Online Patient Research Articles

Perspectives on Telemedicine Visits Reported by Patients With Cancer.

The COVID-19 pandemic catalyzed rapid adoption of telemedicine visits for cancer care delivery. However, patients' experiences with telemedicine remain poorly understood. To understand patients' satisfaction with telemedicine visits at a comprehensive cancer center. This survey study included patients with cancer at a US cancer center between 2020 and 2023. Eligible patients completed surveys in English conducted after their first telemedicine appointment via an online patient portal. Data were analyzed between January and June 2024. Patient surveys about telemedicine experiences, with a specific comparison with an in-person visit. Structured items elicited satisfaction with the specific visit, preferences for future use of telemedicine, and technical ease of use; unstructured free-text responses were also elicited. Proportion of patients who indicated that telemedicine visits were superior or preferred to in-person visits. Secondary outcomes included multivariable analysis of barriers to telemedicine use and variations in patient experiences by demographic characteristics over the observation period, and free-text analysis of unstructured responses describing the telemedicine experience using the BERTopic algorithm and a language model. A total of 27 435 telemedicine users completed surveys from May 2020 to October 2023 (median [IQR] age, 65 [55-72] years; 15 072 female [54.9%]; 1771 Asian [6.7%], 1339 Black [5.1%], 22 742 White [85.9%]). Overall, 18 025 of 24 418 patients (73.8%) rated their first telemedicine visit as good as or better than an in-person visit, and 4606 (18.9%) rated it superior to an in-person visit. The proportion of patients rating a telemedicine visit superior to an in-person visit evolved from 17% in 2020 to 20% in 2023. Structured questions revealed a positive view of telemedicine, while free-text analyses highlighted issues with technology. In this survey study of perspectives on telemedicine visits, a large majority of patients at a comprehensive cancer center expressed satisfaction with telemedicine visits in proportions that remained consistent beyond the end of the pandemic. These findings challenge health care systems to integrate telemedicine into routine cancer care and to overcome remaining technical challenges and barriers to ease of use.

A descriptive survey of patient experiences and access to specialty medicines with alternative funding programs.

Alternative funding programs (AFPs) seek to reduce health plan sponsor costs, for example by excluding specialty drugs from a beneficiary's plan coverage and requiring patients to obtain medications through alternative sources (typically, the manufacturer's patient assistance programs) via an AFP vendor as a third-party. To describe patients' experiences and specialty medication access with AFPs. A survey method consisting of 26 optional single-choice and multiple-choice questions with branching logic divided across 5 sections (related to patient challenges with AFPs) was administered to patients recruited from an experienced AFP online patient panel and a patient advocacy group. The survey assessed patients' awareness of AFPs from their employers, experience with the patient assistance program application process via the AFP vendor, timeliness of medication access (if granted), and/or the health impact of delay in access. All descriptive and exploratory subgroup analyses were conducted by disease area and reported income levels; statistical analyses were carried out for the exploratory analyses. The final sample included 227 patients. Most patients (61% [136/223]) first heard of the AFP as part of their health benefit when trying to obtain their medication. Of 198 patients, 88% reported being stressed because of the medication coverage denial and the uncertainty of obtaining their medication. More than half of patients (54% [115/213]) reported being uncomfortable with the benefits manager from the AFP vendor. On average, patients reported waiting to receive their medication for 68.2 days (approximately 2 months); 24% (51/215) reported the wait for the medication worsened their condition and 64% (138/215) reported the wait led to stress and/or anxiety. Patients who indicated the wait time negatively affected them had considered a job change or left their job at a 3-5-fold higher rate than those who reported no impact from wait time. A significantly higher proportion of patients with hemophilia and other bleeding disorders reported receiving their prescribed medication less often than patients with other conditions (63% [19/30] vs 81% [52/64]; P = 0.022), whereas more patients with lower incomes (<$50,000 vs >$50,000) reported not receiving any medication (12% [7/57] vs 5% [7/129]; P = 0.657), although these differences were not significant. Most patients who obtain their specialty medicines via AFPs reported being uncomfortable with the process and experiencing treatment delays, which may have been linked to disease progression, worsened mental well-being, and consideration of a job change. Employers should be aware of the potential downstream impacts on employee health, retention, and the employee-employer relationship when considering implementing an AFP into their health plan.

