Publications by authors named "Amy Leader"

Introduction: Acute food insecurity (FI) significantly impacts cancer patients' health, exacerbating physical and psychological burdens. While current interventions address chronic FI, acute cases remain undermanaged. Legacy of Hope, a Philadelphia-based non-profit, addresses this gap through its Emergency Patient Support Network (EPSN), offering free bi-weekly groceries to patients facing acute FI.

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Objective: To improve mechanistic understanding, this randomized controlled trial examined anxiety, mood, emotional support, and pain-related self-efficacy as mediators of music therapy for pain management in people with advanced cancer.

Methods: People with advanced cancer who had chronic pain were randomized (1:1) to 6 weekly individual music therapy or social attention control sessions. We measured mediators and pain outcomes (pain interference and pain intensity) using self-report measures at baseline, session 4, and post-intervention.

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Background: Despite the importance of community involvement in research, little formal training in community outreach and engagement (COE) is offered to cancer research trainees. A collaboration between the Office of COE and the Office of Cancer Research Training and Education Coordination (CRTEC) at the Sidney Kimmel Comprehensive Cancer Center at Jefferson led to the COE-CRTEC Trainee Working Group, a unique program in which trainees in cancer research each created a novel COE initiative.

Methods: Four cancer research trainees were selected to serve as COE Program Liaisons (CPLs), each aligned with one of the four cancer center research programs.

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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.

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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.

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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.

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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.

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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.

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Article Synopsis
  • Prescription opioids are commonly used to manage pain in cancer patients, but there are significant disparities in access based on socioeconomic status and race.
  • A study of 1,220 patients revealed that Black patients were less likely to use opioids and more likely to find cannabis more effective compared to White patients; this racial difference lessened when controlling for socioeconomic factors.
  • The findings indicate a need for further research to explore how social determinants of health affect the use of cannabis and opioids in managing cancer symptoms, particularly for Black patients.
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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.

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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.

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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.

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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.

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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.

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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.

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Purpose: Cancer patients who remain tobacco users have poorer outcomes, including increased mortality and decreased treatment tolerance; however, cessation post-diagnosis is challenging. Our formative research explored cessation-related perspectives among patients and staff at one National Cancer Institute-designated cancer center, to inform improving cessation services within oncology care.

Methods: Using a descriptive phenomenological approach, a purposive sample of current cancer patients (n = 13) and cancer center physicians and cessation program staff (n = 9) were recruited to complete one-on-one audio-recorded in-depth qualitative interviews, to explore experiences providing or receiving cessation support, and perspectives on patients' readiness and needs regarding cessation.

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Article Synopsis
  • The LGBTQ+ community faces higher cancer risks and lower screening rates due to gaps in health literacy and systemic barriers, prompting a study of healthcare providers' perceptions and knowledge on the issue.
  • A survey of 355 physicians revealed that only 28% had training related to LGBTQ+ health, with most acknowledging unique health issues but lacking confidence and consensus regarding cancer screenings for these patients.
  • The findings highlight the need for enhanced training for healthcare providers and clearer screening guidelines to better address the specific needs of LGBTQ+ individuals in cancer care.
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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.

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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.

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Introduction: Telehealth (TH) utilization in cancer care prior to COVID-19 was variable. Research highlights disparities in access determined by socioeconomic factors including education, income, race, and age. In response to COVID-19 and these disparities, we assessed the impact of a personalized digital support structure, the Telehealth Task Force (TTF), to reduce disparities in TH.

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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.

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