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PURPOSE: Symptom management among patients diagnosed with advanced cancer is a high priority in clinical care that often involves the support of a family caregiver. However, limited studies have examined parallel patient and caregiver symptom burden and associations with their own and each other's quality of life (QOL). This study seeks to identify patient and caregiver symptom clusters and investigate associations between identified clusters and demographic, clinical, and psychosocial factors (cognitive appraisals and QOL). METHODS: This study was a secondary analysis of self-reported baseline survey data collected from a randomized clinical trial of 484 adult advanced cancer patients and their caregivers. Latent class analysis and factor analysis were used to identify symptom clusters. Bivariate statistics tested associations between symptom clusters and demographic, clinical, and psychosocial variables. RESULTS: The most prevalent symptom for patients was energy loss/fatigue and for caregivers, mental distress. Low, moderate, and high symptom burden subgroups were identified at the patient, caregiver, and dyad level. Age, gender, race, income, chronic conditions, cancer type, and treatment type were associated with symptom burden subgroups. Higher symptom burden was associated with more negative appraisals of the cancer and caregiving experience, and poorer QOL (physical, social, emotional, functional, and overall QOL). Dyads whose caregivers had more chronic conditions were more likely to be in the high symptom burden subgroup. CONCLUSION: Patient and caregiver symptom burden influence their own and each other's QOL. These findings reinforce the need to approach symptom management from a dyadic perspective.
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Social media is widely used globally by patients, families of patients, health professionals, scientists, and other stakeholders who seek and share information related to cancer. Despite many benefits of social media for cancer care and research, there is also a substantial risk of exposure to misinformation, or inaccurate information about cancer. Types of misinformation vary from inaccurate information about cancer risk factors or unproven treatment options to conspiracy theories and public relations articles or advertisements appearing as reliable medical content. Many characteristics of social media networks-such as their extensive use and the relative ease it allows to share information quickly-facilitate the spread of misinformation. Research shows that inaccurate and misleading health-related posts on social media often get more views and engagement (e.g., likes, shares) from users compared with accurate information. Exposure to misinformation can have downstream implications for health-related attitudes and behaviors. However, combatting misinformation is a complex process that requires engagement from media platforms, scientific and health experts, governmental organizations, and the general public. Cancer experts, for example, should actively combat misinformation in real time and should disseminate evidence-based content on social media. Health professionals should give information prescriptions to patients and families and support health literacy. Patients and families should vet the quality of cancer information before acting upon it (e.g., by using publicly available checklists) and seek recommended resources from health care providers and trusted organizations. Future multidisciplinary research is needed to identify optimal ways of building resilience and combating misinformation across social media.
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Comunicación , Neoplasias , Medios de Comunicación Sociales , Humanos , Neoplasias/psicología , Neoplasias/terapia , Difusión de la Información/métodosRESUMEN
Black men have a greater risk of prostate cancer as well as worse quality of life and more decisional regret after prostate cancer treatment compared to non-Hispanic White men. Furthermore, patients with prostate cancer who primarily obtain information on the internet have significantly more decisional regret compared to other information sources. Our objective was to explore the perspectives of Black patients on the use and impact of the internet for their prostate cancer care. In 2022-2023, we conducted seven virtual focus groups with Black patients with prostate cancer (n = 22). Transcripts were independently analyzed by two experienced researchers using a constant comparative method. Online sources were commonly used by participants throughout their cancer journey, although informational needs varied over time. Patient factors affected use (e.g., physical health and experience with the internet), and family members played an active role in online information-seeking. The internet was used before and after visits to the doctor. Key topics that participants searched for online included nutrition and lifestyle, treatment options, and prostate cancer in Black men. Men reported many downstream benefits with internet use including feeling more empowered in decision-making, reducing anxiety about treatment and providing greater accountability for research. However, they also reported negative impacts such as feeling overwhelmed or discouraged sorting through the information to identify high-quality content that is personally relevant, as well as increased anxiety or loss of sleep from overuse. In summary, online sources have the potential to positively impact the cancer journey by reinforcing or supplementing information from health care providers, but can be harmful if the information is poor quality, not representative, or the internet is overused.
