Attitudes and experiences of cancer patients toward the provision of audio recordings of their own medical encounter: a cross-sectional online survey.

Background: The provision of audio recordings of their own medical encounters to patients, termed consultation recordings, has demonstrated promising benefits, particularly in addressing information needs of cancer patients. While this intervention has been explored globally, there is limited research specific to Germany. This study investigates the attitudes and experiences of cancer patients in Germany toward consultation recordings. Methods: We conducted a nationwide cross-sectional quantitative online survey, informed by semi-structured interviews with cancer patients. The survey assessed participants' attitudes, experiences and desire for consultation recordings in the future. The data was analyzed using descriptive statistics and subgroup analyses. Results: A total of 287 adult cancer patients participated. An overwhelming majority (92%) expressed a (very) positive attitude. Overall, participants strongly endorsed the anticipated benefits of the intervention, such as improved recall and enhanced understanding. Some participants expressed concerns that physicians might feel pressured and could become more reserved in their interactions with the use of such recordings. While a small proportion (5%) had prior experience with audio recording medical encounters, the majority (92%) expressed interest in having consultation recordings in the future. Discussion: We observed positive attitudes of cancer patients in Germany toward consultation recordings, paralleling international research findings. Despite limited experiences, participants acknowledged the potential benefits of the intervention, particularly related to recalling and comprehending information from medical encounters. Our findings suggest that the potential of the intervention is currently underutilized in German cancer care. While acknowledging the possibility of a positive bias in our results, we conclude that this study represents an initial exploration of the intervention's potential within the German cancer care context, laying the groundwork for its further evaluation.

Bruxism treatment on Youtube: evaluating reliability and information accuracy.

BACKGROUND: The aim of this study was to evaluate the content and quality of videos about bruxism treatments on YouTube, a platform frequently used by patients today to obtain information. METHODS: A YouTube search was performed using the keywords "bruxism treatment" and "teeth grinding treatment". "The sort by relevance" filter was used for both search terms and the first 150 videos were saved. A total of 139 videos that met the study criteria were included in the study. Videos were classified as poor, moderate or excellent based on a usefulness score that evaluated content quality. The modified DISCERN tool was also used to evaluate video quality. Additionally, videos were categorized according to the upload source, target audience and video type. The types of treatments mentioned in the videos and the demographic data of the videos were recorded. RESULTS: According to the usefulness score, 59% of the videos were poor-quality, 36.7% were moderate-quality and 4.3% were excellent-quality. Moderate-quality videos had a higher interaction index than excellent-quality videos (p = 0.039). The video duration of excellent-quality videos was longer than that of moderate and poor-quality videos (p = 0.024, p = 0.002). Videos with poor-quality content were found to have significantly lower DISCERN scores than videos with moderate (p < 0.001) and excellent-quality content (p = 0.008). Additionally, there was a significantly positive and moderate (r = 0.446) relationship between DISCERN scores and content usefulness scores (p < 0.001). There was only a weak positive correlation between DISCERN scores and video length (r = 0.359; p < 0.001). The videos uploaded by physiotherapists had significantly higher views per day and viewing rate than videos uploaded by medical doctors (p = 0.037), university-hospital-institute (p = 0.024) and dentists (p = 0.006). The videos uploaded by physiotherapists had notably higher number of likes and number of comments than videos uploaded by medical doctors (p = 0.023; p = 0.009, respectively), university-hospital-institute (p = 0.003; p = 0.008, respectively) and dentists (p = 0.002; p = 0.002, respectively). CONCLUSIONS: Although the majority of videos on YouTube about bruxism treatments are produced by professionals, most of the videos contain limited information, which may lead patients to debate treatment methods. Health professionals should warn patients against this potentially misleading content and direct them to reliable sources.

Analyzing online forums to identify information needs and knowledge gaps in patients with left ventricular assist devices: a qualitative study.

AIM: To explore the knowledge and unmet informational needs of candidates for left ventricular assist devices (LVADs), as well as of patients, caregivers, and family members, by analyzing social media data from the MyLVAD.com website. METHODS AND RESULTS: A qualitative content analysis method was employed, systematically examining and categorizing forum posts and comments published on the MyLVAD.com website from March 2015 to February 2023. The data was collected using an automated script to retrieve threads from MyLVAD.com, focusing on genuine questions reflecting information and knowledge gaps. The study received approval from an ethics committee. The research team developed and continuously updated categorization matrices to organize information into categories and subcategories systematically. From 856 posts and comments analyzed, 435 contained questions representing informational needs, of which six main categories were identified: clothing, complications/adverse effects, LVAD pros and cons, self-care, therapy, and recent LVAD implantation. The self-care category, which includes managing the driveline site and understanding equipment functionality, was the most prominent, reflecting nearly half of the questions. Other significant areas of inquiry included complications/adverse effects and the pros and cons of LVAD. CONCLUSION: The analysis of social media data from MyLVAD.com reveals significant unmet informational needs among LVAD candidates, patients, and their support networks. Unlike traditional data, this social media-based research provides an unbiased view of patient conversations, offering valuable insights into their real-world concerns and knowledge gaps. The findings underscore the importance of tailored educational resources to address these unmet needs, potentially enhancing LVAD patient care.