Assessing the Readability of Online English and Spanish Resources for Polydactyly and Syndactyly.

Online patient education materials (PEMs) that are difficult to read disproportionately affect patients with low health literacy and educational attainment. Patients may not be fully informed or empowered to engage meaningfully with providers and advocate for their goals. We aim to assess the readability of online PEMs regarding polydactyly and syndactyly. Google was used to query "polydactyly" and "syndactyly" in English and Spanish. The first 50 results were categorized into institutional (government, medical school, teaching hospital), noninstitutional (private practice, blog), and academic (journal articles, book chapters). Readability scores were generated using the Simple Measure of Gobbledygook and Spanish Simple Measure of Gobbledygook scales. All polydactyly PEMs and >95% of syndactyly PEMs exceeded the National Institutes of Health recommended 6th-grade reading level. Altogether, English PEMs had an average reading level of a university freshman and Spanish PEMs had an average reading level of nearly a high school sophomore. For both diagnoses, English PEMs were harder to read than Spanish PEMs overall and when compared across the 3 categories between the 2 languages. Generally, noninstitutional PEMs were more difficult to read than their institutional counterparts. To improve patient education, health literacy, and language equity, online resources for polydactyly and syndactyly should be written at the 6th-grade level. Currently, these PEMs are too advanced, which can make accessing, understanding, and pursuing healthcare decisions more challenging. Understanding health conditions and information is crucial to empower patients, regardless of literacy.

Overshooting the mark? Readability of online patient resources for postmenopausal bleeding as a symptom of endometrial cancer

Overshooting the mark? Readability of online patient resources for postmenopausal bleeding as a symptom of endometrial cancer

An international environmental scan of the scope and characteristics of patient decision aids which are freely available online

ObjectiveTo analyse the scope and characteristics of freely available online patient decision aids. MethodsAn international environmental scan of online decision aids, with no language restriction, was conducted by searching aids in the recent Cochrane review and 35 online sources. Aid characteristics were extracted and analysed. ResultsOf 1555 decision aids identified, there were 1222 unique aids after removing duplicates. Of these, 785 met eligibility criteria. The aids were from 17 countries (30 % from the Netherlands, 20 % from the US) and 44 % in English. Nearly all had a downloadable PDF or were printable and 32 % were interactive web-based. Many aids (72 %) were about a treatment decision. Most common diseases addressed were cancer (23 %), especially breast cancer, musculoskeletal diseases (11 %), and genitourinary system diseases (10 %). ConclusionsThere are many freely available decision aids, with most addressing treatment decisions and particular health conditions. Many (21 %) of the aids identified were duplicates, some topics are covered by multiple versions of decision aids, and other topics have few decision aids. Practice implicationsWhile many decision aids exist online, initiatives are needed to minimise aid duplication, achieve better distribution of aids across health decisions/topics, encourage greater collaboration between developers, and adaption of existing aids.

AUDIT‐C shows reliability when used online in patient portals

The Alcohol Use Disorders Identification Test–Consumption (AUDIT‐C) is a validated screen, but until recently has not been evaluated in routine conditions for adult primary care patients. A new study has found that AUDIT‐C screens have “excellent” test‐retest reliability, which assesses the consistency of results when given at two different times. Excellent test‐retest reliability means that there are similar results across separate test administrations, and the study, supported by the National Institute on Alcohol Abuse and Alcoholism (NIAAA), shows that the AUDIT‐C can be used reliably in adult primary care patients. The study, led by Claire B. Simon, M.D., of the University of Washington in Seattle, used electronic health record (EHR) data from Kaiser Permanente. For the study, more than 18,000 adult primary care patients completed two AUDIT‐C screens at 1 to 21 days apart as part of routine care in 2021. Screen results were reliable whether completed in person or online through patient portals. However, reliability was higher when the patient completed both screens using online patient portals, compared to completing both screens in the clinic or one in the clinic and one online. Therefore, completing two screens may be a better option than just doing one. The study, High test–retest reliability of the Alcohol Use Disorders Identification Test–Consumption (AUDIT‐C) questionnaire completed by primary care patients in routine care, is published in the February 2024 issue of Alcohol, Clinical and Experimental Research. The researchers also found that reliability was lower for American Indian/Alaska Native (AI/AN) patients and multiracial patients.

