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1.
Cancer Discov ; 14(4): 569-572, 2024 Apr 04.
Artigo em Inglês | MEDLINE | ID: mdl-38571420

RESUMO

SUMMARY: An increased understanding of the role of the social determinants of health in cancer prevention, cancer care, and outcomes can lead to their integration into genetics and genomics as well as informing interventions and clinical trials, creating a comprehensive precision oncology framework.


Assuntos
Neoplasias , Humanos , Neoplasias/terapia , Neoplasias/tratamento farmacológico , Pareamento de Bases , Medicina de Precisão , Oncologia , Genômica
2.
JCO Precis Oncol ; 8: e2300552, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38452310

RESUMO

PURPOSE: Germline genetic testing (GT) is important for prostate cancer (PCA) management, clinical trial eligibility, and hereditary cancer risk. However, GT is underutilized and there is a shortage of genetic counselors. To address these gaps, a patient-driven, pretest genetic education webtool was designed and studied compared with traditional genetic counseling (GC) to inform strategies for expanding access to genetic services. METHODS: Technology-enhanced acceleration of germline evaluation for therapy (TARGET) was a multicenter, noninferiority, randomized trial (ClinicalTrials.gov identifier: NCT04447703) comparing a nine-module patient-driven genetic education webtool versus pretest GC. Participants completed surveys measuring decisional conflict, satisfaction, and attitudes toward GT at baseline, after pretest education/counseling, and after GT result disclosure. The primary end point was noninferiority in reducing decisional conflict between webtool and GC using the validated Decisional Conflict Scale. Mixed-effects regression modeling was used to compare decisional conflict between groups. Participants opting for GT received a 51-gene panel, with results delivered to participants and their providers. RESULTS: The analytic data set includes primary outcome data from 315 participants (GC [n = 162] and webtool [n = 153]). Mean difference in decisional conflict score changes between groups was -0.04 (one-sided 95% CI, -∞ to 2.54; P = .01), suggesting the patient-driven webtool was noninferior to GC. Overall, 145 (89.5%) GC and 120 (78.4%) in the webtool arm underwent GT, with pathogenic variants in 15.8% (8.7% in PCA genes). Satisfaction did not differ significantly between arms; knowledge of cancer genetics was higher but attitudes toward GT were less favorable in the webtool arm. CONCLUSION: The results of the TARGET study support the use of patient-driven digital webtools for expanding access to pretest genetic education for PCA GT. Further studies to optimize patient experience and evaluate them in diverse patient populations are warranted.


Assuntos
Aconselhamento Genético , Neoplasias da Próstata , Humanos , Masculino , Aconselhamento Genético/métodos , Testes Genéticos , Células Germinativas , Conhecimentos, Atitudes e Prática em Saúde , Neoplasias da Próstata/diagnóstico , Neoplasias da Próstata/genética , Neoplasias da Próstata/terapia
3.
Vaccine ; 42(7): 1704-1713, 2024 Mar 07.
Artigo em Inglês | MEDLINE | ID: mdl-38355317

RESUMO

BACKGROUND: In the U.S., uptake of the HPV vaccine remains below coverage goals. There is concern that negative reactions to emergency initiatives during the COVID-19 pandemic, including vaccination, may have increased some parents' hesitancy towards all vaccines, including HPV. Understanding how different parent populations view routine vaccination post-pandemic is key to strategic efforts to maintaining and increasing uptake of HPV vaccine. METHODS: In early 2022, we recruited an online panel of English-speaking U.S. parents and caregivers, who used the social media platform Twitter and had HPV vaccine-eligible but unvaccinated children age 9-14 years. Respondents completed a 20-minute survey measuring knowledge, attitudes and intentions regarding HPV vaccination for their child, as well as background socio-demographics and health information-seeking practices. Questions regarding experiences during the COVID-19 pandemic included changes in access to preventive care, and perceptions of whether pandemic experiences had positively or negatively affected their attitudes about routine vaccination, with open text capturing reasons for this change. RESULTS: Among 557 respondents, 81 % were definitely or likely to vaccinate their child against HPV, with 12 % being uncertain, and 7 % unlikely to vaccinate. Regarding routine vaccination, most (70 %) felt their attitudes had not changed, while 26 % felt more positively, and only 4 % felt more negatively. Reasons for positive attitude change included increased appreciation for vaccines overall, and motivation to proactively seek preventive care for their child. Negative attitude changes stemmed from distrust of COVID-19 public health efforts including vaccine development, and disillusionment with vaccines' ability to prevent disease. In multivariable models, intention to vaccinate was greater among parents reporting greater education, Democratic affiliation, greater religiosity, and urban residence. Negative attitude change due to the pandemic independently predicted reduced HPV vaccination intention, while positive attitude change predicted positive intention. CONCLUSIONS: Post-pandemic, most U.S. parents remain committed to vaccinating their children against HPV. However, addressing residual COVID-19 concerns could improve uptake among vaccine-hesitant parents.