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Negro o Afroamericano , Grupos Focales , Neoplasias de la Próstata , Investigación Cualitativa , Calidad de Vida , Humanos , Masculino , Neoplasias de la Próstata/terapia , Neoplasias de la Próstata/psicología , Neoplasias de la Próstata/etnología , Negro o Afroamericano/psicología , Persona de Mediana Edad , Anciano , Conducta en la Búsqueda de Información , Uso de Internet , InternetRESUMEN
Introduction: Colorectal cancer is a leading cause of cancer death in the U.S. Until 2021, the U.S. Preventive Services Task Force recommended colorectal cancer screening for all adults aged 50-75 years. Using a nationally representative sample, we explored the associations between having colorectal cancer screening and key sociodemographic and health-related factors among U.S. adults aged 50-75 years. Methods: We analyzed self-reported data from the National Cancer Institute's Health Information National Trends Survey 5 (Cycle 4) collected from February to June 2020. A multivariable weighted logistic regression model was conducted using all of the factors that were univariably significant with p<0.10. Using backward elimination, factors that were not significant with p>0.05 were removed one at a time until the remaining factors were all significant collectively with p<0.05. Results: Complete data were available for 1,649 respondents: 1,384 (81.2% weighted) had a colorectal cancer screening test, and 265 (18.8% weighted) did not. Multivariably, the odds of having had a colorectal cancer screening test increased with age (OR=1.07) and were higher for participants who identified as Black/African American than for White participants (OR=2.4), participants who had a family member who ever had cancer (OR=1.7), participants who believed that being overweight and obese influences development of cancer a lot than those who believed not at all (OR=2.0), and participants who had friends or family to talk with about health (OR=2.3). Conclusions: Age, race, family history, weight-related beliefs about the causes of cancer, and having someone to talk with about health were associated with having colorectal cancer screening test.
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PURPOSE: Although the majority of US adults obtain health information on the internet, the quality of information about prostate cancer is highly variable. Black adults are underrepresented in online content about prostate cancer despite a higher incidence of and mortality from the disease. The goal of this study was to explore the perspectives of Black patients with prostate cancer on the importance of racial representation in online content and other factors influencing trust. MATERIALS AND METHODS: We conducted 7 virtual focus groups with Black patients with prostate cancer in 2022 and 2023. Participants completed an intake questionnaire with demographics followed by a group discussion, including feedback on purposefully selected online content. Transcripts were independently analyzed by 2 investigators experienced in qualitative research using a constant comparative method. RESULTS: Most participants use online sources to look for prostate cancer information. Racial representation is an important factor affecting trust in the content. A lack of Black representation has consequences, including misperceptions about a lower risk of prostate cancer and discouraging further information-seeking. Other key themes affecting trust in online content included the importance of a reputable source of information, professional website structure, and soliciting money. CONCLUSIONS: Underrepresentation of Black adults in prostate cancer content has the potential to worsen health disparities. Optimal online communications should include racially diverse representation and evidence-based information in a professional format from reputable sources without financial conflict.
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Salud Digital , Neoplasias de la Próstata , Confianza , Adulto , Humanos , Masculino , Grupos Focales , Negro o AfroamericanoRESUMEN
Decisions around prostate-specific antigen screening require a patient-centred approach, considering the benefits and risks of potential harm. Using shared decision-making (SDM) can improve men's knowledge and reduce decisional conflict. SDM is supported by evidence, but can be difficult to implement in clinical settings. An inclusive definition of SDM was used in order to determine the prevalence of SDM in prostate cancer screening decisions. Despite consensus among guidelines endorsing SDM practice, the prevalence of SDM occurring before the decision to undergo or forgo prostate-specific antigen testing varied between 11% and 98%, and was higher in studies in which SDM was self-reported by physicians than in patient-reported recollections and observed practices. The influence of trust and continuity in physician-patient relationships were identified as facilitators of SDM, whereas common barriers included limited appointment times and poor health literacy. Decision aids, which can help physicians to convey health information within a limited time frame and give patients increased autonomy over decisions, are underused and were not shown to clearly influence whether SDM occurs. Future studies should focus on methods to facilitate the use of SDM in clinical settings.