Comparative analysis of semaglutide induced adverse reactions: Insights from FAERS database and social media reviews with a focus on oral vs subcutaneous administration.

Compared to alternative weight-loss strategies and medications, semaglutide stands out for its convenience and efficacy, resulting in a significant increase in prescriptions and raising public safety concerns. Furthermore, the safety profiles of its oral and subcutaneous formulations require further examination. Our goal is to investigate the potential safety risks associated with semaglutide by analyzing data from the FAERS database and social media. Additionally, we aim to compare the adverse drug reaction (ADR) signals between the oral and subcutaneous administration routes of semaglutide. We collected semaglutide-related reports from the FAERS database spanning Q1 2018 to Q2 2023, and patient reviews on WebMD and AskaPatient up to 20 July 2023. Following data extraction and cleansing, we conducted descriptive analyses of demographic characteristics. Subsequently, we calculated adverse drug reaction (ADR) signals using the reporting odds ratio (ROR). We identified 19,289 and 422 semaglutide-related adverse drug events (ADEs) reported in the FAERS database and online patient reviews, respectively. Gastrointestinal disorders emerged as the most commonly reported System Organ Class (SOC) in both datasets. Predominant Preferred Terms (PTs) included nausea, vomiting, and diarrhea. Serious outcomes constituted 3.07% and 2.25% of all cases for oral and subcutaneous semaglutide, respectively. At the SOC level, gastrointestinal disorders accounted for 30.19% of total ADEs in oral semaglutide, slightly surpassing the 27.76% in subcutaneous semaglutide. The median onset for gastrointestinal PTs was 4 days in both oral (Q1: 1, Q3: 32) and subcutaneous (Q1: 1, Q3: 35) formulations. Noteworthy, new serious adverse event (AE) signals were identified, including hemorrhagic diarrhea (ROR: 3.69), hepatic pain (ROR: 4.20), abnormal hormone levels (ROR: 6.51), and pancreatic failure (ROR: 36.34) in subcutaneous semaglutide, and Dupuytren's contracture (ROR: 46.85) in oral semaglutide. Our study delineates the safety profile of semaglutide using data from the FAERS database and social media. And identified novel ADR signals specific to oral and subcutaneous forms of semaglutide.

Differential utilization of the online patient portal for completion of health-related social needs screening during routine gynecologic cancer care.

Telehealth technologies offer efficient ways to deliver health-related social needs (HRSN) screening in cancer care, but these methods may not reach all populations. The authors examined patient characteristics associated with using an online patient portal (OPP) to complete HRSN screening as part of gynecologic cancer care. From June 2021 to June 2023, patients in a gynecologic oncology clinic completed validated HRSN screening questions either (1) using the OPP (independently before the visit) or (2) in person (verbally administered by clinic staff). The authors examined the prevalence of HRSN according to activated OPP status and, in a restricted subgroup, used stepwise multivariate Poisson regression to identify associations between patient and visit characteristics and using the OPP. Of 1616 patients, 87.4% (n=1413) had an activated OPP. Patients with inactive OPPs (vs. activated OPPs) more frequently reported two or more needs (10% vs 5%; p<.01). Of 986 patients in the restricted cohort, 52% used the OPP to complete screening. The final multivariable model indicated that patients were less likely to use the OPP if they were Black (vs. White; adjusted relative risk [aRR], 0.70; 95% confidence interval [CI], 0.59-0.83); not employed (vs. employed; aRR, 0.81; 95% CI, 0.68-0.97), or had low measures of OPP engagement (aRR, 0.80; 95% CI, 0.68-0.92). New versus established patients were 21% more likely to use the OPP (aRR, 1.21; 95% CI, 1.06-1.38). Differential use of the OPP suggested that over-reliance on digital technologies could limit the ability to reach those populations that have social factors already associated with cancer outcome disparities. Cancer centers should consider using multiple delivery methods for HRSN screening to maximize reach to all populations.