Assuntos
COVID-19 , Infecções por Papillomavirus , Vacinas contra Papillomavirus , Criança , Humanos , Adolescente , Motivação , Infecções por Papillomavirus/prevenção & controle , Pandemias/prevenção & controle , COVID-19/prevenção & controle , Pais , Conhecimentos, Atitudes e Prática em Saúde , Intenção , Vacinação , Vacinas contra Papillomavirus/uso terapêutico
4.
Cancer ; 130(4): 497-504, 2024 Feb 15.
Artigo em Inglês | MEDLINE | ID: mdl-37941524

RESUMO

There is growing interest in cannabis use for cancer pain. This commentary aims to discuss the evidence surrounding cannabis use for cancer pain in the context of the long-racialized landscape of cannabis policies and the disparity in pain control among cancer patients holding minoritized racial identities. Much evidence surrounding both the benefits and harms of cannabis use in cancer patients, and all patients in general, is lacking. Although drawing on the research in cancer that is available, it is also important to illustrate the broader context about how cannabis' deep roots in medical, political, and social history impact patient use and health care policies. There are lessons we can learn from the racialized disparities in opioid risk mitigation strategies, so they are not replicated in the settings of cannabis for cancer symptom management. Additionally, the authors intentionally use the term "cannabis" here rather than "marijuana.: In the early 1900s, the lay press and government popularized the use of the word "marijuana" instead of the more common "cannabis" to tie the drug to anti-Mexican prejudice.


Assuntos
Dor do Câncer , Cannabis , Dor Crônica , Maconha Medicinal , Neoplasias , Humanos , Dor do Câncer/tratamento farmacológico , Maconha Medicinal/uso terapêutico , Dor/tratamento farmacológico , Dor/induzido quimicamente , Analgésicos Opioides/uso terapêutico , Neoplasias/complicações , Neoplasias/epidemiologia , Neoplasias/terapia
5.
Cancer Epidemiol Biomarkers Prev ; 32(12): 1777-1782, 2023 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-37791915

RESUMO

Community outreach and engagement (COE) is a fundamental activity of cancer centers as they aim to reduce cancer disparities in their geographic catchment areas. As part of COE, NCI-Designated Cancer Centers must monitor the burden of cancer in their catchment area, implement and evaluate evidence-based strategies, stimulate catchment area relevant research, support clinical trial enrollment, and participate in policy and advocacy initiatives, in addition to other responsibilities. The Cancer Center Community Impact Forum (CCCIF) is a national annual meeting of COE professionals who work at or with cancer centers across the country. CCCIF grew out of earlier discussions at American Society of Preventive Oncology (ASPO) annual meetings, where COE was often discussed, but not exclusively. The third annual CCCIF meeting-hosted by the Sidney Kimmel Cancer Center at Thomas Jefferson University-was held in June 2022 in Philadelphia, PA, where more than 200 participants listened to dynamic presentations across 12 COE-related panel sessions. CCCIF leadership and ASPO AD/PL Workshop Planners worked together on the agenda. The 12 sessions used a COE lens to focus on: Diversity, Equity, and Inclusion; Policy; State Cancer Coalitions; Evaluation and Metrics; Implementation Science; In-reach; Outreach; Training and Education; Funding, Personnel and Resources; Clinical Trials; Innovative Methods; and Lessons from the COVID-19 pandemic. This article is a summary of main points and key lessons from each session, as well as a summary of overarching themes that were evident across the sessions.


