, 25 without chronic illness). Nearly all participants believed that adolescents should be permitted portal access. We identified 4 themes related to portal benefits: improves adolescent's knowledge of health; supports medical self-management and autonomy; strengthens communication and relationships; and supports parental influence. We identified 4 themes related to portal problems: misunderstanding or confusion; emotional distress; strain on relationships; and irresponsible use of portal. Facilitators of portal use included severity of illness, adolescent's curiosity, and ease of technology use. Barriers included lack of awareness or interest, complexity of information, and access difficulties. Twenty adolescents (39%) did not know they could access the portal, and 23 (45%) lacked interest in portals. Parents and adolescents seldom used the portal as a collaborative tool, and instead were engaging with the portal independently. CONCLUSION: Parents and adolescents perceive several benefits and problems with portal use, but many adolescents lack interest in using portals. Adolescent portals represent an underutilized resource to engage adolescents in their care.


Asunto(s)
Padres , Portales del Paciente , Investigación Cualitativa , Humanos , Adolescente , Masculino , Femenino , Padres/psicología , Adulto , Entrevistas como Asunto , Enfermedad Crónica/psicología , Relaciones Padres-Hijo
4.
Clin Transplant ; 37(5): e14948, 2023 05.
Artículo en Inglés | MEDLINE | ID: mdl-36822220

RESUMEN

INTRODUCTION: Many women who are solid organ transplant (SOT) recipients wish to have children after transplantation. Contraception is an important component of post-transplant planning and care, given the increased risk associated with post-transplant pregnancies. We sought to understand patient attitudes and concerns about post-transplant contraception and pregnancy. METHODS: Following a comprehensive literature review, our team developed a survey that was administered to female SOT recipients of childbearing age. We used descriptive and inferential statistics to characterize participant views RESULTS: A total of 243 transplant recipients completed the survey (80.7% response rate). The mean age of respondents was 37.5 years (±8.1 years), 66.7% were kidney recipients, and 40.7% were within the first year after transplant. The most common concerns among respondents included fetal and maternal health complications. Participants generally did not agree that transplant recipients should be advised to avoid pregnancy. There was strong support for shared decision-making about pregnancy after transplantation CONCLUSION: Understanding patient perspectives can help transplant providers make better care recommendations and support patient autonomy in reproductive decisions post-transplant. Given that there are some differences in views by transplant type, individualized conversations between patients and providers are needed.


Asunto(s)
Trasplante de Órganos , Receptores de Trasplantes , Niño , Embarazo , Humanos , Femenino , Adulto , Comunicación , Anticoncepción , Encuestas y Cuestionarios , Trasplante de Órganos/efectos adversos
5.
BMC Pregnancy Childbirth ; 23(1): 848, 2023 Dec 11.
Artículo en Inglés | MEDLINE | ID: mdl-38082419

RESUMEN

BACKGROUND: A growing number of reproductive-age women in the U.S. have chronic medical conditions, increasing their risk of perinatal morbidity and mortality. Still, they experience unintended pregnancies at similar rates to low-risk mothers. We have limited understanding of how these individuals consider decisions about pregnancy and contraceptive use. The purpose of this study was to understand factors that influence reproductive decision-making among pregnant women with chronic medical conditions. METHODS: We conducted 28 semi-structured interviews with pregnant women with pre-existing medical conditions admitted to a tertiary maternal hospital to examine factors influencing reproductive decision making. Maternal demographic characteristics, medical history, and pregnancy outcome data were obtained through participant surveys and abstraction from electronic health records. Interview transcripts were coded and analyzed using Dedoose® with both deductive and inductive content analysis. RESULTS: Out of 33 eligible participants, 30 consented to participate and 28 completed interviews. The majority of participants identified as black, Christian, made less than $23,000 yearly, and had a variety of preexisting medical conditions. Overarching themes included: 1) Perceived risks-benefits of pregnancy, 2) Perceived risks-benefits of birth control, 3) Determinants of contraceptive utilization, and 4) Perceived reproductive self-agency. Contraception was viewed as acceptable, but with concerning physical and psychological side effects. Although some considered pregnancy as a health threat, more experienced pregnancy as positive and empowering. Few planned their pregnancies. CONCLUSIONS: Preexisting health conditions did not significantly influence reproductive decision-making. Barriers to birth control use were generally based in patient value-systems instead of external factors. Interventions to improve uptake and use of birth control in this cohort should focus on improving care for chronic health conditions and influencing patient knowledge and attitudes toward contraception.