Online Patient Resources for Birdshot Uveitis: How Readable are These Resources?

ABSTRACT Purpose Birdshot uveitis is a rare ophthalmic condition that can be challenging to control. The readability of online patient resources may impact the management of patients with birdshot. Thus, we examined the readability of online patient resources and identified differences in readability among sources and sections of websites. Methods We queried 3 search engines (Google, Yahoo, Bing) for search results based on a series of terms related to birdshot uveitis. One hundred and twenty results were retrieved and 17 articles were assessed for readability analysis using validated readability and grade-level metrics. Articles were scored based on their entire textual content and, when feasible, also based on sections (e.g. background, diagnosis, treatment). Statistical analyses were conducted using ANOVA and Tukey’s honestly significant difference. Results The websites analyzed were from hospitals and academic centers (5), private practices (3), patient advocacy organizations (4), and other non-profits (5). On average, online patient resources are too difficult to read according to readability scores and grade levels ranging from late high school to college graduate. Articles written by non-profits other than advocacy organizations had an average of 6.5% more complex words than articles written by hospitals and academic centers (p < 0.05). Multiple metrics revealed that the treatment sections were less readable than the causes and symptoms sections. Conclusion The readability of online patient resources for birdshot far exceeds reading levels recommended by the AMA, NIH, and patient safety organizations. Efforts should be made to improve the readability of patient education materials and patient understanding of their disease.

Ontology extension by online clustering with large language model agents.

An ontology is a structured framework that categorizes entities, concepts, and relationships within a domain to facilitate shared understanding, and it is important in computational linguistics and knowledge representation. In this paper, we propose a novel framework to automatically extend an existing ontology from streaming data in a zero-shot manner. Specifically, the zero-shot ontology extension framework uses online and hierarchical clustering to integrate new knowledge into existing ontologies without substantial annotated data or domain-specific expertise. Focusing on the medical field, this approach leverages Large Language Models (LLMs) for two key tasks: Symptom Typing and Symptom Taxonomy among breast and bladder cancer survivors. Symptom Typing involves identifying and classifying medical symptoms from unstructured online patient forum data, while Symptom Taxonomy organizes and integrates these symptoms into an existing ontology. The combined use of online and hierarchical clustering enables real-time and structured categorization and integration of symptoms. The dual-phase model employs multiple LLMs to ensure accurate classification and seamless integration of new symptoms with minimal human oversight. The paper details the framework's development, experiments, quantitative analyses, and data visualizations, demonstrating its effectiveness in enhancing medical ontologies and advancing knowledge-based systems in healthcare.

Access to a Patient Portal is Associated with a Higher Rate of Diabetic Eye Examination Completion

ABSTRACT Purpose To evaluate factors associated with a higher completion rate of annual diabetic eye examinations. Methods This retrospective, cross-sectional study included patients diagnosed with diabetes mellitus (DM) who were aged 18–75 years and receiving primary care in a suburban integrated delivery network (IDN). Patient demographic, sociomedical, biometric characteristics, and Healthcare Effectiveness Data and Information Set (HEDIS) measures within the Comprehensive Diabetes Care bundle were extracted from the electronic health record (EHR) and analyzed by using multivariate logistic regression to assess factors associated with completion of an eye exam (retinal) performed during the study year. Results Among 19,901 primary care patients with DM, 35.15% completed an eye examination in 2021. After adjusting for demographic and biometric characteristics, the two factors most closely associated with completing a diabetic eye examination were having had a primary care office visit (adjusted odds ratio [aOR], 3.525; 95% confidence interval [CI], 3.210–3.871, p < 0.001) or an eye examination in the prior year (aOR, 2.948; 95% CI, 2.752–3.158, p < 0.001). The next most important factor to emerge was having an activated, online patient portal (PP; aOR, 1.737; 95% CI, 1.592–1.896; p < 0.001) or PP recently activated within the prior year (aOR, 1.387; 95% CI, 1.220–1.576, p < 0.001). Conclusions Surveillance for diabetic retinopathy relies on annual diabetic eye examinations yet adherence to that standard remains unacceptably low. Our study suggests that engagement of patients through an online PP could help increase this rate.

