Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 49
Filtrar
1.
Artículo en Inglés | MEDLINE | ID: mdl-39340617

RESUMEN

INTRODUCTION: In response to high levels of cancer disparities in Philadelphia, PA, three NCI-designated clinical cancer centers formed Philadelphia Communities Conquering Cancer (PC3) to bring stakeholders together and establish infrastructure for future cancer reducing initiatives. The PC3 coalition aimed to develop a prioritized cancer disparities research agenda in order to align cancer center resources and research interests with the concerns of the community about cancer, and to ensure that initiatives were patient- and community-centered. METHODS: Agenda development activities culminated in a city-wide cancer disparities conference. The conference, attended by 55 diverse stakeholders, was the venue for small group discussion sessions about cancer concerns related to prevention, early detection, treatment, survivorship, and quality of life. Sessions were guided by a moderator guide and were audiorecorded, transcribed, and analyzed by the PC3 leadership team. Results were reviewed and consensus was achieved with the help of PC3's Stakeholder Advisory Committee. RESULTS: Stakeholders identified four thematic areas as top priorities for cancer disparities research and action in Philadelphia: communication between patients, providers, and caregivers; education that reaches patients and community members with tailored and targeted information; navigation that assists people in finding and accessing the right cancer screening or treatment option for them; and representation that diversifies the workforce in clinics, cancer centers, and research offices. CONCLUSION: A community-informed, prioritized research agenda provides a road map for the three cancer centers to collaborate on future initiatives that are important to patients and stakeholders, to ultimately reduce the burden of cancer for all Philadelphians.

2.
JMIR Cancer ; 10: e56048, 2024 Sep 30.
Artículo en Inglés | MEDLINE | ID: mdl-39348891

RESUMEN

BACKGROUND: Black/African American adults are underrepresented in oncology clinical trials in the United States, despite efforts at narrowing this disparity. OBJECTIVE: This study aims to explore differences in how Black/African American oncology patients perceive clinical trials to improve support for the clinical trial participation decision-making process. METHODS: As part of a larger randomized controlled trial, a total of 244 adult oncology patients receiving active treatment or follow-up care completed a cross-sectional baseline survey on sociodemographic characteristics, clinical trial knowledge, health literacy, perceptions of cancer clinical trials, patient activation, patient advocacy, health care self-efficacy, decisional conflict, and clinical trial intentions. Self-reported race was dichotomized into Black/African American and non-Black/African American. As appropriate, 2-tailed t tests and chi-square tests of independence were used to examine differences between groups. RESULTS: Black/African American participants had lower clinical trial knowledge (P=.006), lower health literacy (P<.001), and more medical mistrust (all P values <.05) than non-Black/African American participants. While intentions to participate in a clinical trial, if offered, did not vary between Black/African American and non-Black/African American participants, Black/African American participants indicated lower awareness of clinical trials, fewer benefits of clinical trials, and more uncertainty around clinical trial decision-making (all P values <.05). There were no differences for other variables. CONCLUSIONS: Despite no significant differences in intent to participate in a clinical trial if offered and high overall trust in individual health care providers among both groups, beliefs persist about barriers to and benefits of clinical trial participation among Black/African American patients. Findings highlight specific ways that education and resources about clinical trials could be tailored to better suit the informational and decision-making needs and preferences of Black/African American oncology patients.


Asunto(s)
Negro o Afroamericano , Neoplasias , Humanos , Estudios Transversales , Masculino , Femenino , Persona de Mediana Edad , Neoplasias/terapia , Neoplasias/etnología , Negro o Afroamericano/psicología , Adulto , Conocimientos, Actitudes y Práctica en Salud/etnología , Ensayos Clínicos como Asunto , Disparidades en Atención de Salud/etnología , Anciano , Alfabetización en Salud , Estados Unidos , Toma de Decisiones , Participación del Paciente/psicología
3.
BMC Public Health ; 24(1): 2533, 2024 Sep 18.
Artículo en Inglés | MEDLINE | ID: mdl-39289635

