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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

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

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

Patient experiences with tissue-based genomic testing during active surveillance for prostate cancer

Leapman, Michael S.; Sutherland, Ryan; Gross, Cary P.; Ma, Xiaomei; Seibert, Tyler M.; Cooperberg, Matthew R.; Catalona, William J.; Loeb, Stacy; Schulman-Green, Dena
Background: Tissue-based gene expression (genomic) tests provide estimates of prostate cancer aggressiveness and are increasingly used for patients considering or engaged in active surveillance. However, little is known about patient experiences with genomic testing and its role in their decision-making. Methods: We performed a qualitative study consisting of in-depth, semi-structured interviews of patients with low- or favourable-intermediate-risk prostate cancer managed with active surveillance. We purposively sampled to include patients who received biopsy-based genomic testing as part of clinical care. The interview guide focused on experiences with genomic testing during patients' decision-making for prostate cancer management and understanding of genomic test results. We continued interviews until thematic saturation was reached, iteratively created a code key and used conventional content analysis to analyse data. Results: Participants' (n = 20) mean age was 68 years (range 51"“79). At initial biopsy, 17 (85%) had a Gleason grade group 1, and 3 (15%) had a grade group 2 prostate cancer. The decision to undergo genomic testing was driven by both participants and physicians' recommendations; however, some participants were unaware that testing had occurred. Overall, participants understood the role of genomic testing in estimating their prostate cancer risk, and the test results increased their confidence in the decision for active surveillance. Participants had some misconceptions about the difference between tissue-based gene expression tests and germline genetic tests and commonly believed that tissue-based tests measured hereditary cancer risk. While some participants expressed satisfaction with their physicians' explanations, others felt that communication was limited and lacked sufficient detail. Conclusion: Patients interact with and are influenced by the results of biopsy-based genomic testing during active surveillance for prostate cancer, despite gaps in understanding about test results. Our findings indicate areas for improvement in patient counselling in order to increase patient knowledge and comfort with genomic testing.
SCOPUS:85181463916
ISSN: 2688-4526
CID: 5630292

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

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.
SCOPUS:85180357934
ISSN: 2352-3727
CID: 5620872

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

Dietary and Lifestyle Recommendations that Align Patient and Planetary Health

Cole, Alexander P; Loeb, Stacy
Environmental factors such as air pollution and climate change have far-reaching implications for human health, and increasing evidence supports a link between planetary health and many common urological conditions. We summarize these links and outline the data for some dietary and lifestyle changes that have joint benefits for both urological and planetary health. PATIENT SUMMARY: Steps to reduce our impact on the environment can also reduce the risk of urological cancers (bladder, prostate, and kidney cancers), urinary tract infections, kidney stones, and erectile dysfunction, and may have a positive impact on sperm quality. Simple steps such as reducing meat and dairy consumption, increasing exercise levels (e.g. through active commuting), and supporting the preservation of greenspace can benefit both personal health and the environment.
PMID: 37770372
ISSN: 2405-4569
CID: 5613072

Assessment of Artificial Intelligence Chatbot Responses to Top Searched Queries About Cancer [Comment]

Pan, Alexander; Musheyev, David; Bockelman, Daniel; Loeb, Stacy; Kabarriti, Abdo E
IMPORTANCE/UNASSIGNED:Consumers are increasingly using artificial intelligence (AI) chatbots as a source of information. However, the quality of the cancer information generated by these chatbots has not yet been evaluated using validated instruments. OBJECTIVE/UNASSIGNED:To characterize the quality of information and presence of misinformation about skin, lung, breast, colorectal, and prostate cancers generated by 4 AI chatbots. DESIGN, SETTING, AND PARTICIPANTS/UNASSIGNED:This cross-sectional study assessed AI chatbots' text responses to the 5 most commonly searched queries related to the 5 most common cancers using validated instruments. Search data were extracted from the publicly available Google Trends platform and identical prompts were used to generate responses from 4 AI chatbots: ChatGPT version 3.5 (OpenAI), Perplexity (Perplexity.AI), Chatsonic (Writesonic), and Bing AI (Microsoft). EXPOSURES/UNASSIGNED:Google Trends' top 5 search queries related to skin, lung, breast, colorectal, and prostate cancer from January 1, 2021, to January 1, 2023, were input into 4 AI chatbots. MAIN OUTCOMES AND MEASURES/UNASSIGNED:The primary outcomes were the quality of consumer health information based on the validated DISCERN instrument (scores from 1 [low] to 5 [high] for quality of information) and the understandability and actionability of this information based on the understandability and actionability domains of the Patient Education Materials Assessment Tool (PEMAT) (scores of 0%-100%, with higher scores indicating a higher level of understandability and actionability). Secondary outcomes included misinformation scored using a 5-item Likert scale (scores from 1 [no misinformation] to 5 [high misinformation]) and readability assessed using the Flesch-Kincaid Grade Level readability score. RESULTS/UNASSIGNED:The analysis included 100 responses from 4 chatbots about the 5 most common search queries for skin, lung, breast, colorectal, and prostate cancer. The quality of text responses generated by the 4 AI chatbots was good (median [range] DISCERN score, 5 [2-5]) and no misinformation was identified. Understandability was moderate (median [range] PEMAT Understandability score, 66.7% [33.3%-90.1%]), and actionability was poor (median [range] PEMAT Actionability score, 20.0% [0%-40.0%]). The responses were written at the college level based on the Flesch-Kincaid Grade Level score. CONCLUSIONS AND RELEVANCE/UNASSIGNED:Findings of this cross-sectional study suggest that AI chatbots generally produce accurate information for the top cancer-related search queries, but the responses are not readily actionable and are written at a college reading level. These limitations suggest that AI chatbots should be used supplementarily and not as a primary source for medical information.
PMID: 37615960
ISSN: 2374-2445
CID: 5599362

The Plant-based Prescription: How Dietary Change Can Improve Both Urological and Planetary Health [Editorial]

Cole, Alexander P; Gupta, Natasha; Loeb, Stacy
In this editorial, we discuss the relationship between meat consumption and many major urological conditions (eg, prostate cancer, kidney stones, urinary tract infections) and how dietary choices could simultaneously benefit genitourinary health and the environment, which in turn will have downstream impacts on public health.
PMID: 37451898
ISSN: 1873-7560
CID: 5537942