Assuntos
Relações Comunidade-Instituição , Neoplasias , Humanos , Estados Unidos , Pandemias , Neoplasias/epidemiologia , Neoplasias/prevenção & controle , Escolaridade
6.
Cancers (Basel) ; 15(11)2023 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-37296978

RESUMO

The LGBTQ+ community experiences cancer disparities due to increased risk factors and lower screening rates, attributable to health literacy gaps and systemic barriers. We sought to understand the experiences, perceptions, and knowledge base of healthcare providers regarding cancer screening for LGBTQ+ patients. A 20-item IRB-approved survey was distributed to physicians through professional organizations. The survey assessed experiences and education regarding the LGBTQ+ community and perceptions of patient concerns with different cancer screenings on a 5-point Likert scale. Complete responses were collected from 355 providers. Only 100 (28%) reported past LGBTQ+-related training and were more likely to be female (p = 0.020), have under ten years of practice (p = 0.014), or practice family/internal medicine (p < 0.001). Most (85%) recognized that LGBTQ+ subpopulations experience nuanced health issues, but only 46% confidently understood them, and 71% agreed their clinics would benefit from training. Family/internal medicine practitioners affirmed the clinical relevance of patients' sexual orientation (94%; 62% for medical/radiation oncology). Prior training affected belief in the importance of sexual orientation (p < 0.001), confidence in understanding LGBTQ+ health concerns (p < 0.001), and willingness to be listed as "LGBTQ+-friendly" (p = 0.005). Our study suggests that despite a paucity of formal training, most providers acknowledge that LGBTQ+ patients have unique health needs. Respondents had a lack of consensus regarding cancer screenings for lesbian and transgender patients, indicating the need for clearer screening standards for LGBTQ+ subpopulations and educational programs for providers.

7.
Cancer Causes Control ; 34(4): 307-319, 2023 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-36598655

RESUMO

PURPOSE: Despite the importance of engaging community members in research, multiple barriers exist. We conducted a mixed-methods evaluation to understand the opportunities and challenges of engaging community members in basic, clinical, translational, and population science research. METHODS: We designed a survey and an interview guide based on the constructs of the Consolidated Framework for Implementation Research. Surveys were distributed electronically to all cancer center investigators and interviews were conducted virtually with a select group of basic, clinical, and population science investigators. Survey data (n = 77) were analyzed across all respondents using frequency counts and mean scores; bivariate analyses examined differences in responses by research program affiliation, gender, race, and faculty rank. Interviews (n = 16) were audio recorded, transcribed verbatim, and analyzed using a reflective thematic approach. RESULTS: There was strong agreement among investigators that "Community engagement in research will help the SKCC address cancer disparities in the catchment area" (M 4.2, SD 0.9) and less agreement with items such as "I know how to find and connect with community members who I can engage in my research" (M 2.5, SD 1.3). Investigators mentioned challenges in communicating complex science to a lay audience but were open to training and workshops to acquire skills needed to integrate community members into their research. CONCLUSION: Cancer centers should develop and promote training and collaborative opportunities for investigators and community members. Overcoming challenges will lead to more patient- and community-centered cancer research in the future.


Assuntos
Neoplasias , Projetos de Pesquisa , Humanos , Neoplasias/terapia
8.
Otolaryngol Head Neck Surg ; 169(3): 520-527, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-36125900