RESUMEN

BACKGROUND: Black men consistently have higher rates of prostate cancer (PCA)- related mortality. Advances in PCA treatment, screening, and hereditary cancer assessment center around germline testing (GT). Of concern is the significant under-engagement of Black males in PCA GT, limiting the benefit of precision therapy and tailored cancer screening despite longstanding awareness of these disparities. To address these critical disparities, the Socioecological Model (SEM) was employed to develop comprehensive recommendations to overcome barriers and implement equitable strategies to engage Black males in PCA GT. METHODS: Clinical/research experts, national organization leaders, and community stakeholders spanning multiple regions in US and Africa participated in developing a framework for equity in PCA GT grounded in the SEM. A novel mixed-methods approach was employed to generate key areas to be addressed and informed statements for consensus consideration utilizing the modified Delphi model. Statements achieving strong consensus (> =75% agreement) were included in final equity frameworks addressing clinical/community engagement and research engagement. RESULTS: All societal levels of the SEM (interpersonal, institutional, community, and policy/advocacy) must deliver information about PCA GT to Black males that address benefits/limitations, clinical impact, hereditary cancer implications, with acknowledgment of mistrust (mean scores [MS] 4.57-5.00). Interpersonal strategies for information delivery included engagement of family/friends/peers/Black role models to improve education/awareness and overcome mistrust (MS 4.65-5.00). Institutional strategies included diversifying clinical, research, and educational programs and integrating community liaisons into healthcare institutions (MS 4.57-5.00). Community strategies included partnerships with healthcare institutions and visibility of healthcare providers/researchers at community events (MS 4.65-4.91). Policy/advocacy included improving partnerships between advocacy and healthcare/community organizations while protecting patient benefits (MS 4.57-5.00). Media strategies were endorsed for the first time at every level (MS 4.56-5.00). CONCLUSION: The SEM-based equity frameworks proposed provide the first multidisciplinary strategies dedicated to increase engagement of Black males in PCA GT, which are critical to reduce disparities in PCA-mortality through informing tailored screening, targeted therapy, and cascade testing in families.


Asunto(s)
Población Negra , Pruebas Genéticas , Disparidades en Atención de Salud , Neoplasias de la Próstata , Humanos , Masculino , África/etnología , Negro o Afroamericano , Técnica Delphi , Neoplasias de la Próstata/diagnóstico , Neoplasias de la Próstata/genética , Estados Unidos
4.
J Natl Cancer Inst ; 2024 Sep 23.
Artículo en Inglés | MEDLINE | ID: mdl-39312690

RESUMEN

The National Cancer Institute's (NCI) Cancer Center Support Grant mandates that NCI-Designated Cancer Centers establish a Community Outreach and Engagement (COE) component to help direct efforts at reducing cancer burden within their catchment areas. Despite the critical role of COE offices, little is known about how they track and evaluate outreach activities and outcomes. We gathered information on current practices from representatives of 40 out of 65 COE offices using an online survey. While nearly all responding centers (97.5%) tracked COE activities, no consensus existed on resources used and satisfaction with current solutions was mixed (51.0% not satisfied). Respondents expressed need for a centralized, standardized, and comprehensive tracking solution to capture outreach events and external partnerships, automate report generation, and ensure alignment with COE aims. This study highlights challenges COE offices face with resource limitations and a heterogeneity of activities to track, and the need for a standard evaluation framework.

5.
JAMA Netw Open ; 7(9): e2432718, 2024 Sep 03.
Artículo en Inglés | MEDLINE | ID: mdl-39254972

RESUMEN

Importance: While telehealth use has grown, patient uptake is variable, which has the potential to increase health disparities. Identifying and understanding individuals' barriers to digital health readiness can help health systems efficiently deploy resources to provide personalized patient-centered support. Objective: To develop and validate an instrument to evaluate digital health readiness to identify and quantify barriers to digital readiness. Design, Setting, and Participants: In this qualitative mixed-methods study conducted from April 26, 2022, to June 8, 2023, the instrument was created in 4 phases. Patients and health care professionals were interviewed to explore barriers to telehealth use, scale items were developed for the screener, cognitive interviews were conducted to refine scale items, and psychometric properties of the screener were evaluated. The study was conducted in an urban, multisite academic health system and the surrounding community. Participants were older than 18 years, English-speaking, and able to provide informed consent. Professionals worked within the Jefferson Health system and were involved in telehealth services. Exposure: Participants completed a semistructured interview (duration: 6-19 minutes), a cognitive interview (duration: 13-137 minutes), or the draft screener survey (duration: 5-10 minutes). Main Outcomes and Measures: Development and validation of a screener for digital health readiness. Results: Of 519 patients approached, 19 were ineligible, 122 declined, and 11 were excluded from analysis, resulting in inclusion of 367 participants (32 patient interviews, 16 professional interviews, 15 cognitive interviews, 304 psychometric survey testing). All 16 professionals who were approached participated. Most patient participants were Black (46.7%) or White (37.9%), male (56.4%), and had a high school degree or some college (49.6%); mean (SD) age was 45 (23) years for participants in cognitive interviews, 53 (18) years for survey respondents, and 57 (14) years for patient interviews. The structured interviews uncovered 21 concepts, leading to 48 items that were refined through cognitive interviews. Psychometric analyses of the 29 items that emerged from the cognitive interviews resulted in a final screener with 24 items across 2 factors: technical readiness (18 items; factor loading range, 0.488-0.968) and quality-of-care concerns (6 items; factor loading range, 0.619-0.942). Conclusions and Relevance: In this qualitative study of digital health readiness, the findings suggest that the screener items may be valid to assess the complexity of factors influencing digital health uptake and highlight several areas for potential intervention.


