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Qualitative Study on Internet Use and Care Impact for Black Men With Prostate Cancer

Loeb, Stacy; Sanchez Nolasco, Tatiana; Byrne, Nataliya; Allen, Laura; Langford, Aisha T; Ravenell, Joseph E; Gomez, Scarlett Lin; Washington, Samuel L; Borno, Hala T; Griffith, Derek M; Criner, Nickole
Black men have a greater risk of prostate cancer as well as worse quality of life and more decisional regret after prostate cancer treatment compared to non-Hispanic White men. Furthermore, patients with prostate cancer who primarily obtain information on the internet have significantly more decisional regret compared to other information sources. Our objective was to explore the perspectives of Black patients on the use and impact of the internet for their prostate cancer care. In 2022-2023, we conducted seven virtual focus groups with Black patients with prostate cancer (n = 22). Transcripts were independently analyzed by two experienced researchers using a constant comparative method. Online sources were commonly used by participants throughout their cancer journey, although informational needs varied over time. Patient factors affected use (e.g., physical health and experience with the internet), and family members played an active role in online information-seeking. The internet was used before and after visits to the doctor. Key topics that participants searched for online included nutrition and lifestyle, treatment options, and prostate cancer in Black men. Men reported many downstream benefits with internet use including feeling more empowered in decision-making, reducing anxiety about treatment and providing greater accountability for research. However, they also reported negative impacts such as feeling overwhelmed or discouraged sorting through the information to identify high-quality content that is personally relevant, as well as increased anxiety or loss of sleep from overuse. In summary, online sources have the potential to positively impact the cancer journey by reinforcing or supplementing information from health care providers, but can be harmful if the information is poor quality, not representative, or the internet is overused.
PMID: 38366884
ISSN: 1552-6127
CID: 5636122

Representation Matters: Trust in Digital Health Information Among Black Patients With Prostate Cancer

Loeb, Stacy; Sanchez Nolasco, Tatiana; Byrne, Nataliya; Allen, Laura; Langford, Aisha T; Ravenell, Joseph; Gomez, Scarlett Lin; Washington, Samuel L; Borno, Hala T; Griffith, Derek M; Criner, Nickole
PURPOSE/UNASSIGNED:Although the majority of US adults obtain health information on the internet, the quality of information about prostate cancer is highly variable. Black adults are underrepresented in online content about prostate cancer despite a higher incidence of and mortality from the disease. The goal of this study was to explore the perspectives of Black patients with prostate cancer on the importance of racial representation in online content and other factors influencing trust. MATERIALS AND METHODS/UNASSIGNED:We conducted 7 virtual focus groups with Black patients with prostate cancer in 2022 and 2023. Participants completed an intake questionnaire with demographics followed by a group discussion, including feedback on purposefully selected online content. Transcripts were independently analyzed by 2 investigators experienced in qualitative research using a constant comparative method. RESULTS/UNASSIGNED:Most participants use online sources to look for prostate cancer information. Racial representation is an important factor affecting trust in the content. A lack of Black representation has consequences, including misperceptions about a lower risk of prostate cancer and discouraging further information-seeking. Other key themes affecting trust in online content included the importance of a reputable source of information, professional website structure, and soliciting money. CONCLUSIONS/UNASSIGNED:Underrepresentation of Black adults in prostate cancer content has the potential to worsen health disparities. Optimal online communications should include racially diverse representation and evidence-based information in a professional format from reputable sources without financial conflict.
PMID: 38329047
ISSN: 1527-3792
CID: 5632372

Experiences of oncology researchers in the Veterans Health Administration during the COVID-19 pandemic