Asunto(s)
Anticoncepción , Embarazo no Planeado , Embarazo , Humanos , Femenino , Anticonceptivos , Resultado del Embarazo , Toma de Decisiones , Conducta Anticonceptiva
6.
J Genet Couns ; 32(2): 435-461, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36644818

RESUMEN

Geographical ancestry has been associated with an increased risk of various genetic conditions. Race and ethnicity often have been used as proxies for geographical ancestry. Despite numerous problems associated with the crude reliance on race and ethnicity as proxies for geographical ancestry, some genetic testing in the clinical, research, and employment settings has been and continues to be race- or ethnicity-based. Race-based or race-targeted genetic testing refers to genetic testing offered only or primarily to people of particular racial or ethnic groups because of presumed differences among groups. One current example is APOL1 testing of Black kidney donors. Race-based genetic testing raises numerous ethical and policy questions. Given the ongoing reliance on the Black race in genetic testing, it is important to understand the views of people who identify as Black or are identified as Black (including African American, Afro-Caribbean, and Hispanic Black) regarding race-based genetic testing that targets Black people because of their race. We conducted a systematic review of studies and reports of stakeholder-engaged projects that examined how people who identify as or are identified as Black perceive genetic testing that specifically presumes genetic differences exist among racial groups or uses race as a surrogate for ancestral genetic variation and targets Black people. Our review identified 14 studies that explicitly studied this question and another 13 that implicitly or tacitly studied this matter. We found four main factors that contribute to a positive attitude toward race-targeted genetic testing (facilitators) and eight main factors that are associated with concerns regarding race-targeted genetic testing (barriers). This review fills an important gap. These findings should inform future genetic research and the policies and practices developed in clinical, research, public health, or other settings regarding genetic testing.


Asunto(s)
Población Negra , Etnicidad , Pruebas Genéticas , Humanos , Apolipoproteína L1 , Actitud , Población Negra/genética
7.
Clin Transplant ; 36(1): e14516, 2022 01.
Artículo en Inglés | MEDLINE | ID: mdl-34661305

RESUMEN

It is unknown how providing prospective living donors with information about APOL1, including the benefits and drawbacks of testing, influences their desire for testing. In this study, we surveyed 102 participants with self-reported African ancestry and positive family history of kidney disease, recruited from our nephrology waiting room. We assessed views on APOL1 testing before and after presentation of a set of potential benefits and drawbacks of testing and quantified the self-reported level of influence individual benefits and drawbacks had on participants' desire for testing in the proposed context of living donation. The majority of participants (92%) were aware of organ donation and more than half (56%) had considered living donation. And though we found no significant change in response following presentation of the potential benefits and the drawbacks of APOL1 testing by study end significance, across all participants, "becoming aware of the potential risk of kidney disease among your immediate family" was the benefit with the highest mean influence (3.3±1.4), while the drawback with the highest mean influence (2.9±1.5) was "some transplant centers may not allow you to donate to a loved one". This study provides insights into the priorities of prospective living donors and suggests concern for how the information affects family members may strongly influence desires for testing. It also highlights the need for greater community engagement to gain a deeper understanding of the priorities that influence decision making on APOL1 testing.


Asunto(s)
Apolipoproteína L1 , Trasplante de Riñón , Negro o Afroamericano , Apolipoproteína L1/genética , Actitud , Pruebas Genéticas , Humanos , Donadores Vivos , Estudios Prospectivos
8.
Pediatr Blood Cancer ; 69(10): e29813, 2022 10.
Artículo en Inglés | MEDLINE | ID: mdl-35719025