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Toma de Decisiones Conjunta , Detección Precoz del Cáncer , Relaciones Médico-Paciente , Neoplasias de la Próstata , Humanos , Neoplasias de la Próstata/diagnóstico , Masculino , Antígeno Prostático Específico/sangre , Participación del PacienteRESUMEN
OBJECTIVE: To simultaneously explore associations between digital health, sociodemographic factors, and medical conditions on patient-centered communication (PCC). These are under-explored, yet important knowledge gaps to fill because perceived quality PCC may influence health information seeking behaviors and health outcomes. METHODS: Data from the 2019 Health Information National Trends Survey were analyzed. The primary outcome was PCC, which was the summed score of 7 PCC-related questions. Factors of interest included whether participants used electronic methods to communicate with health professionals, age, gender, race/ethnicity, education, feelings about household income, and history of medical conditions. Descriptive statistics and linear regressions were conducted. RESULTS: In the multivariate linear regression model, people aged 65-74 years compared with 18-34 year-olds, those with some college compared with college graduates, and those who felt they were living comfortably on their household income compared with all others reported higher PCC scores. People with a history of hypertension compared with those without reported higher PCC scores. CONCLUSION: Similar to past studies, sociodemographic factors were associated with PCC. A novel finding was that a history hypertension was associated with perceived quality of PCC. PRACTICE IMPLICATIONS: This research may inform methods to enhance communication between patients and clinicians.
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Salud Digital , Hipertensión , Humanos , Factores Sociodemográficos , Atención Dirigida al Paciente/métodos , Comunicación , Conducta en la Búsqueda de InformaciónRESUMEN
Importance: Black men have a higher risk of prostate cancer compared with White men, but Black adults are underrepresented in online content about prostate cancer. Across racial groups, the internet is a popular source of health information; Black adults are more likely to trust online health information, yet have more medical mistrust than White adults. Objective: To evaluate the association between racial representation in online content about prostate cancer and trust in the content and identify factors that influence trust. Design, Setting, and Participants: A randomized clinical trial was conducted from August 18, 2021, to January 7, 2022, consisting of a 1-time online survey. Participants included US men and women aged 40 years and older. Data were analyzed from January 2022 to June 2023. Interventions: Participants were randomized to watch the same video script about either prostate cancer screening or clinical trials presented by 1 of 4 speakers: a Black physician, a Black patient, a White physician, or a White patient, followed by a questionnaire. Main Outcomes and Measures: The primary outcome was a published scale for trust in the information. χ2 tests and multivariable logistic regression were used to compare trust according to the video's speaker and topic. Results: Among 2904 participants, 1801 (62%) were men, and the median (IQR) age was 59 (47-69) years. Among 1703 Black adults, a greater proportion had high trust in videos with Black speakers vs White speakers (72.7% vs 64.3%; adjusted odds ratio [aOR], 1.62; 95% CI, 1.28-2.05; P < .001); less trust with patient vs physician presenter (64.6% vs 72.5%; aOR, 0.63; 95% CI, 0.49-0.80; P < .001) and about clinical trials vs screening (66.3% vs 70.7%; aOR, 0.78; 95% CI, 0.62-0.99; P = .04). Among White adults, a lower proportion had high trust in videos featuring a patient vs physician (72.0% vs 78.6%; aOR, 0.71; 95% CI, 0.54-0.95; P = .02) and clinical trials vs screening (71.4% vs 79.1%; aOR, 0.57; 95% CI, 0.42-0.76; P < .001), but no difference for Black vs White presenters (76.8% vs 73.7%; aOR, 1.11; 95% CI, 0.83-1.48; P = .49). Conclusions and Relevance: In this randomized clinical trial, prostate cancer information was considered more trustworthy when delivered by a physician, but racial concordance was significantly associated with trust only among Black adults. These results highlight the importance of physician participation and increasing racial diversity in public dissemination of health information and an ongoing need for public education about clinical trials. Trial Registration: ClinicalTrials.gov Identifier: NCT05886751.