Assisted reproductive technology (ART) patient information-seeking behavior: a qualitative study.

BACKGROUND: Approximately 13% of women in the United States of reproductive age seek infertility services. Assisted reproductive technology (ART), including in vitro fertilization, is used to help patients achieve pregnancy. Many people are not familiar with these treatments prior to becoming patients and possess knowledge gaps about care. METHODS: This study employed qualitative methods to investigate how patients interact with information sources during care. Patients who underwent ART including embryo transfer between January 2017 and April 2022 at a large urban healthcare center were eligible. Semi-structured, in-depth interviews were conducted between August and October 2022. Fifteen females with an average age of 39 years participated. Reflexive thematic analysis was performed. RESULTS: Two main themes emerged. Participants (1) utilized clinic-provided information and then turned to outside sources to fill knowledge gaps; (2) struggled to learn about costs, insurance, and mental health resources to support care. Participants preferred clinic-provided resources and then utilized academic sources, the internet, and social media when they had unfulfilled information needs. Knowledge gaps related to cost, insurance, and mental health support were reported. CONCLUSION: ART clinics can consider providing more information about cost, insurance, and mental health support to patients. TRIAL REGISTRATION: The Massachusetts General Hospital Institutional Review Board approved this study (#2022P000474) and informed consent was obtained from each participant.

Quality and readability of online information and materials on post-surgery breast seroma.

Aims/Background Seroma formation is the most common complication following breast surgery. However, there is little evidence on the readability of online patient education materials on this issue. This study aimed to assess the accessibility and readability of the relevant online information. Methods This systematic review of the literature identified 37 relevant websites for further analysis. The readability of each online article was assessed through using a range of readability formulae. Results The average Flesch-Reading Ease score for all patient education materials was 53.9 (± 21.9) and the average Flesch-Kincaid reading grade level was 7.32 (± 3.1), suggesting they were 'fairly difficult' to read and is higher than the recommended reading level. Conclusion Online patient education materials regarding post-surgery breast seroma are at a higher-than-recommended reading grade level for the public. Improvement would allow all patients, regardless of literacy level, to access such resources to aid decision-making around undergoing breast surgery.

The Use of Podcasts as Patient Preparation for Hospital Visits-An Interview Study Exploring Patients' Experiences.

INTRODUCTION: Podcasts have emerged as a promising tool in patient preparation for hospital visits. However, the nuanced experiences of patients who engage with this medium remain underexplored. OBJECTIVES: This study explored patients' experiences of receiving information by way of podcasts prior to their hospital visits. METHODS: Semi-structured interviews were conducted with patients with suspected chronic obstructive pulmonary disease (COPD), lung cancer, or sleep apnea. The method of data analysis chosen was thematic analysis. RESULTS: Based on data from 24 interviews, five key themes were identified: technical challenges in utilization of podcasts; individual preferences for information prior to hospital visits; building trust and reducing anxiety through podcasts; the role of podcasts as an accessible and convenient source of information; and enhancement of engagement and empowerment through podcasts. Additionally, the study highlighted the critical importance of tailoring podcasts' content to individual preferences to optimize the delivery of healthcare information. CONCLUSIONS: Podcasts can serve as a meaningful supplement to traditional information sources for patients. However, it is important to recognize that not all patients may be able to engage with this medium effectively due to technical challenges or personal preferences.

Retention strategies are routinely communicated to potential trial participants but often differ from what was planned in the trial protocol: an analysis of adult participant information leaflets and their corresponding protocols.

