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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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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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Saúde Digital , Neoplasias da Próstata , Confiança , Adulto , Humanos , Masculino , Grupos Focais , Negro ou Afro-AmericanoRESUMO
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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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 , Autoeficácia , Humanos , Estudos Transversais , Comunicação , Inquéritos e QuestionáriosRESUMO
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 ou Afro-Americano/estatística & dados numéricos , Informação de Saúde ao Consumidor , Hispânico ou Latino/estatística & dados numéricos , Internet , Neoplasias da Próstata/etnologia , Humanos , Masculino , Estados UnidosRESUMO
BACKGROUND: Studies have demonstrated that Black men may undergo definitive prostate cancer (CaP) treatment less often than men of other races, but it is unclear whether they are avoiding overtreatment of low-risk disease or experiencing a reduction in appropriate care. The authors' aim was to assess the role of race as it relates to treatment benefit in access to CaP treatment in a single-payer population. METHODS: The authors used the Veterans Health Administration (VHA) Corporate Data Warehouse to perform a retrospective cohort study of veterans diagnosed with low- or intermediate-risk CaP between 2011 and 2017. RESULTS: The authors identified 35,427 men with incident low- or intermediate-risk CaP. When they controlled for covariates, Black men had 1.05 times the odds of receiving treatment in comparison with non-Black men (P < .001), and high-treatment-benefit men had 1.4 times the odds of receiving treatment in comparison with those in the low-treatment-benefit group (P < .001). The interaction of race and treatment benefit was significant, with Black men in the high-treatment-benefit category less likely to receive treatment than non-Black men in the same treatment category (odds ratio, 0.89; P < .001). CONCLUSIONS: Although race does appear to influence the receipt of definitive treatment in the VHA, this relationship varies in the context of the patient's treatment benefit, with Black men receiving less definitive treatment in high-benefit situations. The influence of patient race at high treatment benefit levels invites further investigation into the driving forces behind this persistent disparity in this consequential group.
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Neoplasias da Próstata , Veteranos , Negro ou Afro-Americano , População Negra , Humanos , Masculino , Neoplasias da Próstata/epidemiologia , Neoplasias da Próstata/terapia , Estudos Retrospectivos , Saúde dos VeteranosRESUMO
The use of online medical records has increased over time and may enhance patient involvement in medical decisions. We explored sociodemographic, medical condition, and digital health correlates of using online medical records to support medical decision making. Cross-sectional data from the 2019 Health Information National Trends Survey (HINTS 5, Cycle 3, N = 5438) were analyzed. Final analyses included participants who accessed their online medical records within 12 months and had complete data for all variables (n = 1807). The outcome was, "In the past 12 months have you used your online medical record to help you make a decision about how to treat an illness or condition (yes/no)?" Univariate and multivariate odds ratios and 95% confidence intervals were calculated. Multivariately, the odds of using online medical records to support medical decision making were significantly higher for individuals who (a) used online medical records to securely send messages to health care providers, (b) used a smartphone health app to access their online medical records, (c) had online medical records that contained clinical notes, (d) reported that online medical records were useful for monitoring health, and (e) self-identified as African American, Asian, or "Other." Online medical records may support medical decision making depending on the context.
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Tomada de Decisão Clínica , Registros Eletrônicos de Saúde , Adulto , Estudos Transversais , Tomada de Decisões , Humanos , Participação do Paciente , Inquéritos e QuestionáriosRESUMO
The COVID-19 pandemic has magnified the importance of clinical trials for finding a safe and effective vaccine to protect against severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the virus that causes COVID-19. Although communication about vaccines and vaccine hesitancy were challenges long before COVID-19, the twin facts of a pandemic and an "infodemic" of health information, misinformation, and disinformation have raised new challenges for vaccine-related communication and decision-making. The goal of this commentary is to highlight strategies to improve communication and decision-making for adults considering participation in COVID-19 vaccine clinical trials. First, I present a general conceptual model for clinical trial participation that can be applied to various vaccine and other clinical trial contexts. Next, I introduce the ASK (Assume, Seek, Know) approach for enhancing clinical trial participation: (1) assume that all patients will want to know their options, (2) seek the counsel of stakeholders, and (3) know your numbers. The ideas presented in this commentary are intended to enhance vaccine-specific clinical trial communication, decision-making, and literacy, while dually offering strategies and resources that may help reduce vaccine hesitancy and increase vaccine uptake over time.