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Neoplasias de la Próstata , Adulto , Masculino , Humanos , Persona de Mediana Edad , Anciano , Confianza , Detección Precoz del Cáncer , Antígeno Prostático Específico , Grupos Raciales , Encuestas y CuestionariosAsunto(s)
Contaminantes Atmosféricos , Contaminación del Aire Interior , Contaminación del Aire , Hipertensión , Adulto , Humanos , Vivienda Popular , Presión Sanguínea , Ciudad de Nueva York/epidemiología , Contaminación del Aire Interior/efectos adversos , Exposición a Riesgos Ambientales , Hipertensión/diagnóstico , Hipertensión/epidemiología , Material Particulado/análisis , Contaminantes Atmosféricos/análisisRESUMEN
Self-efficacy, or confidence, for being able to get cancer information may affect a person's understanding of cancer risk and subsequent cancer-related decisions such as screening, treatment, and genetic testing. In this study, we explored key correlates associated with self-efficacy for getting cancer information. We analyzed cross-sectional data from the 2018 Health Information National Trends Survey (HINTS 5, Cycle 2). There were 3504 responses in the full dataset; 2513 remained after eliminating respondents with incomplete data for all variables of interest. Self-efficacy for getting cancer information was assessed with the item, "Overall, how confident are you that you could get advice or information about cancer if you needed it?" First, we explored correlates associated with self-efficacy in getting cancer information including sociodemographic factors, patient-provider communication, and health-related self-efficacy in the full sample. Secondarily, we examined associations between self-efficacy to get cancer information and cancer information-seeking burden (e.g., difficulty understanding cancer information) in the subset of participants who reported ever looking for cancer-specific information. Descriptive statistics and logistic regressions were conducted. Asian race/ethnicity, higher perceived quality of patient-provider communication, and higher health-related self-efficacy were associated with higher odds of confidence about getting cancer information. In the subset of people who ever sought cancer-specific information, higher patient-provider communication scores, higher health-related self-efficacy, greater difficulty understanding information, greater concern about the quality of information, and greater frustration during the search were associated with higher self-efficacy for getting cancer information. Future research should evaluate strategies to improve cancer information seeking skills.
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Neoplasias , Autoeficacia , Humanos , Estudios Transversales , Comunicación , Encuestas y CuestionariosRESUMEN
OBJECTIVE: Substantial disparities exist in clinical trial participation, which is problematic in diseases such as lupus that disproportionately affect racial/ethnic minority populations. Our objective was to examine the effectiveness of an online educational course aiming to train medical providers to refer Black and Latino patients to lupus clinical trials (LCTs). METHODS: The American College of Rheumatology's Materials to Increase Minority Involvement in Clinical Trials (MIMICT) study used an online, randomized, 2-group, pretest/posttest design with medical and nursing providers of multiple specialties. We exposed intervention group participants to an education course, while the control group participants received no intervention. Controlling for the effects of participant characteristics, including specialty, and professional experience with lupus, we modeled relationships among exposure to the education course and changes in knowledge, attitudes, self-efficacy, and intentions to refer Black and Latino patients to LCTs. We also examined education course satisfaction. RESULTS: Compared to the control group, the intervention group had significantly higher posttest scores for knowledge, self-efficacy, and intentions to refer Black and Latino patients to LCTs. Both medical and nursing trained intervention group participants had significantly higher mean posttest scores for knowledge and intentions to refer compared to the medical and nursing trained control group participants. Attitude was insignificant in analysis. The online education course, which received a favorable summary score, indicated that satisfaction and intentions to refer were strongly and positively correlated. CONCLUSION: The MIMICT education course is an effective method to educate medical providers about LCTs and to improve their intentions to refer Black and Latino patients.
