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1.
Cancer ; 130(4): 497-504, 2024 02 15.
Article in English | MEDLINE | ID: mdl-37941524

ABSTRACT

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.


Subject(s)
Cancer Pain , Cannabis , Chronic Pain , Medical Marijuana , Neoplasms , Humans , Cancer Pain/drug therapy , Medical Marijuana/therapeutic use , Pain/drug therapy , Pain/chemically induced , Analgesics, Opioid/therapeutic use , Neoplasms/complications , Neoplasms/epidemiology , Neoplasms/therapy
2.
Article in English | MEDLINE | ID: mdl-39340617

ABSTRACT

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.

3.
BMC Public Health ; 24(1): 2533, 2024 Sep 18.
Article in English | MEDLINE | ID: mdl-39289635

ABSTRACT

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.


Subject(s)
Black People , Genetic Testing , Healthcare Disparities , Prostatic Neoplasms , Humans , Male , Africa/ethnology , Black or African American , Delphi Technique , Prostatic Neoplasms/diagnosis , Prostatic Neoplasms/genetics , United States
4.
Cancer Causes Control ; 34(4): 307-319, 2023 Apr.
Article in English | MEDLINE | ID: mdl-36598655

ABSTRACT

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.


Subject(s)
Neoplasms , Research Design , Humans , Neoplasms/therapy
5.
Prostate ; 81(11): 754-764, 2021 08.
Article in English | MEDLINE | ID: mdl-34057231

ABSTRACT

BACKGROUND: Genetic counseling and germline testing have an increasingly important role for patients with prostate cancer (PCa); however, recent data suggests they are underutilized. Our objective was to perform a qualitative study of the barriers and facilitators of germline genetic evaluation among physicians who manage PCa. METHODS: We conducted semi-structured interviews with medical oncologists, radiation oncologists, and urologists from different U.S. practice settings until thematic saturation was achieved at n = 14. The interview guide was based on the Tailored Implementation in Chronic Diseases Framework to identify key determinants of practice. Interview transcripts were independently coded by ≥2 investigators using a constant comparative method. RESULTS: The decision to perform or refer for germline genetic evaluation is affected by factors at multiple levels. Although patient factors sometimes play a role, the dominant themes in the decision to conduct germline genetic evaluation were at the physician and organizational level. Physician knowledge, coordination of care, perceptions of the guidelines, and concerns about cost were most frequently discussed as the main factors affecting utilization of germline genetic evaluation. CONCLUSIONS: There are currently numerous barriers to implementation of germline genetic evaluation for PCa. Efforts to expand physician education, to develop tools to enhance genetics in practice, and to facilitate coordination of care surrounding genetic evaluation are important to promote guideline-concordant care.


Subject(s)
Genetic Counseling/statistics & numerical data , Genetic Testing/statistics & numerical data , Germ-Line Mutation/genetics , Prostatic Neoplasms/genetics , Adult , Attitude of Health Personnel , Humans , Male , Middle Aged , Oncologists , Physician's Role , Practice Guidelines as Topic , Qualitative Research , Radiation Oncologists , Urologists
6.
J Med Internet Res ; 22(12): e21451, 2020 12 03.
Article in English | MEDLINE | ID: mdl-33270038