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Vacinas contra COVID-19/uso terapêutico , COVID-19/prevenção & controle , Tomada de Decisões , Comunicação em Saúde/métodos , Ensaios Clínicos Controlados Aleatórios como Assunto , Sujeitos da Pesquisa/psicologia , Adulto , Conhecimentos, Atitudes e Prática em Saúde , Letramento em Saúde , Humanos , Intenção , Seleção de Pacientes , Ensaios Clínicos Controlados Aleatórios como Assunto/métodos , Ensaios Clínicos Controlados Aleatórios como Assunto/psicologiaRESUMO
Despite the promise of clinical trials for improving cancer care, less than 5% of all cancer patients participate. Racial/ethnic minorities continue to be underrepresented in cancer clinical trials (CCTs). To address this gap, we developed a plain language, web-based decision support tool (CHOICES DST) in English and Spanish to support decision-making about CCTs among Blacks and Hispanics. In phase 1 (information collection), we conducted qualitative interviews with 45 cancer patients, completed a thorough literature review, and reviewed results from a telephone survey of 1100 cancer patients. In phase 2 (content generation), we created the first iteration of the CHOICES DST. In phase 3 (usability testing), we gathered user experience and acceptability data from a small sample of cancer survivors (n = 9). The Knowledge, Empowerment, and Values Clarification (KEV) model of decision-making was developed based on data from phase 1. The KEV model and other phase 1 data allowed us to create the CHOICES DST platform. Usability testing of the CHOICES DST showed highly favorable responses from users, satisfaction with content, ease of navigation, and a desire to use the tool. Qualitative results identified addressable points that would benefit from content and navigation-related alterations. The final version of the CHOICES DST was well received and understood by Black and Hispanic participants, and adheres to the mandates for plain language communication. This research provides preliminary data that CHOICES DST holds promise for improving knowledge of CCTs and potentially improving informed decision-making about participation in trials.
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Comunicação , Tomada de Decisões , Letramento em Saúde , Idioma , Grupos Minoritários/psicologia , Neoplasias/terapia , Educação de Pacientes como Assunto , Pesquisa Biomédica , Comportamento de Escolha , Ensaios Clínicos como Assunto , Etnicidade/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Neoplasias/psicologia , Participação do PacienteRESUMO
BACKGROUND: The Mobile Insulin Titration Intervention (MITI) program helps patients with type 2 diabetes find their correct basal insulin dose without in-person care. Requiring only basic cell phone technology (text messages and phone calls), MITI is highly accessible to patients receiving care in safety-net settings. MITI was shown in a randomized controlled trial (RCT) to be efficacious at a New York City (NYC) safety-net clinic where patients often have challenges coming for in-person care. In 2016, MITI was implemented as usual care at Bellevue Hospital (the site of the original RCT) and at Gouverneur Health (a second NYC safety-net clinic) under 2 different staffing models. OBJECTIVE: This implementation study examined MITI's transition into real-world settings. To understand MITI's flexibility, generalizability, and acceptability among patients and providers, we evaluated whether MITI continued to produce positive outcomes in expanded underserved populations, outside of an RCT setting. METHODS: Patients enrolled in MITI received weekday text messages asking for their fasting blood glucose (FBG) values and a weekly titration call. The goal was for patients to reach their optimal insulin dose (OID), defined either as the dose of once-daily basal insulin required to achieve either an FBG of 80-130 mg/dL (4.4-7.2 mmol/L) or as the reaching of the maximum dose of 50 units. After 12 weeks, if OID was not reached, the patients were asked to return to the clinic for in-person care and titration. MITI program outcomes, clinical outcomes, process outcomes, and patient satisfaction were assessed. RESULTS: MITI was successful at both sites, each with a different staffing model. Providers referred 170 patients to the program-129 of whom (75.9%, 129/170) were eligible. Of these, 113 (87.6%, 113/129) enrolled. Moreover, 84.1% (95/113) of patients reached their OID, and they did so in an average of 24 days. Clinical outcomes show that mean FBG levels fell from 209 mg/dL (11.6 mmol/L) to 141 mg/dL (7.8 mmol/L), P<.001. HbA1c levels fell from 11.4% (101 mmol/mol) to 10.0% (86 mmol/mol), P<.001. Process outcomes show that 90.1% of MITI's text message prompts received a response, nurses connected with patients 81.9% of weeks to provide titration instructions, and 85% of attending physicians made at least one referral to the MITI program. Satisfaction surveys showed that most patients felt comfortable sharing information over text and felt the texts reminded them to take their insulin, check their sugar, and make healthy food choices. CONCLUSIONS: This implementation study showed MITI to have continued success after transitioning from an RCT program into real-world settings. MITI showed itself to be flexible and generalizable as it easily fits into a second site staffed by general medical clinic-registered nurses and remained acceptable to patients and staff who had high levels of engagement with the program.