RESUMEN

BACKGROUND: Clinicians have an ethical and practical imperative to engage adolescents and young adults (AYAs) with cancer in communication and care. Many young AYAs have involved parents, but guidelines for co-management of care with AYAs and their parents are lacking. METHODS: We performed 37 semistructured interviews with AYAs aged 12-24 years at diagnosis, recruiting them from two pediatric cancer centers. We performed thematic analysis, aiming to understand how AYAs and their parents navigate their roles in communication and care. RESULTS: We identified six roles that AYAs co-managed with their parents: (1) managing information, (2) managing social and emotional needs, (3) managing health, (4) advocating and empowering, (5) making decisions, and (6) managing logistics. AYAs tended to take more active roles in managing information and more passive roles in managing logistics, managing health, and making decisions. AYAs described how they and their parents had mutual responsibilities to be strong and to protect other's emotions. Additionally, we identified five factors that influenced AYAs' roles in communication and care: (1) AYA agency, (2) clinician encouragement, (3) emotional and physical well-being, (4) personality, preferences, and values, and (5) insights and skills. CONCLUSIONS: AYAs have nuanced preferences for how they are involved in communication and care roles. Clinicians can help families to clarify their preferences and values around these roles in a way that meets each family's unique needs. Future studies should aim to develop tools that support the fulfillment of these engagement goals.


Asunto(s)
Oncología Médica , Neoplasias , Adolescente , Niño , Comunicación , Toma de Decisiones , Humanos , Neoplasias/psicología , Neoplasias/terapia , Padres/psicología , Adulto Joven
9.
Pediatr Blood Cancer ; 69(1): e29405, 2022 01.
Artículo en Inglés | MEDLINE | ID: mdl-34662485

RESUMEN

Multiple factors can facilitate or impede the fulfillment of communication functions in pediatric cancer. In this systematic review, we evaluated 109 studies from the preceding 20 years that presented qualitative or quantitative evidence of barriers or facilitators to communication in pediatric cancer. Using a multilevel framework developed in our prior study, we then analyzed and categorized the levels of barriers and facilitators identified in included studies. The vast majority of studies focused on individual-level barriers, rather than team, organization/system, collaborating hospital, community, or policy-level barriers. Future studies should explore the full range of factors that affect communication.


Asunto(s)
Comunicación , Neoplasias , Niño , Barreras de Comunicación , Humanos , Oncología Médica , Neoplasias/terapia , Investigación Cualitativa
10.
Pediatr Blood Cancer ; 69(4): e29588, 2022 04.
Artículo en Inglés | MEDLINE | ID: mdl-35092342

RESUMEN

BACKGROUND: Communication is central to patient-centered care in adolescent and young adult (AYA) cancer. Previously, we developed a functional communication model from perspectives of parents whose children had cancer. No prior studies have established a framework for the breadth of communication functions in AYA oncology. We aimed to identify these communication functions from AYAs' perspectives. METHODS: Semistructured interviews with 37 AYAs with cancer aged 12-24 years at diagnosis from two pediatric centers during treatment or survivorship. We performed thematic analysis, using a functional communication model as an a priori framework, but remaining open to novel themes. RESULTS: We identified eight interdependent functions of communication in AYA oncology that were consistent with those previously identified among parents: building relationships, exchanging information, enabling family self-management, making decisions, managing uncertainty, responding to emotions, providing validation, and supporting hope. AYAs held varying preferences for engagement in different communication functions. While some AYAs preferred very passive or active roles, most AYAs described an interdependent process of communication involving them, their parents, and their clinicians. Parents often served as a conduit and buffer of communication between the AYA and clinician. CONCLUSIONS: Interviews with AYAs provided evidence for eight interdependent communication functions in AYA oncology. Many AYAs described the integral role of parents in communication regardless of their age. Clinicians can use this framework to better understand and fulfill the communication needs of AYA patients. Future work should aim to measure and intervene upon these functions to improve communication experiences for AYAs with cancer.


Asunto(s)
Oncología Médica , Neoplasias , Adolescente , Niño , Comunicación , Humanos , Neoplasias/psicología , Neoplasias/terapia , Padres , Incertidumbre , Adulto Joven
11.
Cancer ; 127(12): 2130-2138, 2021 06 15.
Artículo en Inglés | MEDLINE | ID: mdl-33598930