ABSTRACT

BACKGROUND: The human papillomavirus (HPV) vaccine is a major advancement in cancer prevention and this primary prevention tool has the potential to reduce and eliminate HPV-associated cancers; however, the safety and efficacy of vaccines in general and the HPV vaccine specifically have come under attack, particularly through the spread of misinformation on social media. The popular social media platform Instagram represents a significant source of exposure to health (mis)information; 1 in 3 US adults use Instagram. OBJECTIVE: The objective of this analysis was to characterize pro- and anti-HPV vaccine networks on Instagram, and to describe misinformation within the anti-HPV vaccine network. METHODS: From April 2018 to December 2018, we collected publicly available English-language Instagram posts containing hashtags #HPV, #HPVVaccine, or #Gardasil using Netlytic software (n=16,607). We randomly selected 10% of the sample and content analyzed relevant posts (n=580) for text, image, and social media features as well as holistic attributes (eg, sentiments, personal stories). Among antivaccine posts, we organized elements of misinformation within four broad dimensions: 1) misinformation theoretical domains, 2) vaccine debate topics, 3) evidence base, and 4) health beliefs. We conducted univariate, bivariate, and network analyses on the subsample of posts to quantify the role and position of individual posts in the network. RESULTS: Compared to provaccine posts (324/580, 55.9%), antivaccine posts (256/580, 44.1%) were more likely to originate from individuals (64.1% antivaccine vs 25.0% provaccine; P<.001) and include personal narratives (37.1% vs 25.6%; P=.003). In the antivaccine network, core misinformation characteristics included mentioning #Gardasil, purporting to reveal a lie (ie, concealment), conspiracy theories, unsubstantiated claims, and risk of vaccine injury. Information/resource posts clustered around misinformation domains including falsification, nanopublications, and vaccine-preventable disease, whereas personal narrative posts clustered around different domains of misinformation, including concealment, injury, and conspiracy theories. The most liked post (6634 likes) in our full subsample was a positive personal narrative post, created by a non-health individual; the most liked post (5604 likes) in our antivaccine subsample was an informational post created by a health individual. CONCLUSIONS: Identifying characteristics of misinformation related to HPV vaccine on social media will inform targeted interventions (eg, network opinion leaders) and help sow corrective information and stories tailored to different falsehoods.


Subject(s)
Papillomavirus Vaccines/standards , Social Media/standards , Social Network Analysis , Humans
7.
Prev Med ; 112: 47-53, 2018 07.
Article in English | MEDLINE | ID: mdl-29625131

ABSTRACT

This study presents a novel geo-based metric to identify neighborhoods with high burdens of prostate cancer, and compares this metric to other methods to prioritize neighborhoods for prostate cancer interventions. We geocoded prostate cancer patient data (nĆ¢Ā€ĀÆ=Ć¢Ā€ĀÆ10,750) from the Pennsylvania cancer registry from 2005 to 2014 by Philadelphia census tract (CT) to create standardized incidence ratios (SIRs), mortality ratios (SMRs), and mean prostate cancer aggressiveness. We created a prostate cancer composite (PCa composite) variable to describe CTs by mean-centering and standard deviation-scaling the SMR, SIR, and mean aggressiveness variables and summing them. We mapped CTs with the 25 highest PCa composite scores and compared these neighborhoods to CTs with the 25 highest percent African American residents and the 25 lowest median household incomes. The mean PCa composite score among the 25 highest CTs was 4.65. Only seven CTs in Philadelphia had both one of the highest PCa composite scores and the highest percent African American residents. Only five CTs had both the highest PCa composites and the lowest median incomes. Mean PCa composite scores among CTs with the highest percent African American residents and lowest median incomes were 2.08 and 1.19, respectively. The PCa composite score is an accurate metric for prioritizing neighborhoods based on burden. If neighborhoods were prioritized based on percent African American or median income, priority neighborhoods would have been very different and not based on PCa burden. These methods can be utilized by public health decision-makers when tasked to prioritize and select neighborhoods for cancer interventions.


Subject(s)
Prostatic Neoplasms/epidemiology , Prostatic Neoplasms/mortality , Residence Characteristics/statistics & numerical data , Adult , Black or African American/statistics & numerical data , Aged , Humans , Incidence , Income/statistics & numerical data , Male , Middle Aged , Philadelphia/epidemiology , SEER Program
8.
BMC Public Health ; 18(1): 1060, 2018 Aug 23.
Article in English | MEDLINE | ID: mdl-30139347