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Diabetes Mellitus Tipo 2/tratamento farmacológico , Implementação de Plano de Saúde/métodos , Disparidades em Assistência à Saúde/normas , Hipoglicemiantes/uso terapêutico , Insulina/uso terapêutico , Telemedicina/métodos , Envio de Mensagens de Texto/instrumentação , Adolescente , Adulto , Idoso , Feminino , Humanos , Hipoglicemiantes/farmacologia , Insulina/farmacologia , Masculino , Pessoa de Meia-Idade , Adulto JovemRESUMO
The objective of this research was to evaluate the impact of message framing (e.g., highlighting health disparities vs. progress toward reducing disparities) on willingness to enroll in a hypothetical research study. African-American (AA, n = 1513) and White (n = 362) adults completed an online survey about diabetes, health behaviors including physical activity, and attitudes about research. AA participants were randomized to view a general message (same message as provided to all White participants) or 1 of 4 alternate messages that framed the need for people to participate in research in terms of race and/or health disparities. Among AAs, there were no differences in willingness to enroll in the study by message frame. However, individual characteristics including younger age, female sex, attitudes about research, a sense of obligation, and community responsibility were significant predictors of willingness to enroll in the study. AA participants who received the general message were equally willing as White participants to enroll in the study. Highlighting race and health disparities in study recruitment materials may not be needed to increase interest among AAs. Factors beyond race appear to be stronger motivators for participation. Unlike previous research, racial framing did not suppress motivation to enroll in our hypothetical study.
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Negro ou Afro-Americano/psicologia , Diabetes Mellitus/etnologia , Comunicação em Saúde/métodos , Aceitação pelo Paciente de Cuidados de Saúde/etnologia , Adulto , Negro ou Afro-Americano/estatística & dados numéricos , Diabetes Mellitus/prevenção & controle , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , População Branca/psicologia , População Branca/estatística & dados numéricosRESUMO
Participation in cancer clinical trials (CCTs) is a key measure for delivery of quality cancer care. Yet, adult cancer patient participation in CCTs remains at about 3%, and participation rates are even lower among ethnic and racial minorities and the medically underserved. Social justice demands better representation of all populations in CCTs to ensure equal access to clinical trials and to ensure greater generalizability of trial results. Using a conceptual framework, this paper outlines a set of guiding principles deemed essential for effective and ethical implementation of community-based education in CCTs. Also described are examples of interventions related to this framework that have been used to overcome key barriers to trial enrollment among underserved populations. Application of the key principles, combined with ongoing engagement of cancer care institutions, suggests promise in enhancing trial participation.