RESUMEN

BACKGROUND: Communication serves several functions in pediatric oncology, but communication deficiencies persist. Little is known about the broad spectrum of barriers contributing to these deficiencies. Identifying these barriers will support new strategies to improve communication. METHODS: The authors performed 10 focus groups on perceived communication barriers with nurses, nurse practitioners, physicians, and psychosocial professionals across 2 academic institutions. They analyzed transcripts by adapting a multilevel framework from organizational psychology. RESULTS: The authors identified 6 levels of barriers to communication from the clinicians' perspectives: individual, team, organization, collaborating hospital, community, and policy. Individual barriers were subdivided into clinician characteristics, family characteristics, or characteristics of the clinician-family interaction. Within each level and sublevel, several manifestations of barriers were identified. Some barriers, such as a lack of comfort with difficult topics (individual), cultural differences (individual), a lack of a shared team mental model (team), and time pressure (organization), manifested similarly across professions and institutions. Other barriers, such as a need for boundaries (individual), intimidation or embarrassment of family (individual), unclear roles and authority (team), and excessive logistical requirements (policy), manifested differently across professions. With the exception of collaborating hospitals, participants from all professions identified barriers from each level. Physicians did not discuss collaborating hospital barriers. CONCLUSIONS: Nurses, nurse practitioners, physicians, and psychosocial professionals experience communication barriers at multiple levels, which range from individual- to policy-level barriers. Yet their unique clinical roles and duties can lead to different manifestations of some barriers. This multilevel framework might help clinicians and researchers to identify targets for interventions to improve communication experiences for families in pediatric oncology. LAY SUMMARY: Clinicians and families experience many barriers to communication in pediatric oncology. The authors performed 10 focus groups with 59 clinicians who cared for children with cancer. In these focus groups, barriers to effective communication were discussed. In this article, the authors report on an analysis of the responses. Six levels of barriers to communication were found: individual, team, organization, collaborating hospital, community, and policy. With an understanding of these barriers, interventions can be developed to target these barriers in hopes of improving communication for parents and patients in pediatric oncology.


Asunto(s)
Neoplasias , Médicos , Niño , Comunicación , Barreras de Comunicación , Humanos , Oncología Médica , Neoplasias/terapia , Padres
12.
Pediatr Blood Cancer ; 68(8): e29052, 2021 08.
Artículo en Inglés | MEDLINE | ID: mdl-33861026

RESUMEN

BACKGROUND: Parents and clinicians of children with cancer can provide advice to improve communication that reflects lessons learned through experience. We aimed to identify categories of communication advice offered to parents of children with cancer from clinicians and other parents. PROCEDURE: (1) Semi-structured interviews with 80 parents of children with cancer at three sites; (2) single-item, open-ended survey administered following 10 focus groups with 58 pediatric oncology clinicians at two sites. We asked participants for communication advice to parents, and analyzed responses using semantic content analysis. RESULTS: Parents provided five categories of communication advice to other parents. Advocacy involved asking questions, communicating concerns, and speaking up for the child. Support involved pursuing self-care, seeking and accepting help, and identifying supportive communities. Managing information involved taking and organizing notes, remaining open to difficult truths, and avoiding inaccurate information. Partnership involved establishing open lines of communication with clinicians, making the family's values and priorities known, and trusting the clinical team. Engaging and supporting the child involved, understanding and incorporating the child's preferences and values, and creating a loving environment. Clinicians' advice addressed similar categories, although only one clinician described engaging and supporting the child. Furthermore, parental advice expanded beyond interactions with the clinical team, whereas clinician advice focused more on the role of clinicians. CONCLUSIONS: Parents and clinicians of children with cancer provided five categories of communication advice. With these data, clinicians, health care organizations, support groups, and patient advocates could offer experience-informed advice to parents who are seeking information and support.


Asunto(s)
Comunicación , Neoplasias , Padres , Niño , Grupos Focales , Humanos , Oncología Médica , Neoplasias/terapia , Relaciones Médico-Paciente
13.
Support Care Cancer ; 29(9): 4957-4968, 2021 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-33569673

RESUMEN

PURPOSE: Communication is essential to providing family-centered care in pediatric oncology. Previously, we developed a functional model of communication between parents and clinicians. Prior research has not examined the domains and purposes of communication between children and clinicians. We explored parental perspectives to begin understanding this communication. METHODS: Secondary analysis of semi-structured interviews with 80 parents of children with cancer across 3 academic medical centers during treatment, survivorship, or bereavement. We employed semantic content analysis, using the functional model of parental communication as an a priori framework. RESULTS: We identified 6 distinct functions of communication in child-clinician interactions: building relationships, promoting patient engagement, addressing emotions, exchanging information, managing uncertainty, and fostering hope. These communication functions were identified by parents of older (> 13 years old) and younger (< 12 years old) children, although the specific manifestations sometimes differed by age. Notably, age was not always an indicator of the child's communication needs. For example, some parents noted older children who did not want to discuss difficult topics, whereas other parent described younger children who wanted to know every detail. Two functions from the previous parental model of communication were absent from this analysis: supporting family self-management and making decisions. CONCLUSION: Interviews with 80 parents provided evidence for 6 distinct functions of communication between children and clinicians. These functions apply to older and younger children, although specific manifestations might vary by age. This functional model provides a framework to guide clinicians' communication efforts and future communication research.