In Their Own Words: Patient Narratives of Breast Cancer Surgery and Reconstruction.

Breast cancer's global burden prompts a comprehensive understanding of patient experiences surrounding surgical interventions. Social media platforms serve as a new potential avenue for analysis, reflecting patients' coping mechanisms and support-seeking behaviors. This study's objective is to further understand patient experiences regarding breast cancer interventions via social media to improve physician-patient dialogue. A cross-sectional study was conducted of Instagram and TikTok posts surrounding breast cancer surgeries using procedure-related hashtags. Content was categorized to prevalent themes related to Breast-Q foci and was subsequently analyzed. Data from 1,028 individuals were analyzed. Posts encompassed double mastectomy (39%), single mastectomy (22%), and combineddeep inferior epigastric perforator flap, latissimus dorsi flap, and transverse rectus abdominis muscle flapreconstruction (39%). Frequently identified themes included 'Raising Awareness' (86.87%), 'Spreading Positivity' (53.11%), 'Resiliency' (31.03%), 'Online Support' (24.61%), 'Update of Appearance' (20.82%), 'Recovery/Rehab' (19.94%), and 'Scientific Explanation' (19.75%). Instagram posts more likely encompassed positivity (p < 0.001), resiliency (p = 0.001), and mental health (p = 0.011). TikTok posts more likely (p = 0.001) discussed scientific explanations, decision-making, and symptoms (p < 0.001). Preoperative posts more likely (p < 0.001) surrounded scientific explanations, decision-making, and fear. Postoperative posts more likely (p < 0.001) highlighted appearance updates, recovery/rehab, and positivity (p = 0.012). Experiences with mastectomy and reconstruction differed: recovery/rehab (p < 0.001), scientific explanations (p = 0.015), treatment process (p = 0.003), range of motion (p < 0.001), self-esteem (p = 0.017), and wound management (p = 0.008). Concerns of patients online reflect Breast-Q measures. Understanding these nuanced patient discussions can provide novel insights for providers. Tailoring interactions through these insights may facilitate enhanced support, discussions, and experiences throughout the treatment journey. Main Points Social media offers a unique insight into personal patient experiences Online breast surgery patient perspectives reflect Breast-Q measures Outlooks from shared online posts may facilitate physician-patient dialogue LEVEL OF EVIDENCE V: This journal requires that authors assign a level of evidence to each article. For a full description of these Evidence-Based Medicine ratings, please refer to the Table of Contents or the online Instructions to Authors www.springer.com/00266 .

Evaluating the readability of online patient information for cholangiocarcinoma.

