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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/UNASSIGNED: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/UNASSIGNED: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/UNASSIGNED: = 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/UNASSIGNED: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.
PMCID:10764160
PMID: 38179031
ISSN: 2688-4526
CID: 5737312

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/UNASSIGNED: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/UNASSIGNED: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/UNASSIGNED: = 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/UNASSIGNED: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.
PMCID:10764160
PMID: 38179031
ISSN: 2688-4526
CID: 5737332

Cancer misinformation on social media

Loeb, Stacy; Langford, Aisha T; Bragg, Marie A; Sherman, Robert; Chan, June M
Social media is widely used globally by patients, families of patients, health professionals, scientists, and other stakeholders who seek and share information related to cancer. Despite many benefits of social media for cancer care and research, there is also a substantial risk of exposure to misinformation, or inaccurate information about cancer. Types of misinformation vary from inaccurate information about cancer risk factors or unproven treatment options to conspiracy theories and public relations articles or advertisements appearing as reliable medical content. Many characteristics of social media networks-such as their extensive use and the relative ease it allows to share information quickly-facilitate the spread of misinformation. Research shows that inaccurate and misleading health-related posts on social media often get more views and engagement (e.g., likes, shares) from users compared with accurate information. Exposure to misinformation can have downstream implications for health-related attitudes and behaviors. However, combatting misinformation is a complex process that requires engagement from media platforms, scientific and health experts, governmental organizations, and the general public. Cancer experts, for example, should actively combat misinformation in real time and should disseminate evidence-based content on social media. Health professionals should give information prescriptions to patients and families and support health literacy. Patients and families should vet the quality of cancer information before acting upon it (e.g., by using publicly available checklists) and seek recommended resources from health care providers and trusted organizations. Future multidisciplinary research is needed to identify optimal ways of building resilience and combating misinformation across social media.
PMID: 38896503
ISSN: 1542-4863
CID: 5672152

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

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

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

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

Practice Patterns Regarding Female Reproductive Organ-Sparing and Nerve-Sparing Radical Cystectomy Among Urologic Oncologists in the United States

Gupta, Natasha; Kucirka, Lauren; Semerjian, Alice; Pierorazio, Phillip M; Loeb, Stacy; Bivalacqua, Trinity J
BACKGROUND:Female reproductive organ-sparing (ROS) and nerve-sparing radical cystectomy (RC) techniques have been shown to be oncologically safe and to improve sexual function outcomes among select patients with organ-confined disease. We sought to characterize practice patterns regarding female ROS and nerve-sparing RC among US urologists. PATIENTS AND METHODS:We conducted a cross-sectional survey of members of the Society of Urologic Oncology to assess provider-reported frequency of ROS and nerve-sparing RC in premenopausal and postmenopausal patients with non-muscle-invasive bladder cancer that failed intravesical therapy or clinically localized muscle-invasive bladder cancer. RESULTS:Among 101 urologists, 80 (79.2%) reported that they routinely resect the uterus/cervix, 68 (67.3%) the neurovascular bundle, 49 (48.5%) the ovaries, and 19 (18.8%) a portion of the vagina when performing RC in premenopausal patients with organ-confined disease. When asked about changes to approach in postmenopausal patients, 71 participants (70.3%) reported that they were less likely to spare the uterus/cervix, 44 (43.6%) were less likely to spare the neurovascular bundle, 70 (69.3%) were less likely to spare the ovaries, and 23 (22.8%) were less likely to spare a portion of the vagina. CONCLUSION:We identified significant gaps in adoption of female ROS and nerve-sparing RC techniques for patients with organ-confined disease, despite evidence that ROS and nerve-sparing techniques are oncologically safe and can optimize functional outcomes in select patients. Future efforts should improve provider training in and education about ROS and nerve-sparing RC to improve postoperative outcomes among female patients.
PMID: 36801170
ISSN: 1938-0682
CID: 5594162