ABSTRACT

BACKGROUND: Patient reports of health related quality of life can provide important information about the long-term impact of prostate cancer. Because patient symptoms and function can differ by age of the survivor, the aim of our study was to examine patient-reported quality of life and prostate symptoms by age at diagnosis among a registry of Dutch prostate cancer survivors. METHODS: A population of 617 individuals from the Patient Reported Outcomes Following Initial Treatment and Long-Term Evaluation of Survivorship (PROFILES) database was surveyed using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC-QLQ-C30) and prostate symptom (EORTC QLQ-PR25) scales. Age at diagnosis was the main independent variable, with three age categories: 60Ā years and younger, 61-70Ā years, and 71Ā years and older. Dependent variables were the EORTC-QLQ-C30 and EORTC QLQ-PR25 scales, divided into positive and negative outcomes. Positive measures of health-related quality of life included global health, physical functioning, role functioning, emotional functioning, cognitive functioning, and social functioning. Negative outcomes included fatigue, nausea, pain, dyspnea, insomnia, appetite, constipation, and diarrhea. We also assessed sexual activity, and urinary, bowel and hormonal symptoms. Descriptive analyses included frequencies with chi-square tests and medians with Kruskal-Wallis tests. Multivariable adjusted analyses were conducted by median regression modeling. RESULTS: Among the numerous scales showing some unadjusted association with age group, only two scales demonstrated significant differences between prostate cancer patients age 71+ compared to the youngest group (age < 61) after multivariable adjustment. On average, the oldest patients experienced an 8.3-point lower median physical functioning score (Ɵ = - 8.3; 95% CI = - 13.9, - 2.8; p = 0.003) and a 16.7-point lower median sexual activity score (Ɵ = - 16.7; 95% CI = - 24.7, - 8.6; p < 0.001) while controlling for BMI, marital status, time since diagnosis, comorbidities (heart condition), Gleason score, and treatment (prostatectomy). CONCLUSIONS: Results suggest that patient age at diagnosis should be considered among factors that contribute to health-related quality of life outcomes for prostate cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: A possible reevaluation of screening recommendations may be appropriate to acknowledge age as a factor contributing to health-related quality of life outcomes for prostate cancer survivors.


Subject(s)
Age of Onset , Cancer Survivors/statistics & numerical data , Health Status , Prostatic Neoplasms/therapy , Quality of Life , Aged , Humans , Male , Middle Aged , Netherlands , Registries , Treatment Outcome
9.
J Cancer Educ ; 33(1): 180-185, 2018 02.
Article in English | MEDLINE | ID: mdl-27418065

ABSTRACT

This study aimed to explore the effects of a decision support intervention (DSI) and shared decision making (SDM) on knowledge, perceptions about treatment, and treatment choice among men diagnosed with localized low-risk prostate cancer (PCa). At a multidisciplinary clinic visit, 30 consenting men with localized low-risk PCa completed a baseline survey, had a nurse-mediated online DS session to clarify preference for active surveillance (AS) or active treatment (AT), and met with clinicians for SDM. Participants also completed a follow-up survey at 30Ā days. We assessed change in treatment knowledge, decisional conflict, and perceptions and identified predictors of AS. At follow-up, participants exhibited increased knowledge (p < 0.001), decreased decisional conflict (p < 0.001), and more favorable perceptions of AS (p = 0.001). Furthermore, 25 of the 30 participants (83Ā %) initiated AS. Increased family and clinician support predicted this choice (p < 0.001). DSI/SDM prepared patients to make an informed decision. Perceived support of the decision facilitated patient choice of AS.


Subject(s)
Choice Behavior , Decision Making , Population Surveillance , Practice Patterns, Physicians' , Prostatic Neoplasms/diagnosis , Prostatic Neoplasms/therapy , Watchful Waiting/methods , Humans , Male , Middle Aged , Patient Participation , Pilot Projects
10.
Cancer Discov ; 14(4): 569-572, 2024 Apr 04.
Article in English | MEDLINE | ID: mdl-38571420

ABSTRACT

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.


Subject(s)
Neoplasms , Humans , Neoplasms/therapy , Neoplasms/drug therapy , Base Pairing , Precision Medicine , Medical Oncology , Genomics
11.
J Natl Cancer Inst ; 2024 Sep 23.
Article in English | MEDLINE | ID: mdl-39312690

ABSTRACT

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.

12.
Vaccine ; 42(7): 1704-1713, 2024 Mar 07.
Article in English | MEDLINE | ID: mdl-38355317

ABSTRACT

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 9-14Ā 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, 81Ā % were definitely or likely to vaccinate their child against HPV, with 12Ā % being uncertain, and 7Ā % unlikely to vaccinate. Regarding routine vaccination, most (70Ā %) felt their attitudes had not changed, while 26Ā % felt more positively, and only 4Ā % 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.