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Etnicidad , Disparidades en Atención de Salud , Lupus Eritematoso Sistémico , Grupos Minoritarios , Selección de Paciente , Humanos , Hispánicos o Latinos , Grupos Raciales , Estados Unidos , Ensayos Clínicos como Asunto , Negro o AfroamericanoRESUMEN
Introduction/Purpose: Efforts to improve chronic disease outcomes among US adults highlight families, particularly support from families, as a key aspect of disease prevention and management. To date, however, an overwhelming focus on individual-level outcomes and unidirectional support (eg, from a family caregiver to an identified care recipient) belies the existence of co-occurring health concerns and interdependent care. There are increasing calls for more sophisticated and intensive family health interventions that better integrate family-level factors, processes, and outcomes to provide comprehensive family support services in health care and community-based settings. Methods: This commentary provides key considerations for advancing this work while centering family health equity and families themselves in health initiatives. Results: Several critical barriers are identified and discussed. For example, a narrow focus on family and inadequate measures of family-level disease burden make it challenging to understand how the disproportionate burden of chronic disease observed among individuals of lower socioeconomic status and certain racial and ethnic groups compounds and complicates family health experiences. In addition, limited attention to the interaction between individuals, families, and broader sociocultural factors that influence family resources and constraints, such as racism, hamper program design, implementation, and evaluation. Conclusion: To center families in efforts to reduce chronic disease disparities, it is necessary to move beyond superficial attention to the complexity of disease prevention and management within the family context. This commentary serves to enhance understanding of important drivers of family-level chronic disease outcomes, while providing important considerations for advancing research and practice.
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Salud de la Familia , Equidad en Salud , Humanos , Enfermedad Crónica/prevención & control , Salud de la Familia/etnología , Estados Unidos , Manejo de la Enfermedad , FamiliaRESUMEN
Electronic health records (EHRs) are often used for recruitment into research studies, as they efficiently facilitate targeted outreach. While studies increasingly are reaching out to potential participants through the EHR patient portal, there is little available information about which approaches are most effective. We surveyed all investigators at one academic medical center who had used the Epic MyChart patient portal for recruitment. We found that messages were typically adapted for a large group, but not tailored further for individual subgroups. The vast majority of studies sent a message only once. Recruitment costs were modest, averaging $431/study. The results show some promise for recruiting through the patient portal but also identified ways in which messages could be optimized.
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BACKGROUND: Social determinants of health (SDOH) refer to the social, economic, and psychosocial conditions that influence health. Lower levels of SDOH factors including income, education, and employment are associated with a higher prevalence of diabetes, poorer glycemic control, and increased diabetes-related mortality. Few studies have conducted a comprehensive evaluation of multiple SDOH factors in a population with type 2 diabetes mellitus (T2DM). OBJECTIVE: This study aimed to identify the range of SDOH challenges-including diabetes-related distress-that impact patients with insulin-dependent diabetes at an urban safety-net clinic using the 5-domain SDOH framework developed by the Healthy People 2020 initiative. METHODS: The pilot study used a cross-sectional, mixed methods approach. Participants were recruited from 3 programs within a general internal medicine clinic that provides ambulatory care for patients with uncontrolled T2DM. We administered an investigator-developed SDOH survey based on the Healthy People 2020 framework and the validated Diabetes Distress Scale (DDS), which assesses 4 domains of diabetes-related distress. One-on-one interviews were conducted to gain in-depth information about challenges. RESULTS: In total, 57 participants had an average hemoglobin A1c level of 11.0% (SD 2.6%). Overall, 92% (52/57) of participants had a barrier in at least one SDOH domain. SDOH challenges were most commonly reported in the domain of Health and Health Care (84%, 48/57), followed by Economic Stability (54%, n=31), Neighborhood and Built Environment (53%, n=30), Education and Health Literacy (47%, n=27), and Social and Community context (37%, n=21). The mean overall DDS score was 2.09 (SD 0.84), where scores of ≥2 indicate distress. Further, 79% (45/57) of participants had at least moderate diabetes-related distress in one of the 4 DDS domains. General themes that emerged from participant interviews included job interference with healthy behaviors, concerns about burdening others, challenges communicating with providers, and difficulty getting appointments in a timely manner. CONCLUSIONS: We found high levels of SDOH barriers across all 5 domains of the Center for Disease Control and Prevention's Healthy People 2020 framework, including significant levels of diabetes-related distress. Future programs to address SDOH barriers in patients with uncontrolled insulin-dependent diabetes should consider screening for and focusing on a wide range of challenges.