RESUMO

OBJECTIVE: To determine the effects of head and neck squamous cell carcinoma diagnosis and treatment on patient- and partner-perceived intimacy and to understand if a diagnosis of HPV-related head and neck squamous cell carcinoma influences patient-partner intimacy. STUDY DESIGN: Prospective observational. SETTING: Single tertiary care center. METHODS: An investigator-developed questionnaire was used to prospectively survey patients and partners in 2 groups based on human papillomavirus (HPV) status: HPV+ and HPV- at diagnosis (visit 1) and after treatment (visit 2). Surveys were scored on a 60-point scale, and results were categorized as follows: loss of intimacy (0-30), stable relationship (31-41), or improvement in intimacy (42-60). Responses of couples who participated together were assessed for concordance. Responses were considered discordant if patient and partner scores equated to different levels of perceived intimacy. Median patient and partner scores were compared via Mann-Whitney U test, and concordance was assessed with a chi-square test. RESULTS: Thirty-four patients and 28 partners completed surveys at visit 1 and 28 patients and 15 partners at visit 2. Median scores among patients and partners were similar at the first time point (HPV+, 45 vs 45, P = .64; HPV-, 42.6 vs 40.8, P = .29) and the second (HPV+, 44.5 vs 44, P = .87; HPV-, 40.2 vs 39.6, P = .90). Concordance rates between HPV+ and HPV- couples were 63% vs 44% (P = .43) for the first time point and 89% vs 50% (P = .24) for the second. CONCLUSION: Patients and partners reported stable or improved intimacy at both time points, and most couples tended to agree on their levels of perceived intimacy. A diagnosis of HPV did not appear to significantly affect intimacy scores.


Assuntos
Neoplasias de Cabeça e Pescoço , Infecções por Papillomavirus , Humanos , Carcinoma de Células Escamosas de Cabeça e Pescoço , Infecções por Papillomavirus/complicações , Infecções por Papillomavirus/diagnóstico , Comportamento Sexual , Parceiros Sexuais , Neoplasias de Cabeça e Pescoço/diagnóstico , Neoplasias de Cabeça e Pescoço/terapia , Papillomavirus Humano
9.
Contemp Clin Trials ; 125: 107061, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36567059

RESUMO

BACKGROUND: Patient participation in clinical trials is influenced by demographic and other individual level characteristics. However, there is less research on the role of geography and neighborhood-level factors on clinical trial participation. This study identifies the demographic, clinical, geographic, and neighborhood predictors of consenting to a clinical trial among cancer patients at a large, urban, NCI-designated cancer center in the Mid-Atlantic region. METHODS: We used demographic and clinical data from patients diagnosed with cancer between 2015 and 2017. We geocoded patient addresses and calculated driving distance to the cancer center. Additionally, we linked patient data to neighborhood-level educational attainment, social capital and cancer prevalence. Finally, we used generalized linear mixed-effects conditional logistic regression to identify individual and neighborhood-level predictors of consenting to a clinical trial. RESULTS: Patients with higher odds of consenting to trials were: Non-Hispanic White, aged 50-69, diagnosed with breast, GI, head/neck, hematologic, or certain solid tumor cancers, those with cancers at regional stage, never/former tobacco users, and those with the highest neighborhood social capital index. Patients who lived further from the cancer center had higher odds of consenting to a trial. With every 1-km increase in residential distance, there was a 4% increase in the odds that patients would consent to a trial. Neither of the additional neighborhood-level variables predicted consenting to a clinical trial. CONCLUSIONS: This study identifies important demographic, patient-level, and geographic factors associated with consenting to cancer clinical trials, and lays the groundwork for future research exploring the role of neighborhood-level factors in clinical trial participation.


Assuntos
Neoplasias , Humanos , Modelos Logísticos , Modelos Lineares , Neoplasias/epidemiologia , Neoplasias/terapia , Características de Residência
10.
Telemed Rep ; 4(1): 387-395, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38169980

RESUMO

Introduction: We hosted a national consensus conference with a diverse group of stakeholders to develop a patient-centered research agenda focused on reducing disparities in telehealth use. Methods: Attendees were purposively invited to participate in a 2-day virtual conference. The group developed a prioritized research agenda focused on reducing disparities in telehealth uptake, with discussion informed by findings from a scoping review. All work was conducted in partnership with a Steering Committee of national experts in telehealth and patient-centered care (n = 5) and a community-based Telehealth Advisory Board with experience with telehealth use and barriers (n = 8). Results: Sixty individuals participated in the conference and discussion resulted in a final list of 20 questions. Fifty-two attendees voted on the final prioritization of these questions. Results were aggregated for all voters (n = 52) and patient-only voters (n = 8). The top question identified by both groups focused on patient and family perspectives on important barriers to telehealth use. The entire group voting identified telehealth's impact on patient outcomes as the next most important questions, while the patient-only group identified trust-related considerations and cultural factors impacting telehealth use as next priorities. Conclusions: This project involved extensive patient and stakeholder engagement. While voting varied between patients only and the entire group of conference attendees, top identified priorities included patient and family perspectives on important barriers to telehealth, trust and cultural barriers and facilitators to telehealth, and assessment of telehealth's impact on patient outcomes. This research agenda can inform design of future research focused on addressing disparities in telehealth use.