Asunto(s)
Comunicación , Neoplasias , Adolescente , Adulto , Aflicción , Niño , Femenino , Humanos , Masculino , Oncología Médica , Persona de Mediana Edad , Neoplasias/terapia , Padres , Investigación Cualitativa , Adulto Joven
14.
BMC Med Inform Decis Mak ; 21(1): 221, 2021 07 20.
Artículo en Inglés | MEDLINE | ID: mdl-34284756

RESUMEN

BACKGROUND: Healthcare is expected to increasingly integrate technologies enabled by artificial intelligence (AI) into patient care. Understanding perceptions of these tools is essential to successful development and adoption. This exploratory study gauged participants' level of openness, concern, and perceived benefit associated with AI-driven healthcare technologies. We also explored socio-demographic, health-related, and psychosocial correlates of these perceptions. METHODS: We developed a measure depicting six AI-driven technologies that either diagnose, predict, or suggest treatment. We administered the measure via an online survey to adults (N = 936) in the United States using MTurk, a crowdsourcing platform. Participants indicated their level of openness to using the AI technology in the healthcare scenario. Items reflecting potential concerns and benefits associated with each technology accompanied the scenarios. Participants rated the extent that the statements of concerns and benefits influenced their perception of favorability toward the technology. Participants completed measures of socio-demographics, health variables, and psychosocial variables such as trust in the healthcare system and trust in technology. Exploratory and confirmatory factor analyses of the concern and benefit items identified two factors representing overall level of concern and perceived benefit. Descriptive analyses examined levels of openness, concern, and perceived benefit. Correlational analyses explored associations of socio-demographic, health, and psychosocial variables with openness, concern, and benefit scores while multivariable regression models examined these relationships concurrently. RESULTS: Participants were moderately open to AI-driven healthcare technologies (M = 3.1/5.0 ± 0.9), but there was variation depending on the type of application, and the statements of concerns and benefits swayed views. Trust in the healthcare system and trust in technology were the strongest, most consistent correlates of openness, concern, and perceived benefit. Most other socio-demographic, health-related, and psychosocial variables were less strongly, or not, associated, but multivariable models indicated some personality characteristics (e.g., conscientiousness and agreeableness) and socio-demographics (e.g., full-time employment, age, sex, and race) were modestly related to perceptions. CONCLUSIONS: Participants' openness appears tenuous, suggesting early promotion strategies and experiences with novel AI technologies may strongly influence views, especially if implementation of AI technologies increases or undermines trust. The exploratory nature of these findings warrants additional research.


Asunto(s)
Inteligencia Artificial , Atención a la Salud , Adulto , Tecnología Biomédica , Humanos , Percepción , Encuestas y Cuestionarios
15.
J Acad Ethics ; 19(2): 139-156, 2021 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-34177401

RESUMEN

This article demonstrates how instructors of professionalism and ethics training programs can integrate a professional decision-making tool in training curricula. This tool can help trainees understand how to apply professional decision-making strategies to address the threats posed by a variety of psychological and environmental factors when they are faced with complex professional and ethical situations. We begin by highlighting key decision-making frameworks and discussing factors that may undermine the use of professional decision-making strategies. Then, drawing upon findings from past research, we present the "SMART" professional decision-making framework: seeking help, managing emotions, anticipating consequences, recognizing rules and context, and testing assumptions and motives. Next, we present a vignette that poses a complex ethical and professional challenge and illustrate how each professional decision-making strategy could or should be used by characters in the case. To conclude, we review a series of educational practices and pedagogical tools intended to help trainers facilitate trainee learning, retention, and application of "SMART" decision-making strategies.