264 Background: The digital age has facilitated the dissemination of free comprehensive information regarding the diagnosis and treatment of various cancers. Especially for rarer cancers, such as cholangiocarcinoma, patients heavily rely on online patient information (OPI) as a primary source of information. However, the usefulness of these websites is dependent on the readability of the information. The National Institute of Health (NIH) recommends OPI have a readability level of grade 8 or lower. We sought to assess the readability of OPI for cholangiocarcinoma. Methods: We utilized Google to identify the top ten websites utilizing the search query "cholangiocarcinoma". The readability score of each website was defined as the median of ten popular standardized readability scales - Flesch–Kincaid, Gunning Fog, Coleman–Liau, Simple Measure of Gobbledygook, Automated Readability Index, FORCAST, Raygor, Fry Graph, and New Dale Chall. These readability scales were obtained using www.readable.com. Group comparisons of readability score were performed for affiliation (i.e., academic, non-profit, or government) and website content (i.e., treatment modalities, complications, clinical trials, supportive care, and survivorship). Statistical analysis was done in RStudio. Pairwise comparisons were performed using the Wilcoxon rank sum test. Results: A total of 10 websites were analyzed with 4/10 (40%) affiliated with academic institutions, 3/10 (30%) affiliated with non-profit organization, and 3/10 (30%) affiliated with government websites. The median readability score for all 10 websites was 9.95 (IQR 9.15-10.75). The majority of the websites (9/10, 90%) websites had readability scores that did not satisfy the NIH recommendation for readability. Readability scores did not differ significantly between academic, government, and nonprofit websites (p=0.68). Readability also did not differ by website content. The correlation between word count and readability score was not statistically significant (r = 0.03, p = 0.92). Conclusions: We performed a first of its kind analysis to assess the readability of OPI for cholangiocarcinoma. The median readability of OPI for cholangiocarcinoma was at a 10th grade level and the majority of the websites did not satisfy the NIH guideline for readability. Surprisingly, government websites were not simpler to read than their academic and nonprofit counterparts. Our study underscores the need to develop OPI for cholangiocarcinoma that is easily readable for patients and their caregivers. Organizations publishing OPI may use readability scores to ensure their content is accessible for the general population.

Artificial intelligence chatbots as sources of patient education material for cataract surgery: ChatGPT-4 versus Google Bard

ObjectiveTo conduct a head-to-head comparative analysis of cataract surgery patient education material generated by Chat Generative Pre-trained Transformer (ChatGPT-4) and Google Bard.Methods and analysis98 frequently asked questions on cataract surgery...

Assessing quality and reliability of online videos on tachycardia: a YouTube video-based study

BackgroundConsidering the adverse clinical consequences of pathologic tachycardia and the potential anxiety caused by physiological tachycardia in some heathy individuals, it is imperative to disseminate health information related to tachycardia for promotion in early diagnosis and appropriate management. YouTube has been increasingly used to access health care information. The aim of this study is to assess the quality and reliability of English YouTube videos focusing on tachycardia and further delve into strategies to enhance the quality of online health resources.MethodsWe conducted a search using the specific key words “tachycardia” in YouTube online library on December 2, 2023. The first 150 videos, ranked by “relevance”, were initially recorded. After exclusions, a total of 113 videos were included. All videos were extracted for characteristics and categorized based on different topics, sources or contents. Two independent raters assessed the videos using Journal of American Medical Association (JAMA) benchmark criteria, Modified DISCERN (mDISCERN) tool, Global Quality Scale (GQS) and Tachycardia-Specific Scale (TSS), followed by statistical analyses. All continuous data in the study were presented as median (interquartile range).ResultsThe videos had a median JAMA score of 2.00 (1.00), mDISCERN of 3.00 (1.00), GQS of 2.00 (1.00), and TSS of 6.00 (4.50). There were significant differences in JAMA (P < 0.001), mDISCERN (P = 0.004), GQS (P = 0.001) and TSS (P < 0.001) scores among different sources. mDISCERN (P = 0.002), GQS (P < 0.001) and TSS (P = 0.030) scores significantly differed among various contents. No significant differences were observed in any of the scores among video topics. Spearman correlation analysis revealed that VPI exhibited significant correlations with quality and reliability. Multiple linear regression analysis suggested that longer video duration, sources of academics and healthcare professionals were independent predictors of higher reliability and quality, while content of ECG-specific information was an independent predictor of lower quality.ConclusionsThe reliability and educational quality of current tachycardia-related videos on YouTube are low. Longer video duration, sources of academics and healthcare professionals were closely associated with higher video reliability and quality. Improving the quality of internet medical information and optimizing online patient education necessitates collaborative efforts.