12.
Prev Med Rep ; 29: 101920, 2022 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-36161120

RESUMO

Rates of human papillomavirus (HPV) infection are highest in young adults, who can be vaccinated against HPV if they were not vaccinated as adolescents. Since young adults increasingly access health information on social media, we tested the impact of a social media campaign with narrative-based health information on intentions related to HPV vaccination. We also aimed to understand which ads resonated most with young adults and led to higher survey completion rates. We created social media posts featuring videos promoting HPV vaccination. We launched a sponsored ad campaign on Facebook to reach young women, ages 18-26, across the country. Participants were randomly assigned one of 6 videos and then completed a brief survey about video engagement and intentions to: talk with a health care professional, talk with friends or family, and vaccinate against HPV. A descriptive correlational design and a test for moderation were used to explore hypothesized relationships. Across all ads, 1332 link clicks led to 991 completed surveys that were reduced to 607 surveys (95 % ages 18-26, 63 % non-Caucasian; 58 % sexually active). Higher video engagement was associated with stronger intentions to talk with a health care professional (r = 0.44, p =.01), talk with friends/family (r = 0.52, p =.01), and vaccinate against HPV (r = 0.43, p =.01). Young adults were receptive to watching narrative-based health information videos on social media. When promoting HPV vaccination, more engaging information leads to greater intentions to talk about the vaccine and get vaccinated.

13.
J Community Genet ; 13(6): 547-556, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-35869324

RESUMO

Patients with prostate cancer (PCA) are increasingly being offered germline genetic testing for precision therapy, precision management, and clinical trial options. Genetic test results also have implications for family members. How men with PCA perceive their genetic test results and decide whether to share recommendations with family members is not well studied. We interviewed 12 patients who had PCA and genetic testing and received a positive variant/likely positive variant (PV/LPV) (n = 7) or a variant of unknown significance (VUS) (n = 5) result. The semi-structured interview had five sections: genetic testing experience, impact, and interpretation of the test result, deciding whether to communicate test results to family members, impact of communication on family members, and suggestions for genetic counselors and other PCA patients. Interviews were transcribed verbatim and thematic analysis was completed using NVivo software v10. Receipt of PV/LPV or VUS genetic test results was not as emotional as receiving the diagnosis of PCA itself. Seven of the 12 participants chose to share their test results with all relevant family members, 4 chose to share with select family members, and one chose to not disclose to any family members. The majority of family members who were aware of participants' genetic results have not undergone cascade genetic testing or sought cancer screening. Participants with PCA and positive or VUS genetic test results typically share their results with at least immediate family members, but some communication barriers exist. Understanding the best way to provide actionable and relevant information about genetic testing to family members remains a challenge.