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Objective: Social media use has grown over time. However, it is unclear how people with a self-reported history of cardiovascular disease or cardiovascular disease-related risk factors such as diabetes and hypertension use social media. Methods: Data from the 2020 Health Information National Trends Survey (HINTS 5, Cycle 4) were analyzed (N = 3865). Only respondents with complete data for all variables of interest were included in the analyses, resulting in 306 respondents with a heart condition, 1291 with hypertension, and 608 with diabetes. We explored associations between two dependent variables: (1) participated in an online forum or support group and (2) watched a health-related video on YouTube, and sociodemographic factors and patient-provider communication. Analyses were conducted separately by medical condition. Odds ratios, 95% confidence intervals, and p-values were calculated. Results: In respondents with a heart condition, hypertension, or diabetes, 5.4%, 8.4%, and 10.3% had participated in an online support group and 29.6%, 40.4%, and 36.6% had watched health-related videos on YouTube, respectively. Univariately, the odds of using online support groups was associated with younger age (vs. > = 65) in people with a heart condition and hypertension, but not diabetes. Regarding YouTube, younger age was associated with watching health-related videos across all three medical conditions, with additional gender and education associations observed in those with hypertension. There were no associations between social media use and patient-provider communication. Conclusions: These findings may inform the selection of social media platforms for behavioral interventions depending on the intended patient population and goals (e.g. social support vs. video-based health education).
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PURPOSE: Black men have the highest incidence and mortality from prostate cancer (PCa) and lower quality of life compared to other U.S. racial groups. Additionally, more Latinx men are diagnosed with advanced disease and fewer receive guideline-concordant care. As many men seek medical information online, high-quality information targeting diverse populations may mitigate disparities. We examined racial/ethnic representation and information quality in online PCa content. MATERIALS AND METHODS: We retrieved 150 websites and 150 videos about "prostate cancer" using the most widely used search engine (Google) and social network (YouTube). We assessed quality of health information, reading level, perceived race/ethnicity of people featured in the content and discussion of racial/ethnic disparities. RESULTS: Among 81 websites and 127 videos featuring people, 37% and 24% had perceived Black representation, and racial/ethnic disparities were discussed in 27% and 17%, respectively. Among 1,526 people featured, 9% and 1% were perceived as Black and Latinx, respectively. No content with Black or Latinx representation was high quality, understandable, actionable and at the recommended reading level. CONCLUSIONS: Black and Latinx adults are underrepresented in online PCa content. Online media have significant potential for public education and combating health disparities. However, most PCa content lacks diversity and is not readily understandable.