Social Media as a Source of Information for the Detection of Adverse Drug Reactions in Post-Marketing Surveillance: A Review

INTRODUCTION. With the development of the Internet and the increasing availability of social networks and fora, patients have received an opportunity to share their medication experiences online. According to the guidelines on Good Pharmacovigilance Practices, social media can be considered an important additional source of patient-derived information in post-marketing surveillance, but the effectiveness of their use in detecting adverse drug reactions (ADRs) is still being investigated.AIM. This study aimed to analyse the results of relevant original studies and assess the potential of using social networks and online patient fora as a source of information on ADRs associated with the use of medicinal products.DISCUSSION. Published studies indicate that posts on social networks and patient fora describe both minor and serious ADRs, including new ADRs. The relevance of social media as a source of information about the safety of a medicinal product varies depending on several factors, including the medicinal product class and time on the market, as well as the platform demographics. Young users (18–44 years) are interested in online discussions about medicinal products for mental and reproductive system disorders. Users aged 45–64 years tend to discuss the use of medicinal products for chronic pain (including muscle pain), menopause, and gastritis. Discussions among users over 65 years old predominantly focus on medicinal products for diabetes, heart conditions, and muscle pain. People are much more likely to describe ADRs associated with the use of medicinal products for orphan diseases and cancer on fora for patients than on social networks in general, and vice versa for ADRs associated with the use of medicinal products for mental disorders. In addition, social media may be of interest as a source of information about cases of overdose, misuse and off-label use of medicinal products, and use of medicinal products during pregnancy and lactation.CONCLUSIONS. Social media can be a source of valuable information about the safety of medicinal products and the impact of ADRs on the quality of patients’ lives. Marketing authorisation holders can obtain new information about the safety of medicinal products by extending their safety monitoring strategies to include social media. Nevertheless, since the relevance of a particular social network or patient forum for the detection of ADR cases varies considerably, a preliminary assessment is necessary to ascertain the presence of information on the medicinal product of interest.

Abstract B025: Assessing the content and quality of online patient education material on clinical trials from NCI-designated comprehensive cancer centers

Abstract Background: Online patient educational material on cancer clinical trials is available on NCI- designated comprehensive cancer center websites and official YouTube channels. Online health information is an important resource for patients seeking to learn more about treatment options. Objective: Examine the quality and content themes in online patient educational material (PEM) related to cancer clinical trials published by comprehensive cancer centers. Methods: A random sample of comprehensive cancer centers (21) was chosen to represent the national network of cancer centers. Each website was searched for webpages containing patient-oriented clinical trial information. Official YouTube channels were also searched for relevant video material. Each webpage and video (N=196) were assessed for quality and content themes. Quality was measured using an abbreviated Patient Education Materials Assessment Tool which scores understandability and actionability of text and audio-visual materials, and content themes were assessed by the use of a content characteristic codebook. Results: Common content themes in the sample (N=196) of online PEM from comprehensive cancer centers were defines purpose of trials, physician speaker, animated or illustrated elements, and defines phases of trials. Online PEM had an average score of 83 for understandability and 26 for actionability, an area for improvement. Only 10% of materials reviewed scored high for understandability (&amp;gt;90) and for actionability (&amp;gt;70). Online webpages that mixed text and video scored highest on the quality assessment. Video-only content scored lowest on the quality assessment. Only a small percentage of PEM included FAQs (10%), instructions on how to find a trial (16%), mentioned consent (14%) or costs associated with trials (12%). Mentions or depictions of minority populations were not commonly observed in the material (11%). Conclusions: Online PEM published by comprehensive cancer centers is an important and easily accessible resource for patients looking to learn more about clinical trials. Cancer centers should add various audio-visual formats and interactive tools to their webpages to increase the quality of the clinical trial resources. Including representation of historically underserved populations and adding actionable advice for patients has the potential to engage patients’ interest and increase enrollment in cancer clinical trials. Citation Format: Trista Beard, Diana Morales, Fatimata Sanogo, Chanita Hughes Halbert. Assessing the content and quality of online patient education material on clinical trials from NCI-designated comprehensive cancer centers [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B025.