14.
Cancer Epidemiol Biomarkers Prev ; 31(5): 1017-1025, 2022 05 04.
Artigo em Inglês | MEDLINE | ID: mdl-35247884

RESUMO

BACKGROUND: Food insecurity (FI) has been associated with poor access to health care. It is unclear whether this association is beyond that predicted by income, education, and health insurance. FI may serve as a target for intervention given the many programs designed to ameliorate FI. We examined the association of FI with being up-to-date to colorectal cancer and breast cancer screening guidelines. METHODS: Nine NCI-designated cancer centers surveyed adults in their catchment areas using demographic items and a two-item FI questionnaire. For the colorectal cancer screening sample (n = 4,816), adults ages 50-75 years who reported having a stool test in the past year or a colonoscopy in the past 10 years were considered up-to-date. For the breast cancer screening sample (n = 2,449), female participants ages 50-74 years who reported having a mammogram in the past 2 years were up-to-date. We used logistic regression to examine the association between colorectal cancer or breast cancer screening status and FI, adjusting for race/ethnicity, income, education, health insurance, and other sociodemographic covariates. RESULTS: The prevalence of FI was 18.2% and 21.6% among colorectal cancer and breast cancer screening participants, respectively. For screenings, 25.6% of colorectal cancer and 34.1% of breast cancer participants were not up-to-date. In two separate adjusted models, FI was significantly associated with lower odds of being up-to-date with colorectal cancer screening [OR, 0.7; 95% confidence interval (CI), 0.5-0.99)] and breast cancer screening (OR, 0.6; 95% CI, 0.4-0.96). CONCLUSIONS: FI was inversely associated with being up-to-date for colorectal cancer and breast cancer screening. IMPACT: Future studies should combine FI and cancer screening interventions to improve screening rates.


Assuntos
Neoplasias da Mama , Neoplasias Colorretais , Adulto , Idoso , Mama , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/epidemiologia , Neoplasias Colorretais/diagnóstico , Neoplasias Colorretais/epidemiologia , Detecção Precoce de Câncer , Feminino , Insegurança Alimentar , Humanos , Programas de Rastreamento , Pessoa de Meia-Idade
15.
Cancer Epidemiol Biomarkers Prev ; 31(5): 955-964, 2022 05 04.
Artigo em Inglês | MEDLINE | ID: mdl-35064067

RESUMO

BACKGROUND: Cancer centers are expected to engage communities and reduce the burden of cancer in their catchment areas. However, the extent to which cancer centers adequately reach the entire US population is unknown. METHODS: We surveyed all members of the Association of American Cancer Institutes (N = 102 cancer centers) to document and map each cancer center's primary catchment area. Catchment area descriptions were aggregated to the county level. Catchment area coverage scores were calculated for each county and choropleths generated representing coverage across the US. Similar analyses were used to overlay US population density, cancer incidence, and cancer-related mortality compared with each county's cancer center catchment area coverage. RESULTS: Roughly 85% of US counties were included in at least one cancer center's primary catchment area. However, 15% of US counties, or roughly 25 million Americans, do not reside in a catchment area. When catchment area coverage was integrated with population density, cancer incidence, and cancer-related mortality metrics, geographical trends in both over- and undercoverage were apparent. CONCLUSIONS: Geographic gaps in cancer center catchment area coverage exist and may be propagating cancer disparities. Efforts to ensure coverage to all Americans should be a priority of cancer center leadership. IMPACT: This is the first known geographic analysis and interpretation of the primary catchment areas of all US-based cancer centers and identifies key geographic gaps important to target for disparities reduction. See related commentary by Lieberman-Cribbin and Taioli, p. 949.


Assuntos
Neoplasias , Saúde Pública , Área Programática de Saúde , Humanos , Neoplasias/epidemiologia , Neoplasias/prevenção & controle , Projetos de Pesquisa , Inquéritos e Questionários , Estados Unidos/epidemiologia
16.
Artigo em Inglês | MEDLINE | ID: mdl-34778693

RESUMO

Racial and ethnic disparities in genetic awareness (GA) can diminish the impact of personalized cancer treatment and risk assessment. We assessed factors predictive of GA in a diverse population-based sample to inform awareness strategies and reduce disparities in genetic testing. METHODS: A cross-sectional study was conducted from July 2019 to August 2019, with the survey e-mailed to 7,575 adult residents in southeastern Pennsylvania and New Jersey. Constructs from National Cancer Institute Health Information and National Trends Survey assessed cancer attitudes or beliefs, health literacy, and numeracy. Characteristics were summarized with mean ± standard deviation for numeric variables and frequency counts and percentages for categorical variables. Comparison of factors by race or ethnicity (non-Hispanic White and non-Hispanic Black) and sex was conducted by t-tests, chi-square, or Fisher's exact tests. Multivariate logistic regression models were conducted to identify factors independently predictive of GA. RESULTS: Of 1,557 respondents, data from 940 respondents (the mean age was 45 ± 16.2 years, 35.5% males, and 23% non-Hispanic Blacks) were analyzed. Factors associated with higher GA included female gender (P < .001), non-Hispanic White (P < .001), college education (P < .001), middle-higher income (P < .001), stronger belief in genetic basis of cancer (P < .001), lower cancer fatalism (P = .004), motivation for cancer information (P < .001), and higher numeracy (P = .002). On multivariate analysis, college education (odds ratio [OR] 1.79; 95% CI, 1.22 to 2.63), higher motivation for cancer information (OR 1.56; 95% CI, 1.17 to 2.09), stronger belief in genetics of cancer (OR 2.21; 95% CI, 1.48 to 3.30), and higher medical literacy (OR 2.21; 95% CI, 1.34 to 3.65) predicted greater GA. CONCLUSION: This population-based study conducted in the precision medicine era identified novel modifiable factors, importantly perceptions of cancer genetics and medical literacy, as predictive of GA, which informs strategies to promote equitable engagement in genetically based cancer care.