Asunto(s)
Psicometría , Telemedicina , Humanos , Masculino , Telemedicina/estadística & datos numéricos , Femenino , Persona de Mediana Edad , Adulto , Psicometría/métodos , Investigación Cualitativa , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Anciano , Salud Digital
6.
J Natl Cancer Inst Monogr ; 2024(66): 267-274, 2024 Aug 15.
Artículo en Inglés | MEDLINE | ID: mdl-39108237

RESUMEN

Prescription opioids are used for managing pain in persons with cancer, however, there are socioeconomic and racial disparities in medication access. Cannabis is increasingly used for cancer symptom management and as an opioid alternative. Limited data are available about patterns of opioid and cannabis use among patients with cancer. We used survey data from 4 National Cancer Institute-designated cancer centers in 3 states (n = 1220) to assess perceptions, use of cannabis and opioids for pain, their substitution, and racial and ethnic differences in each outcome. Compared with White patients, Black patients were less likely to use opioids for pain (odds ratio [OR] = 0.66; P = .035) and more likely to report that cannabis was more effective than opioids (OR = 2.46; P = .03). Race effects were mitigated (P > .05) after controlling for socioeconomic factors. Further research is needed to understand cannabis and opioid use patterns and how overlapping social determinants of health create a disadvantage in cancer symptom management for Black patients.


Asunto(s)
Analgésicos Opioides , Dolor en Cáncer , Marihuana Medicinal , Neoplasias , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Analgésicos Opioides/uso terapéutico , Negro o Afroamericano , Instituciones Oncológicas/estadística & datos numéricos , Dolor en Cáncer/tratamiento farmacológico , Dolor en Cáncer/etiología , Marihuana Medicinal/uso terapéutico , National Cancer Institute (U.S.) , Neoplasias/complicaciones , Neoplasias/terapia , Neoplasias/epidemiología , Manejo del Dolor/métodos , Percepción , Factores Socioeconómicos , Estados Unidos/epidemiología , Blanco
7.
JAMA Otolaryngol Head Neck Surg ; 150(8): 713-724, 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-38900443

RESUMEN

Importance: Patient education materials (PEMs) can promote patient engagement, satisfaction, and treatment adherence. The American Medical Association recommends that PEMs be developed for a sixth-grade or lower reading level. Health literacy (HL) refers to an individual's ability to seek, understand, and use health information to make appropriate decisions regarding their health. Patients with suboptimal HL may not be able to understand or act on health information and are at risk for adverse health outcomes. Objective: To assess the readability of PEMs on head and neck cancer (HNC) and to evaluate HL among patients with HNC. Evidence Review: A systematic review of the literature was performed by searching Cochrane, PubMed, and Scopus for peer-reviewed studies published from 1995 to 2024 using the keywords head and neck cancer, readability, health literacy, and related synonyms. Full-text studies in English that evaluated readability and/or HL measures were included. Readability assessments included the Flesch-Kincaid Grade Level (FKGL grade, 0-20, with higher grades indicating greater reading difficulty) and Flesch Reading Ease (FRE score, 1-100, with higher scores indicating easier readability), among others. Reviews, conference materials, opinion letters, and guidelines were excluded. Study quality was assessed using the Appraisal Tool for Cross-Sectional Studies. Findings: Of the 3235 studies identified, 17 studies assessing the readability of 1124 HNC PEMs produced by professional societies, hospitals, and others were included. The mean FKGL grade ranged from 8.8 to 14.8; none of the studies reported a mean FKGL of grade 6 or lower. Eight studies assessed HL and found inadequate HL prevalence ranging from 11.9% to 47.0%. Conclusions and Relevance: These findings indicate that more than one-third of patients with HNC demonstrate inadequate HL, yet none of the PEMs assessed were developed for a sixth grade or lower reading level, as recommended by the American Medical Association. This incongruence highlights the need to address the readability of HNC PEMs to improve patient understanding of the disease and to mitigate potential barriers to shared decision-making for patients with HNC. It is crucial to acknowledge the responsibility of health care professionals to produce and promote more effective PEMs to dismantle the potentially preventable literacy barriers.