Becker, Daniel J; Csehak, Kenneth; Barbaro, Alexander M; Roman, Stefanie D; Loeb, Stacy; Makarov, Danil V; Sherman, Scott; Lim, Sahnah
The Veterans Health Administration is chartered "to serve as the primary backup for any health care services needed…in the event of war or national emergency" according to a 1982 Congressional Act. This mission was invoked during the COVID-19 pandemic to divert clinical and research resources. We used an electronic mixed-methods questionnaire constructed using the Theoretical Domains Framework (TDF) and the Capability, Opportunity, and Motivation (COM-B) model for behavior change to study the effects of the pandemic on VHA researchers. The questionnaire was distributed electronically to 118 cancer researchers participating in national VHA collaborations. The questionnaire received 42 responses (36%). Only 36% did not feel that their research focus changed during the pandemic. Only 26% reported prior experience with infectious disease research, and 74% agreed that they gained new research skills. When asked to describe helpful support structures, 29% mentioned local supervisors, mentors, and research staff, 15% cited larger VHA organizations and 18% mentioned remote work. Lack of timely communication and remote work, particularly for individuals with caregiving responsibilities, were limiting factors. Fewer than half felt professionally rewarded for pursuing research related to COVID. This study demonstrated the tremendous effects of the COVID-19 pandemic on research activities of VHA investigators. We identified perceptions of insufficient recognition and lack of professional advancement related to pandemic-era research, yet most reported gaining new research skills. Individualizing the structure of remote work and ensuring clear and timely team communication represent high yield areas for improvement.
PMCID:10807772
PMID: 38266017
ISSN: 1932-6203
CID: 5624962

Prostate cancer and podcasts: an analysis and assessment of the quality of information about prostate cancer available on podcasts

Scott, Colin; Campbell, Peter; Nemirovsky, Amy; Loeb, Stacy; Malik, Rena
Podcasts represent a new source of information for patients and families dealing with prostate cancer, but no studies have been conducted evaluating the quality of information in them. Evaluating for: (1) quality based on the validated DISCERN criteria, (2) understandability and actionability based on the Patient Education Materials Assessment Tool (PEMAT), (3) misinformation, and (4) commercial bias, we concluded that podcasts are currently not good sources of information for lay health consumers.
PMID: 37491431
ISSN: 1476-5608
CID: 5618832

Climate change perception and its association with cancer screening intent

Qian, Zhiyu; Beatrici, Edoardo; Trinh, Quoc-Dien; Kibel, Adam S; Loeb, Stacy; Iyer, Hari S; Cole, Alexander P
As the climate crisis deepens, its adverse effects on human health are becoming evident, including impacts on cancer pathogenesis and treatment. This study explored the link between individuals' awareness of the health impacts of climate change and interest in cancer screening. Using the 2021 Health Information National Trends Survey, our study demonstrated a statistically significant association between recognition of climate change as a personal health threat and interest in cancer screening. Although the study's retrospective nature and self-reported data pose some limitations, these findings signal a promising avenue for future research on the intersection of climate and cancer risk. This research supports the development of public health interventions that incorporate components of environmental health literacy alongside cancer screening efforts.
PMID: 38086539
ISSN: 1460-2105
CID: 5589222

TikTok and YouTube Videos on Overactive Bladder Exhibit Poor Quality and Diversity

Kanner, Jenna; Waghmarae, Suneet; Nemirovsky, Amy; Wang, Shu; Loeb, Stacy; Malik, Rena
INTRODUCTION:We sought to assess the quality, understandability, actionability, and diversity of speakers in videos on TikTok and YouTube regarding overactive bladder. METHODS:Using Application Program Interface, the top 500 TikTok and 120 YouTube videos on overactive bladder were retrieved. Videos unrelated to overactive bladder, those not in English, longer than 10 minutes, or lacking both text and audio were excluded. Surgical technique videos for providers were also excluded. Videos were scored by trained raters using 2 validated instruments: PEMAT (Agency for Healthcare Research and Quality's Patient Education Materials Assessment Tool) for actionability and understandability, and the DISCERN instrument for quality of consumer health information. We also examined for evidence of misinformation and commercial bias. RESULTS:= .769). Twenty-three percent of TikTok and 11% of YouTube videos had high misinformation (score >3). Commercial bias was present in 10% of TikTok and 19% of YouTube videos. CONCLUSIONS:Actionability, understandability, and quality for overactive bladder-related content is poor on YouTube and TikTok. With increasing access to social media, it is important that health care providers and organizations invest resources in patient education on health literacy.
PMID: 37347790
ISSN: 2352-0787
CID: 5738152