Assuntos
Testes Genéticos/métodos , Conhecimentos, Atitudes e Prática em Saúde , Letramento em Saúde/métodos , Disparidades nos Níveis de Saúde , Adulto , Estudos Transversais , Detecção Precoce de Câncer/psicologia , Detecção Precoce de Câncer/estatística & dados numéricos , Feminino , Testes Genéticos/estatística & dados numéricos , Letramento em Saúde/estatística & dados numéricos , Humanos , Renda/estatística & dados numéricos , Pessoa de Meia-Idade , New Jersey/etnologia , Pennsylvania/etnologia , Medicina de Precisão/tendências , Inquéritos e Questionários
17.
Front Digit Health ; 3: 682639, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34713151

RESUMO

Introduction: Personas are based on real-life typologies of people that can be used to create characters and messages to communicate important health information through relatable narrative storylines. Persona development is data-driven and can involve multiple phases of formative research and evaluation; however, personas are largely underutilized in digital health research. The purpose of this study was to create and document persona development to deliver narrative-focused health education for parents on Twitter with the goal of increasing uptake of HPV vaccination among adolescents. Methods: Leveraging data from a mixed-method study conducted in the U.S. with a diverse population of parents with adolescents ages 9-14, we used both qualitative and quantitative data (e.g., the National Immunization Survey-Teen, focus groups, and social media) to create personas. These data sources were used to identify and develop key characteristics for personas to reflect a range of parents and their diverse understandings and experiences related to HPV vaccination. A parent advisory board provided insight and helped refine persona development. Results: Four personas emerged and were characterized as the (1) Informed Altruist, (2) Real Talker, (3) Information Gatherer, and (4) Supporter. Characteristics differed across personas and provided insights into targeted narrative strategies. Described attributes included demographics, psychographics, communication style, vaccine goals and aspirations, vaccine challenges and frustrations, and vaccine hesitancy. Discussion: This work demonstrates how multiple data sources can be used to create personas to deliver social media messages that can address the diverse preferences and needs of parents for HPV vaccine information. With increasing usage of social media for health information among parents, it is important for researchers to consider marketing and design thinking to create health communication messages that resonate with audiences.