16.
Clin Trials ; 17(2): 166-175, 2020 04.
Artículo en Inglés | MEDLINE | ID: mdl-31984765

RESUMEN

BACKGROUND: Good Clinical Practice is an international standard for the design and conduct of clinical trials to ensure ethical and scientific integrity. Recent National Institutes of Health policy mandates Good Clinical Practice training for all investigators and staff involved in National Institutes of Health-funded clinical trials, yet approaches to Good Clinical Practice training vary widely. There are limited data on Good Clinical Practice knowledge among the clinical trial workforce and no evidence regarding effective methods to learn Good Clinical Practice. METHODS: We used an exploratory sequential mixed-methods design. We conducted 18 exploratory qualitative interviews with clinical research coordinators to help inform the development of the quantitative survey. We then administered a validated 32-item, multiple-choice test of Good Clinical Practice knowledge with a survey of work and training experiences to 625 clinical research coordinators at three academic medical centers in the United States. Variables that were significantly associated with Good Clinical Practice knowledge were entered into a multiple regression analysis to identify unique predictors of Good Clinical Practice knowledge. We controlled for verbal-numerical reasoning and learning orientation. RESULTS: During qualitative interviews, clinical research coordinators reported that formal Good Clinical Practice training had value but they simultaneously emphasized the importance of experience, day-to-day practice, and observing colleagues and mentors as essential to supplement formal training. In our quantitative survey, five variables predicted a total of 22% of variance in Good Clinical Practice knowledge scores: years of experience as a clinical research coordinator, working on diverse types of trials, supporting industry-funded trials, being certified in clinical research coordination, and aggregated hours of online and face-to-face training (in that order). CONCLUSION: The duration and richness of experience as a clinical research coordinator were the strongest predictors of Good Clinical Practice knowledge, a finding consistent with our exploratory qualitative interview results. Our findings suggest that formal online and face-to-face training has a minimal influence on Good Clinical Practice knowledge. The type of training-whether online or face to face-does not make a significant difference in Good Clinical Practice knowledge scores. Much of the variance in Good Clinical Practice knowledge remains unexplained, calling for further research in this area.


Asunto(s)
Ensayos Clínicos como Asunto/normas , Conocimientos, Actitudes y Práctica en Salud , Investigadores/educación , Adolescente , Adulto , Anciano , Investigación Biomédica , Femenino , Humanos , Masculino , Persona de Mediana Edad , Proyectos de Investigación , Investigadores/psicología , Investigadores/normas , Encuestas y Cuestionarios , Estados Unidos , Adulto Joven
17.
Am J Bioeth ; 20(4): 62-70, 2020 05.
Artículo en Inglés | MEDLINE | ID: mdl-32208070

RESUMEN

We argue that once a normative claim is developed, there is an imperative to effect changes based on this norm. As such, ethicists should adopt an "implementation mindset" when formulating norms, and collaborate with others who have the expertise needed to implement policies and practices. To guide this translation of norms into practice, we propose a framework that incorporates implementation science into ethics. Implementation science is a discipline dedicated to supporting the sustained enactment of interventions. We further argue that implementation principles should be integrated into the development of specific normative claims as well as the enactment of these norms. Ethicists formulating a specific norm should consider whether that norm can feasibly be enacted because the resultant specific norm will directly affect the types of interventions subsequently developed. To inform this argument, we will describe the fundamental principles of implementation science, using informed consent to research participation as an illustration.


Asunto(s)
Discusiones Bioéticas , Teoría Ética , Eticistas/normas , Ciencia de la Implementación , Humanos , Consentimiento Informado/ética
18.
Cancer ; 125(8): 1365-1372, 2019 04 15.
Artículo en Inglés | MEDLINE | ID: mdl-30602060

RESUMEN

BACKGROUND: Despite growing evidence and support for shared decision making, little is known about the experiences of parents who hold more active roles than they wish. METHODS: This was a prospective cohort study of 372 parents of children with cancer and their oncologists at 2 academic pediatric hospitals. Parents were surveyed within 12 weeks of the diagnosis, and they were assessed for associated factors and outcomes of holding a more active decision-making role than they preferred. Parents were asked about their preferred and actual roles in decision making. Oncologists were asked to estimate parental preferences. RESULTS: Most parents preferred to share decision making with the oncologist (64% [236 of 372]); however, 13% (49 of 372) preferred oncologist-led decision making. Most parents fulfilled their ideal decision-making role (66% [244 of 372]), but a notable minority were either more involved (14% [52 of 372]) or less involved than they preferred (20% [76 of 372]; P < .0001 [McNemar test]). Oncologists recognized parents' preferred roles in 49% of cases (167 of 341); 24% (82 of 341) of parents preferred more active roles than the oncologist recognized, and 27% (92 of 341) preferred less active roles than recognized. No parent or communication characteristics were found that were associated with parents' holding a more active role than desired in decision making. Parents who held more active roles in decision making than they wished had higher odds of decisional regret (odds ratio, 3.75; 95% confidence interval, 2.07-6.80; P < .0001). CONCLUSIONS: Although many parents fulfill their desired roles in decision making about their child's cancer, some are asked to take on more active roles than they wish. Holding a more active role than desired may lead to increased decisional regret.