Accuracy of prostate cancer screening recommendations for high-risk populations on YouTube and TikTok

Abramson, Max; Feiertag, Nathan; Javidi, Darius; Babar, Mustufa; Loeb, Stacy; Watts, Kara
OBJECTIVES/UNASSIGNED:This study aimed to evaluate content quality and racial/ethnic representation, particularly of high-risk cohorts, of prostate cancer screening videos on YouTube (YT) and TikTok (TK). MATERIALS AND METHODS/UNASSIGNED:The top 50 videos populated for the search term 'prostate cancer screening' on YT and TK that met inclusion criteria were retrieved in a cache-cleared browser. Three reviewers analysed all videos using validated criteria for the quality of consumer health information (DISCERN and Patient Education Materials Assessment Tool [PEMAT]). High quality was defined as follows: DISCERN ≥ 4, PEMAT understandability ≥75% and PEMAT actionability ≥75%. A 5-point Likert scale was used to demonstrate the level of misinformation compared to American Urological Association and National Comprehensive Cancer Network guidelines. Perceived race and ethnicity of people in the videos were assessed by consensus approach. RESULTS/UNASSIGNED: = 0.03) than YT videos. Perceived Black and Hispanic representation was present in 10% and 6% of YT videos and 20% and 12% of TK videos, respectively. High-risk racial/ethnic groups were explicitly discussed in 46% of YT videos and 8% of TK videos. A total of 98% of YT videos and 100% of TK videos had low- to moderate-quality consumer health information, and 88% of YT videos and 100% of TK videos had moderate to high levels of misinformation based on screening guidelines. CONCLUSIONS/UNASSIGNED:YT and TK videos about prostate cancer screening are widely viewed but do not provide quality consumer health information. Black and Hispanic men remain under-represented on both platforms, and high-risk racial groups were not discussed in most videos despite the importance for screening criteria. The low understandability and actionability, significant misinformation and lack of diversity in online videos support the need for higher quality videos with adequate attention to high-risk ethnic cohorts.
PMCID:9931542
PMID: 36816146
ISSN: 2688-4526
CID: 5737992

Genetic Risk Prediction for Prostate Cancer: Implications for Early Detection and Prevention

Seibert, Tyler M; Garraway, Isla P; Plym, Anna; Mahal, Brandon A; Giri, Veda; Jacobs, Michelle F; Cheng, Heather H; Loeb, Stacy; Helfand, Brian T; Eeles, Rosalind A; Morgan, Todd M
CONTEXT:Prostate cancer (PCa) is a leading cause of death and partially heritable. Genetic risk prediction might be useful for strategies to reduce PCa mortality through early detection and prevention. OBJECTIVE:To review evidence for genetic risk prediction for PCa. EVIDENCE ACQUISITION:A collaborative literature review was conducted using PubMed and Google Scholar. Search terms included genetic, risk, prediction, and "prostate cancer". Articles addressing screening, early detection, or prevention were prioritized, as were studies involving diverse populations. EVIDENCE SYNTHESIS:Rare pathogenic mutations (RPMs), especially in DNA damage repair genes, increase PCa risk. RPMs in BRCA2 are most clearly deleterious, conferring 2-8.6 times higher risk of PCa and a higher risk of aggressive disease. Common genetic variants can be combined into genetic risk scores (GRSs). A high GRS (top 20-25% of the population) confers two to three times higher risk of PCa than average; a very high GRS (top 1-5%) confers six to eight times higher risk. GRSs are not specific for aggressive PCa, possibly due to methodological limitations and/or a field effect of an elevated risk for both low- and high-grade PCa. It is challenging to disentangle genetics from structural racism and social determinants of health to understand PCa racial disparities. GRSs are independently associated with a lethal PCa risk after accounting for family history and race/ancestry. Healthy lifestyle might partially mitigate the risk of lethal PCa. CONCLUSIONS:Genetic risk assessment is becoming more common; implementation studies are needed to understand the implications and to avoid exacerbating healthcare disparities. Men with a high genetic risk of PCa can reasonably be encouraged to adhere to a healthy lifestyle. PATIENT SUMMARY:Prostate cancer risk is inherited through rare mutations and through the combination of hundreds of common genetic markers. Some men with a high genetic risk (especially BRCA2 mutations) likely benefit from early screening for prostate cancer. The risk of lethal prostate cancer can be reduced through a healthy lifestyle.
PMID: 36609003
ISSN: 1873-7560
CID: 5737962