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Negro o Afroamericano/estadística & datos numéricos , Información de Salud al Consumidor , Hispánicos o Latinos/estadística & datos numéricos , Internet , Neoplasias de la Próstata/etnología , Humanos , Masculino , Estados UnidosRESUMEN
BACKGROUND: Knowledge about clinical trials affects efficient and equitable clinical trial recruitment and retention. This study explored correlates of clinical trial knowledge in a nationally representative sample of US adults. METHODS: Cross-sectional data from the 2020 Health Information National Trends Survey (HINTS 5, Cycle 4) were evaluated. There were 3,865 responses in the full dataset; 2,648 remained after eliminating respondents without complete data for all covariates of interest. Participants were asked, "How would you describe your level of knowledge about clinical trials?" The response options "know a little bit" and "know a lot" were combined and compared to the response option "don't know anything." Covariates of interest included patient-provider communication, history of medical conditions, eHealth use, knowledge of clinicaltrials.gov, prior invitation to join a clinical trial, and socio-demographic factors. RESULTS: Participants with a history of cancer were 1.6 times more likely [CI 1.2, 2.2] to have knowledge of clinical trials. Participants who used electronic means to look for health information were 1.7 times more likely [CI 1.2, 2.4] to have knowledge of clinical trials. Participants who had heard of the website clinicaltrials.gov had 5.1 times greater odds of knowing about clinical trials [CI 2.6, 10.3] and 4.5 greater odds if they had been invited to participate in a clinical trial [CI 2.0, 9.8]. College graduates had higher odds than others. CONCLUSION: Several factors affect clinical trial knowledge in US adults. Findings from this study may inform interventions to raise awareness about clinical trials and thereby, potentially improve enrollment.
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Comunicación , Telemedicina , Adulto , Ensayos Clínicos como Asunto , Estudios Transversales , Conocimientos, Actitudes y Práctica en Salud , Humanos , Encuestas y CuestionariosRESUMEN
Randomized controlled trials (RCTs) remain the gold standard to evaluate clinical interventions, producing the highest level of evidence while minimizing potential bias. Inadequate recruitment is a commonly encountered problem that undermines the completion and generalizability of RCTs-and is even more challenging when enrolling amidst a pandemic. Here, we reflect on our experiences with virtual recruitment of non-hospitalized patients in the United States for ColCorona, an international, multicenter, randomized, placebo-controlled coronavirus disease 2019 (COVID-19) drug trial. Recruitment challenges during a pandemic include constraints created by shelter-in-place policies and targeting enrollment according to national and local fluctuations in infection rate. Presenting a study to potential participants who are sick with COVID-19 and may be frightened, overwhelmed, or mistrusting of clinical research remains a challenge. Strategies previously reported to improve recruitment include transparency, patient and site education, financial incentives, and person-to-person outreach. Active measures taken during ColCorona to optimize United States recruitment involved rapid expansion of sites, adjustment of recruitment scripts, assessing telephone calls versus text messages for initial contact with participants, institutional review board-approved financial compensation, creating an infrastructure to systematically identify potentially eligible patients, partnering with testing sites, appealing to both self-interest and altruism, and large-scale media efforts with varying degrees of success.
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COVID-19 , Envío de Mensajes de Texto , COVID-19/epidemiología , Humanos , Estudios Multicéntricos como Asunto , Pandemias , Ensayos Clínicos Controlados Aleatorios como Asunto , SARS-CoV-2 , Estados Unidos/epidemiologíaRESUMEN
Shared decision making (SDM) has been advocated to improve patient care, patient decision acceptance, patient-provider communication, patient motivation, adherence, and patient reported outcomes. Documentation of SDM is endorsed in several society guidelines and is a condition of reimbursement for selected cardiovascular and cardiac arrhythmia procedures. However, many clinicians argue that SDM already occurs with clinical encounter discussions or the process of obtaining informed consent and note the additional imposed workload of using and documenting decision aids without validated tools or evidence that they improve clinical outcomes. In reality, SDM is a process and can be done without decision tools, although the process may be variable. Also, SDM advocates counter that the low-risk process of SDM need not be held to the high bar of demonstrating clinical benefit and that increasing the quality of decision making should be sufficient. Our review leverages a multidisciplinary group of experts in cardiology, cardiac electrophysiology, epidemiology, and SDM, as well as a patient advocate. Our goal is to examine and assess SDM methodology, tools, and available evidence on outcomes in patients with heart rhythm disorders to help determine the value of SDM, assess its possible impact on electrophysiological procedures and cardiac arrhythmia management, better inform regulatory requirements, and identify gaps in knowledge and future needs.