Subject(s)
COVID-19 , Papillomavirus Infections , Papillomavirus Vaccines , Child , Humans , Adolescent , Motivation , Papillomavirus Infections/prevention & control , Pandemics/prevention & control , COVID-19/prevention & control , Parents , Health Knowledge, Attitudes, Practice , Intention , Vaccination , Papillomavirus Vaccines/therapeutic use
13.
JAMA Netw Open ; 7(9): e2432718, 2024 Sep 03.
Article in English | MEDLINE | ID: mdl-39254972

ABSTRACT

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.


Subject(s)
Psychometrics , Telemedicine , Humans , Male , Telemedicine/statistics & numerical data , Female , Middle Aged , Adult , Psychometrics/methods , Qualitative Research , Reproducibility of Results , Surveys and Questionnaires , Aged , Digital Health
14.
J Natl Cancer Inst Monogr ; 2024(66): 267-274, 2024 Aug 15.
Article in English | MEDLINE | ID: mdl-39108237

ABSTRACT

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.


Subject(s)
Analgesics, Opioid , Cancer Pain , Medical Marijuana , Neoplasms , Adult , Aged , Female , Humans , Male , Middle Aged , Analgesics, Opioid/therapeutic use , Black or African American , Cancer Care Facilities/statistics & numerical data , Cancer Pain/drug therapy , Cancer Pain/etiology , Medical Marijuana/therapeutic use , National Cancer Institute (U.S.) , Neoplasms/complications , Neoplasms/therapy , Neoplasms/epidemiology , Pain Management/methods , Perception , Socioeconomic Factors , United States/epidemiology , White
15.
JAMA Otolaryngol Head Neck Surg ; 150(8): 713-724, 2024 Aug 01.
Article in English | MEDLINE | ID: mdl-38900443

ABSTRACT

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.


Subject(s)
Comprehension , Head and Neck Neoplasms , Health Literacy , Patient Education as Topic , Humans , Head and Neck Neoplasms/therapy
16.
JMIR Cancer ; 10: e56048, 2024 Sep 30.
Article in English | MEDLINE | ID: mdl-39348891

ABSTRACT

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.


Subject(s)
Black or African American , Neoplasms , Humans , Cross-Sectional Studies , Male , Female , Middle Aged , Neoplasms/therapy , Neoplasms/ethnology , Black or African American/psychology , Adult , Health Knowledge, Attitudes, Practice/ethnology , Clinical Trials as Topic , Healthcare Disparities/ethnology , Aged , Health Literacy , United States , Decision Making , Patient Participation/psychology
17.
JCO Precis Oncol ; 8: e2300552, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38452310

ABSTRACT

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.


Subject(s)
Genetic Counseling , Prostatic Neoplasms , Humans , Male , Genetic Counseling/methods , Genetic Testing , Germ Cells , Health Knowledge, Attitudes, Practice , Prostatic Neoplasms/diagnosis , Prostatic Neoplasms/genetics , Prostatic Neoplasms/therapy
18.
Otolaryngol Head Neck Surg ; 169(3): 520-527, 2023 09.
Article in English | MEDLINE | ID: mdl-36125900

ABSTRACT

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.


Subject(s)
Head and Neck Neoplasms , Papillomavirus Infections , Humans , Squamous Cell Carcinoma of Head and Neck , Papillomavirus Infections/complications , Papillomavirus Infections/diagnosis , Sexual Behavior , Sexual Partners , Head and Neck Neoplasms/diagnosis , Head and Neck Neoplasms/therapy , Human Papillomavirus Viruses
19.
Contemp Clin Trials ; 125: 107061, 2023 02.
Article in English | MEDLINE | ID: mdl-36567059

ABSTRACT

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.


Subject(s)
Neoplasms , Humans , Logistic Models , Linear Models , Neoplasms/epidemiology , Neoplasms/therapy , Residence Characteristics
20.
Telemed Rep ; 4(1): 387-395, 2023.
Article in English | MEDLINE | ID: mdl-38169980

ABSTRACT

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.

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