Turning to digital: Examining the relationship between offline healthcare barriers and U.S. older adults’ emotional well-being via online patient–provider communication and perceived quality of care (2017–2020)

PurposeTo examine the association between offline healthcare barriers and emotional well-being and assess the mediation roles of online patient–provider communication (OPPC) and perceived quality of care. This study also investigates the trends in offline healthcare barriers, OPPC, perceived quality of care, and emotional well-being over four years among the old population in the U.S. MethodsData from the Health Information National Trends Survey (HINTS) 5 Cycles 1, 2, and 4 were used. Mediation analysis and comparison analysis were employed. ResultsThe results indicated an increment in OPPC and a decline in patient’s perceived quality of care between 2017 and 2020. Across the three years, offline healthcare barriers were consistently negatively associated with emotional well-being, and perceived quality of care remained a mediator in such a relationship. Moreover, the serial mediating roles of OPPC and perceived quality of care between offline healthcare barriers and emotional well-being turned from statistically non-significant (2017) to significant (2018, 2020). ConclusionOur results witness the growing adoption of OPPC among older adults and the evolution of OPPC as a complementary communication modality. The findings can support interventions to augment OPPC utilization and enhance the perception of quality care of older adults, contributing to their increased emotional well-being.

Assessing the quality and readability of online patient information: ENT UK patient information e-leaflets vs responses by a Generative Artificial Intelligence.

The evolution of artificial intelligence has introduced new ways to disseminate health information, including natural language processing models like ChatGPT. However, the quality and readability of such digitally-generated information remains understudied. This study is the first to compare the quality and readability of digitally-generated health information against leaflets produced by professionals. Patient information leaflets for five ENT UK leaflets and their corresponding ChatGPT responses were extracted from the Internet. Assessors with various degree of medical knowledge evaluated the content using the Ensuring Quality Information for Patients (EQIP) tool and readability tools including the Flesch-Kincaid Grade Level (FKGL). Statistical analysis was performed to identify differences between leaflets, assessors, and sources of information. ENT UK leaflets were of moderate quality, scoring a median EQIP of 23. Statistically significant differences in overall EQIP score were identified between ENT UK leaflets but ChatGPT responses were of uniform quality. Non-specialist doctors rated the highest EQIP scores while medical students scored the lowest. The mean readability of ENT UK leaflets was higher than ChatGPT responses. The information metrics of ENT UK leaflets were moderate and varied between topics. Equivalent ChatGPT information provided comparable content quality, but with reduced readability. ChatGPT patient information and professionally-produced leaflets had comparable content, but LLM content were required a higher reading age. With the increasing use of online health resources, this study highlights the need for a balanced approach that considers optimises both the quality and readability of patient education materials.

Fecal urgency and incontinence in inflammatory bowel disease perceived by physician and patient: Results from the Swiss fecal urgency survey.

Although increasingly appreciated, little is known about the prevalence of fecal urgency, fecal incontinence and differences between patients' and physicians' perception in inflammatory bowel disease (IBD). We performed an online patient and physician survey to evaluate the assessment, prevalence and impact of fecal urgency and incontinence in IBD. A total of 593 patients (44.0% ulcerative colitis (UC), 53.5% Crohn's disease (CD), 2.2% indeterminate colitis, 2 not specified) completed the survey (65.8% females, mean age 47.1years). Fecal urgency was often reported (UC: 98.5%, CD: 96.2%) and was prevalent even during remission (UC: 65.9%, CD: 68.5%). Fecal urgency considerably impacted daily activities (visual analog scale [VAS] 5, IQR 3-8). Yet, 22.8% of patients have never discussed fecal urgency with their physicians. Fecal incontinence was experienced by 44.7% of patients and 7.9% on a weekly basis. Diapers/pads were required at least once a month in 20.4% of patients. However, 29.7% of patients never talked with their physician about fecal incontinence. UC was an independent predictor for the presence of moderate-severe fecal urgency (OR 1.65, 95% CI 1.13-2.41) and fecal incontinence (OR 1.77, 95% CI 1.22-2.59). All physicians claimed to regularly inquire about fecal urgency and incontinence. However, the impact of these symptoms on daily activities was overestimated compared with the patient feedback (median VAS 8 vs. 5, p=0.0113, and 9 vs. 5, p=0.0187). Fecal urgency and incontinence are burdensome symptoms in IBD, with a similar prevalence in UC and CD. A mismatch was found between the physician and patient perception. These symptoms should be addressed during outpatient visits.