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'It Just Makes Sense to Me': A qualitative study exploring patient decision-making and experiences with prostate MRI during active surveillance for prostate cancer

Sutherland, Ryan; Gross, Cary P; Ma, Xiaomei; Jeong, Farah; Seibert, Tyler M; Cooperberg, Matthew R; Catalona, William J; Ellis, Shellie D; Loeb, Stacy; Schulman-Green, Dena; Leapman, Michael S
INTRODUCTION/UNASSIGNED:Although prostate magnetic resonance imaging (MRI) is commonly used in the diagnosis, staging and active surveillance of prostate cancer, little is known about patient perspectives on MRI. METHODS/UNASSIGNED:We performed a qualitative study consisting of in-depth, semi-structured interviews of patients with low- and intermediate-risk prostate cancer managed with active surveillance. Interviews focused on experiences with and knowledge of prostate MRI and MRI-ultrasound fusion biopsy during active surveillance. We purposively sampled patients who received prostate MRI as part of their clinical care, conducted interviews until reaching thematic saturation and performed conventional content analysis to analyse data. RESULTS/UNASSIGNED:Twenty patients aged 51-79 years (mean = 68 years) participated in the study. At diagnosis, 17 (85%) had a Gleason grade group 1, and three (15%) had a grade group 2 tumour. Overall, participants viewed prostate MRI as a valuable tool that accurately localizes and monitors prostate cancer over time, and they considered prostate MRI central to active surveillance monitoring. We identified five thematic categories related to MRI use: (1) the experiential aspects of undergoing an MRI scan; (2) the experience of visualizing one's own prostate and prostate cancer; (3) adequacy of provider explanations of MRI results; (4) confidence in prostate MRI in decision-making; and (5) the role of prostate MRI in longitudinal follow-up, including an interest in using MRI to modify the timing of, or replace, prostate biopsy. CONCLUSION/UNASSIGNED:Patients value prostate MRI as a tool that enhances their confidence in the initial diagnosis and monitoring of prostate cancer. This work can inform future studies to optimize patient experience, education and counselling during active surveillance for prostate cancer.
PMCID:11168777
PMID: 38873351
ISSN: 2688-4526
CID: 5669442

TARGET: A Randomized, Noninferiority Trial of a Pretest, Patient-Driven Genetic Education Webtool Versus Genetic Counseling for Prostate Cancer Germline Testing

Loeb, Stacy; Keith, Scott W; Cheng, Heather H; Leader, Amy E; Gross, Laura; Sanchez Nolasco, Tatiana; Byrne, Nataliya; Hartman, Rebecca; Brown, Lauren H; Pieczonka, Christopher Michael; Gomella, Leonard G; Kelly, William Kevin; Lallas, Costas D; Handley, Nathan; Mille, Patrick Johnston; Mark, James Ryan; Brown, Gordon Andrew; Chopra, Sameer; McClellan, Alexandra; Wise, David R; Hollifield, Lucas; Giri, Veda N
PURPOSE/OBJECTIVE: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:= .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/CONCLUSIONS: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.
PMCID:10939575
PMID: 38452310
ISSN: 2473-4284
CID: 5645652

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

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

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