18.
JMIR Cancer ; 7(3): e27063, 2021 Sep 20.
Artigo em Inglês | MEDLINE | ID: mdl-34542414

RESUMO

BACKGROUND: Genetic testing, particularly for BRCA1/2, is increasingly important in prostate cancer (PCa) care, with impact on PCa management and hereditary cancer risk. However, the extent of public awareness and online discourse on social media is unknown, and presents opportunities to identify gaps and enhance population awareness and uptake of advances in PCa precision medicine. OBJECTIVE: The objective of this study was to characterize activity and engagement across multiple social media platforms (Twitter, Facebook, and YouTube) regarding BRCA and genetic testing for PCa compared with breast cancer, which has a long history of public awareness, advocacy, and prominent social media presence. METHODS: The Symplur Signals online analytics platform was used to obtain metrics for tweets about (1) #BRCA and #breastcancer, (2) #BRCA and #prostatecancer, (3) #genetictesting and #breastcancer, and (4) #genetictesting and #prostatecancer from 2016 to 2020. We examined the total number of tweets, users, and reach for each hashtag, and performed content analysis for a subset of tweets. Facebook and YouTube were queried using analogous search terms, and engagement metrics were calculated. RESULTS: During a 5-year period, there were 10,005 tweets for #BRCA and #breastcancer, versus 1008 tweets about #BRCA and #prostatecancer. There were also more tweets about #genetictesting and #breastcancer (n=1748), compared with #genetic testing and #prostatecancer (n=328). Tweets about genetic testing (12,921,954) and BRCA (75,724,795) in breast cancer also had substantially greater reach than those about PCa (1,463,777 and 4,849,905, respectively). Facebook groups and pages regarding PCa and BRCA/genetic testing had fewer average members, new members, and new posts, as well as fewer likes and followers, compared with breast cancer. Facebook videos had more engagement than YouTube videos across both PCa and breast cancer content. CONCLUSIONS: There is substantially less social media engagement about BRCA and genetic testing in PCa compared with breast cancer. This landscape analysis provides insights into strategies for leveraging social media platforms to increase public awareness about PCa germline testing, including use of Facebook to share video content and Twitter for discussions with health professionals.

19.
Cancer Discov ; 11(9): 2135-2138, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-34479970

RESUMO

Currently, patients and community members have more frequent interaction with clinical and population scientists than basic scientists, leading to gaps in their engagement across the cancer research continuum. Engaging patients and community members in all types of cancer research can bring personal experiences and societal factors to the forefront, informing scientists about these concerns and leading to research that is more responsive to patient and community needs. Engaging patients with cancer and community members as partners in research helps ensure that the scientific evidence generated is useful to patients and-more importantly-trusted by patients. This bidirectional engagement between patients/community members and research investigators fosters a collaborative and ethical foundation for scientific discovery. Although community-engaged research has been in existence for decades, more recent attention by national organizations to embed patients with cancer and community members into the research process has accelerated the importance of these efforts. Here, we describe the importance of patient and community engagement (PCE) in cancer research. We outline key principles in undertaking PCE in cancer research, provide a framework for PCE throughout the cancer research continuum, review metrics for evaluating the effectiveness of PCE in cancer research, and share opportunities for PCE in cancer research going forward.


Assuntos
Pesquisa Biomédica , Neoplasias , Participação do Paciente , Participação da Comunidade , Humanos , Estados Unidos
20.
JCO Clin Cancer Inform ; 5: 872-880, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-34428075

RESUMO

PURPOSE: eHealth literacy, or the ability to seek, find, understand, and appraise health information from electronic sources, has become increasingly relevant in the era of COVID-19, when so many aspects of patient care became dependent on technology. We aimed to understand eHealth literacy among a diverse sample of patients with cancer and discuss ways for health systems and cancer centers to ensure that all patients have access to high-quality care. METHODS: A cross-sectional survey of patients with cancer and caregivers was conducted at an NCI-designated cancer center to assess access to the Internet, smartphone ownership, use of mobile apps, willingness to engage remotely with the health care team, and use of the patient portal. Descriptive statistics and bivariate analyses were used to assess frequencies and significant differences between variables. RESULTS: Of 363 participants, 55% (n = 201) were female, 71% (n = 241) identified as non-Hispanic White, and 29% (n = 85) reported that their highest level of education was a high school diploma. Most (90%, n = 323) reported having access to the Internet and most (82%, n = 283) reported owning a smartphone. Younger patients or those with a college degree were significantly more likely to own a smartphone, access health information online, know how to download an app on their own, have an interest in communicating with their health care team remotely, or have an account on the electronic patient portal. CONCLUSION: As cancer centers increasingly engage patients through electronic and mobile applications, patients with low or limited digital literacy may be excluded, exacerbating current cancer health disparities. Patient-, provider- and system-level technology barriers must be understood and mitigated.


Assuntos
COVID-19 , Aplicativos Móveis , Neoplasias , Estudos Transversais , Feminino , Humanos , Neoplasias/epidemiologia , Neoplasias/terapia , SARS-CoV-2 , Tecnologia
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