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Ensaios Clínicos como Assunto/estatística & dados numéricos , Pesquisa Participativa Baseada na Comunidade , Neoplasias/prevenção & controle , Educação de Pacientes como Assunto , Participação do Paciente , Seleção de Pacientes , Adulto , HumanosRESUMO
BACKGROUND: This study examined racial/ethnic differences among patients in clinical trial (CT) enrollment, refusal rates, ineligibility, and desire to participate in research within the National Cancer Institute's Community Cancer Centers Program (NCCCP) Clinical Trial Screening and Accrual Log. METHODS: Data from 4509 log entries were evaluated in this study. Four logistic regression models were run using physical/medical conditions, enrollment into a CT, patient eligible but declined a CT, and no desire to participate in research as dependent variables. RESULTS: Age ≥ 65 years (OR = 1.51, 95% CI = 1.28-1.79), males (OR = 2.28, 95% CI = 1.92-2.71), and non-Hispanic black race (OR = 1.53, 95% CI = 1.2-1.96) were significantly associated with more physical/medical conditions. Age ≥ 65 years was significantly associated with lower CT enrollment (OR = 0.83, 95% CI = 0.7-0.98). Males (OR = 0.78, 95% CI = 0.65-0.94) and a higher grade level score for consent form readability (OR = 0.9, 95% CI = 0.83-0.97) were significantly associated with lower refusal rates. Consent page length ≥ 20 was significantly associated with lower odds of "no desire to participate in research" among CT decliners (OR = 0.75, 95% CI = 0.58-0.98). CONCLUSIONS: There were no racial/ethnic differences in CT enrollment, refusal rates, or "no desire to participate in research" as the reason given for CT refusal. Higher odds of physical/medical conditions were associated with older age, males, and non-Hispanic blacks. Better management of physical/medical conditions before and during treatment may increase the pool of eligible patients for CTs. Future work should examine the role of comorbidities, sex, age, and consent form characteristics on CT participation.
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Ensaios Clínicos como Assunto/normas , Neoplasias/tratamento farmacológico , Neoplasias/etnologia , Cooperação do Paciente/etnologia , Seleção de Pacientes , Negro ou Afro-Americano , Idoso , Pesquisa Biomédica , Feminino , Hispânico ou Latino , Humanos , Masculino , Pessoa de Meia-Idade , National Cancer Institute (U.S.) , Taxa de Sobrevida , Estados Unidos , População BrancaRESUMO
BACKGROUND: Despite disproportionate rates of cancer morbidity and mortality among African American men, few community-based efforts have been developed and sustained to educate African American men about cancer. The University of Michigan Comprehensive Cancer Center implemented a series of breakfasts to improve cancer awareness, screening, and education among African American men. This article describes the rationale for and history of the community intervention. COMMUNITY CONTEXT: The 21 breakfasts were held from 2008 through mid-2014 in Ypsilanti and Ann Arbor, Michigan. Ypsilanti ranks below Michigan and the nation on most socioeconomic indicators, although most residents are high school graduates (88% in Ypsilanti and 96.5% in Ann Arbor). African American men in Ypsilanti have higher death rates for diseases associated with poor diet and inadequate physical activity compared with Ypsilanti whites and general populations in Michigan and the nation. METHODS: We conducted a multicomponent qualitative process evaluation including staff meetings, conversations with participants, and focus groups. We collected 425 post-event surveys to evaluate the breakfasts quantitatively. OUTCOMES: Participants were African American (85%), were aged 51 to 70 years (54%), had health insurance (89%), and had some college education (38%). Fifty-three percent of participants reported interest in the breakfast topics including nutrition; 46%, prostate cancer; 34%, colorectal cancer, and 32%, pain management; 62% reported willingness to participate in a clinical trial. INTERPRETATION: African American men are interested in learning about health and are willing to attend a health-focused breakfast series. The Men's Fellowship Breakfast is a promising strategy for bringing men together to discuss cancer screening and risk reduction.
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Negro ou Afro-Americano , Institutos de Câncer/organização & administração , Neoplasias/prevenção & controle , Desjejum , Educação em Saúde/organização & administração , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Aceitação pelo Paciente de Cuidados de SaúdeRESUMO
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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Saúde Digital , Hipertensão , Humanos , Fatores Sociodemográficos , Assistência Centrada no Paciente/métodos , Comunicação , Comportamento de Busca de InformaçãoRESUMO
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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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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Tomada de Decisão Compartilhada , Detecção Precoce de Câncer , Relações Médico-Paciente , Neoplasias da Próstata , Humanos , Neoplasias da Próstata/diagnóstico , Masculino , Antígeno Prostático Específico/sangue , Participação do PacienteRESUMO
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 ou Afro-Americano , Grupos Focais , Neoplasias da Próstata , Pesquisa Qualitativa , Qualidade de Vida , Humanos , Masculino , Neoplasias da Próstata/terapia , Neoplasias da Próstata/psicologia , Neoplasias da Próstata/etnologia , Negro ou Afro-Americano/psicologia , Pessoa de Meia-Idade , Idoso , Comportamento de Busca de Informação , Uso da Internet , InternetRESUMO
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.