Asunto(s)
Comprensión , Neoplasias de Cabeza y Cuello , Alfabetización en Salud , Educación del Paciente como Asunto , Humanos , Neoplasias de Cabeza y Cuello/terapia
8.
Cancer Discov ; 14(4): 569-572, 2024 Apr 04.
Artículo en Inglés | MEDLINE | ID: mdl-38571420

RESUMEN

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.


Asunto(s)
Neoplasias , Humanos , Neoplasias/terapia , Neoplasias/tratamiento farmacológico , Emparejamiento Base , Medicina de Precisión , Oncología Médica , Genómica
9.
JCO Precis Oncol ; 8: e2300552, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38452310

RESUMEN

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.


Asunto(s)
Asesoramiento Genético , Neoplasias de la Próstata , Humanos , Masculino , Asesoramiento Genético/métodos , Pruebas Genéticas , Células Germinativas , Conocimientos, Actitudes y Práctica en Salud , Neoplasias de la Próstata/diagnóstico , Neoplasias de la Próstata/genética , Neoplasias de la Próstata/terapia
10.
Vaccine ; 42(7): 1704-1713, 2024 Mar 07.
Artículo en Inglés | MEDLINE | ID: mdl-38355317

RESUMEN

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.


Asunto(s)
COVID-19 , Infecciones por Papillomavirus , Vacunas contra Papillomavirus , Niño , Humanos , Adolescente , Motivación , Infecciones por Papillomavirus/prevención & control , Pandemias/prevención & control , COVID-19/prevención & control , Padres , Conocimientos, Actitudes y Práctica en Salud , Intención , Vacunación , Vacunas contra Papillomavirus/uso terapéutico
11.
Cancer ; 130(4): 497-504, 2024 02 15.
Artículo en Inglés | MEDLINE | ID: mdl-37941524

RESUMEN

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.


Asunto(s)
Dolor en Cáncer , Cannabis , Dolor Crónico , Marihuana Medicinal , Neoplasias , Humanos , Dolor en Cáncer/tratamiento farmacológico , Marihuana Medicinal/uso terapéutico , Dolor/tratamiento farmacológico , Dolor/inducido químicamente , Analgésicos Opioides/uso terapéutico , Neoplasias/complicaciones , Neoplasias/epidemiología , Neoplasias/terapia
12.
Cancer Epidemiol Biomarkers Prev ; 32(12): 1777-1782, 2023 12 01.
Artículo en Inglés | MEDLINE | ID: mdl-37791915

RESUMEN

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.


Asunto(s)
Relaciones Comunidad-Institución , Neoplasias , Humanos , Estados Unidos , Pandemias , Neoplasias/epidemiología , Neoplasias/prevención & control , Escolaridad
13.
Cancers (Basel) ; 15(11)2023 Jun 01.
Artículo en Inglés | MEDLINE | ID: mdl-37296978

RESUMEN

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.

14.
Cancer Causes Control ; 34(4): 307-319, 2023 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-36598655

RESUMEN

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.


Asunto(s)
Neoplasias , Proyectos de Investigación , Humanos , Neoplasias/terapia
15.
Otolaryngol Head Neck Surg ; 169(3): 520-527, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-36125900

RESUMEN

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.


Asunto(s)
Neoplasias de Cabeza y Cuello , Infecciones por Papillomavirus , Humanos , Carcinoma de Células Escamosas de Cabeza y Cuello , Infecciones por Papillomavirus/complicaciones , Infecciones por Papillomavirus/diagnóstico , Conducta Sexual , Parejas Sexuales , Neoplasias de Cabeza y Cuello/diagnóstico , Neoplasias de Cabeza y Cuello/terapia , Virus del Papiloma Humano
16.
Contemp Clin Trials ; 125: 107061, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-36567059

RESUMEN

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.


Asunto(s)
Neoplasias , Humanos , Modelos Logísticos , Modelos Lineales , Neoplasias/epidemiología , Neoplasias/terapia , Características de la Residencia
17.
Telemed Rep ; 4(1): 387-395, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-38169980

RESUMEN

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.

19.
Prev Med Rep ; 29: 101920, 2022 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-36161120

RESUMEN

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.

20.
J Community Genet ; 13(6): 547-556, 2022 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-35869324

RESUMEN

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.

SELECCIÓN DE REFERENCIAS
DETALLE DE LA BÚSQUEDA