Usefulness of podcasts to provide public education on prostate cancer genetics

Loeb, Stacy; Sanchez Nolasco, Tatiana; Siu, Katherine; Byrne, Nataliya; Giri, Veda N
BACKGROUND:Podcasts, or episodic digital audio recordings, represent a novel way to reach large audiences for public education. Genetic evaluation has important implications for prostate cancer (PCa) care but is underutilized. We created a series of five podcasts about PCa genetics and tested their usefulness in raising awareness and providing education to lay audiences. METHODS:We recruited 157 men and women from the general public and 100 patients with PCa from across the U.S., who listened to a podcast and completed an online survey. The primary outcome was the perceived usefulness of the podcast (score ≥5 on a published 7-point Likert scale). Secondary outcomes were relevance to informational needs, satisfaction and ease of use, as well as genetic knowledge and attitudes toward genetic testing after listening to the podcasts. RESULTS:The podcasts were associated with high mean scores for perceived usefulness (5.6/7), relevance to informational needs (5.6/7), satisfaction (5.8/7), and ease of use (5.9/7). After listening to the podcasts, 80-100% correctly answered most key knowledge questions about PCa genetics, and 85% had a positive attitude toward genetic testing. On multivariable analysis, the perceived usefulness of the podcasts was higher among Black/Hispanic adults (p = 0.05) and those with a family history of PCa (p = 0.01). CONCLUSIONS:A podcast series on PCa genetics was perceived as useful and associated with high rates of knowledge for patients with PCa and the general public. Podcasts represent a promising new educational tool to raise awareness about PCa genetic evaluation, particularly for high-risk groups.
PMID: 36681741
ISSN: 1476-5608
CID: 5737972

Wake-Up Call to Address Sleep Health in Non-Muscle Invasive Bladder Cancer: Underappreciated Contributor to Poor Quality of Life

Wang, Elizabeth Y; Armas-Phan, Manuel; Meng, Maxwell V; Loeb, Stacy; Kenfield, Stacey A; Porten, Sima P
BACKGROUND:Few studies have specifically examined sleep health in patients with non-muscle invasive bladder cancer (NMIBC). Further study is warranted to inform future strategies in patients with NMIBC. OBJECTIVE:We aim to describe sleep health in a cohort of patients with NMIBC, and its relationship with quality of life (QOL). METHODS:We conducted an observational cross-sectional study in patients undergoing surveillance for NMIBC. The validated Pittsburgh Sleep Quality Index (PSQI) was used to assess sleep health (scores from 0-21) in the overall study population as well as stratified. We assessed QOL among participants with and without poor sleep quality using the SF-12 and QLQ-NMIBC-24. RESULTS:In a cohort of 94 NMIBC patients, median age was 67 years (IQR: 58, 72) and median time since initial diagnosis was 27 months (IQR: 9, 41). The mean PSQI score was 6.3 (SD: 3.8) and 64% percent of participants met or exceeded the PSQI cut-off score of 5, with a score of 5 or more indicating overall poor sleep quality. In those with poor sleep quality, there were statistically significant detriments in multiple QOL domains. CONCLUSIONS:In patients undergoing surveillance for NMIBC, there is a substantial burden of sleep disturbances and resulting decrements in QOL. These data support the need for future interventions to support sleep quality and highlight the importance of addressing sleep health as part of NMIBC survivorship care to improve QOL in patients with NMIBC.
PMCID:10759800
PMID: 38174125
ISSN: 2352-3727
CID: 5737192