Asunto(s)
Toma de Decisiones Conjunta , Neoplasias/psicología , Padres/psicología , Niño , Femenino , Humanos , Masculino , Estudios Prospectivos , Encuestas y Cuestionarios
19.
Am J Kidney Dis ; 74(4): 538-543, 2019 10.
Artículo en Inglés | MEDLINE | ID: mdl-30982552

RESUMEN

The presence of 2 apolipoprotein L1 gene (APOL1) risk variants is associated with increased risk for chronic kidney disease and end-stage kidney disease. Inferior allograft outcomes following transplantation with kidneys from donors with 2 risk variants have also been reported. These data, coupled with anecdotal case reports and a recent cohort study of living donors, raise important questions about the potential increased kidney disease risk for living donors with APOL1 risk variants and the need for testing as part of the standard living donor evaluation process. We identify a series of questions that are central to the development of clinical policy regarding APOL1 testing of potential living kidney donors given the current uncertainty over the clinical implications of having 2 risk variants. We explore the ethical challenges that arise when determining when and to whom APOL1 testing should be offered, what potential donors should be told about APOL1 testing, how test results should be used to determine suitability for donation, if and when recipients should have access to results, and how clinical policy regarding APOL1 testing should be established.


Asunto(s)
Apolipoproteína L1/genética , Pruebas Genéticas/métodos , Fallo Renal Crónico/genética , Fallo Renal Crónico/cirugía , Trasplante de Riñón/métodos , Donadores Vivos , Pruebas Genéticas/ética , Pruebas Genéticas/normas , Humanos , Fallo Renal Crónico/diagnóstico , Trasplante de Riñón/ética , Trasplante de Riñón/normas , Donadores Vivos/ética
20.
Am J Bioeth ; 19(1): 16-34, 2019 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-30676904

RESUMEN

Serious ethical violations in medicine, such as sexual abuse, criminal prescribing of opioids, and unnecessary surgeries, directly harm patients and undermine trust in the profession of medicine. We review the literature on violations in medicine and present an analysis of 280 cases. Nearly all cases involved repeated instances (97%) of intentional wrongdoing (99%), by males (95%) in nonacademic medical settings (95%), with oversight problems (89%) and a selfish motive such as financial gain or sex (90%). More than half of cases involved a wrongdoer with a suspected personality disorder or substance use disorder (51%). Despite clear patterns, no factors provide readily observable red flags, making prevention difficult. Early identification and intervention in cases requires significant policy shifts that prioritize the safety of patients over physician interests in privacy, fair processes, and proportionate disciplinary actions. We explore a series of 10 questions regarding policy, oversight, discipline, and education options. Satisfactory answers to these questions will require input from diverse stakeholders to help society negotiate effective and ethically balanced solutions.


Asunto(s)
Análisis Ético , Ética Médica , Prescripción Inadecuada/estadística & datos numéricos , Licencia Médica/legislación & jurisprudencia , Mala Praxis/estadística & datos numéricos , Médicos/legislación & jurisprudencia , Mala Conducta Profesional/estadística & datos numéricos , Delitos Sexuales/estadística & datos numéricos , Disciplina Laboral , Humanos , Prescripción Inadecuada/ética , Prescripción Inadecuada/legislación & jurisprudencia , Licencia Médica/ética , Licencia Médica/estadística & datos numéricos , Mala Praxis/legislación & jurisprudencia , Médicos/ética , Mala Conducta Profesional/ética , Mala Conducta Profesional/legislación & jurisprudencia , Delitos Sexuales/ética , Delitos Sexuales/legislación & jurisprudencia , Estados Unidos
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