BACKGROUND: Retaining participants in randomised controlled trials (RCTs) is challenging and trial teams are often required to use strategies to ensure retention or improve it. Other than monetary incentives, there is no requirement to disclose the use of retention strategies to the participant. Additionally, not all retention strategies are developed at the planning stage, i.e. post-funding during protocol development, but some protocols include strategies for participant retention as retention is considered and planned for early in the trial planning stage. It is yet unknown if these plans are communicated in the corresponding participant information leaflets (PILs). The purpose of our study was to determine if PILs communicate plans to promote participant retention and, if so, are these outlined in the corresponding trial protocol. METHODS: Ninety-two adult PILs and their 90 corresponding protocols from Clinical Trial Units (CTUs) in the UK were analysed. Directed (deductive) content analysis was used to analyse the participant retention text from the PILs. Data were presented using a narrative summary and frequencies where appropriate. RESULTS: Plans to promote participant retention were communicated in 81.5% (n = 75/92) of PILs. Fifty-seven percent (n = 43/75) of PILs communicated plans to use "combined strategies" to promote participant retention. The most common individual retention strategy was telling the participants that data collection for the trial would be scheduled during routine care visits (16%; n = 12/75 PILs). The importance of retention and the impact that missing or deleted data (deleting data collected prior to withdrawal) has on the ability to answer the research question were explained in 6.5% (n = 6/92) and 5.4% (n = 5/92) of PILs respectively. Out of the 59 PILs and 58 matching protocols that both communicated plans to use strategies to promote participant retention, 18.6% (n = 11/59) communicated the same information, the remaining 81.4% (n = 48/59) of PILs either only partially communicated (45.8%; n = 27/59) the same information or did not communicate the same information (35.6%; n = 21/59) as the protocol with regard to the retention strategy(ies). CONCLUSION: Retention strategies are frequently communicated to potential trial participants in PILs; however, the information provided often differs from the content in the corresponding protocol. Participant retention considerations are best done at the planning stage of the trial and we encourage trial teams to be consistent in the communication of these strategies in both the protocol and PIL.

Assessment of the Quality, Accountability, and Readability of Online Patient Education Materials for Optic Neuritis.

Most cases of optic neuritis (ON) occur in women and in patients between the ages of 15 and 45 years, which represents a key demographic of individuals who seek health information using the internet. As clinical providers strive to ensure patients have accessible information to understand their condition, assessing the standard of online resources is essential. To assess the quality, content, accountability, and readability of online information for optic neuritis. This cross-sectional study analyzed 11 freely available medical sites with information on optic neuritis and used PubMed as a gold standard for comparison. Twelve questions were composed to include the information most relevant to patients, and each website was independently examined by four neuro-ophthalmologists. Readability was analyzed using an online readability tool. Journal of the American Medical Association (JAMA) benchmarks, four criteria designed to assess the quality of health information further were used to evaluate the accountability of each website. Freely available online information. On average, websites scored 27.98 (SD ± 9.93, 95% CI 24.96-31.00) of 48 potential points (58.3%) for the twelve questions. There were significant differences in the comprehensiveness and accuracy of content across websites (p < .001). The mean reading grade level of websites was 11.90 (SD ± 2.52, 95% CI 8.83-15.25). Zero websites achieved all four JAMA benchmarks. Interobserver reliability was robust between three of four neuro-ophthalmologist (NO) reviewers (ρ = 0.77 between NO3 and NO2, ρ = 0.91 between NO3 and NO1, ρ = 0.74 between NO2 and NO1; all p < .05). The quality of freely available online information detailing optic neuritis varies by source, with significant room for improvement. The material presented is difficult to interpret and exceeds the recommended reading level for health information. Most websites reviewed did not provide comprehensive information regarding non-therapeutic aspects of the disease. Ophthalmology organizations should be encouraged to create content that is more accessible to the general public.

Evaluating the web as a source of information for patients with chest wall deformities: insights into engagement and disparities.

BACKGROUND: Recent data highlight the internet's pivotal role as the primary information source for patients. In this study, we emulate a patient's/caregiver's quest for online information concerning chest deformities and assess the quality of available information. METHODS: We conducted an internet search using combination of the terms "pectus excavatum," "pectus excavatum surgery," "funnel chest," "pectus excavatum repair" and identified the first 100 relevant websites from the three most popular search engines: Google, Yahoo, and Bing. These websites were evaluated using the modified Ensuring Quality Information for Patients (EQIP) instrument. RESULTS: Of the 300 websites generated, 140 (46.7%) were included in our evaluation after elimination of duplicates, non-English websites, and those targeting medical professionals. The EQIP scores in the final sample ranged from 8 to 32/36, with a median score of 22. Most of the evaluated websites (32.8%) originated from hospitals, yet none met all 36 EQIP criteria. DISCUSSION: None of the evaluated websites pertaining to pectus excavatum achieved a flawless "content quality" score. The diverse array of websites potentially complicates patients' efforts to navigate toward high-quality resources. Barriers in accessing high-quality online patient information may contribute to disparities in referral, patient engagement, treatment satisfaction, and overall quality of life. LEVEL OF EVIDENCE: IV.

YouTube as a Source of Patient Information on External Cephalic Version: Cross-Sectional Study.

BACKGROUND: With the global increase of cesarean deliveries, breech presentation is the third indication for elective cesarean delivery. Implementation of external cephalic version (ECV), in which the position of the baby is manipulated externally to prevent breech presentation at term, remains suboptimal. Increasing knowledge for caretakers and patients is beneficial in the uptake of ECV implementation. In recent decades, the internet has become the most important source of information for both patients and health care professionals. However, the use and availability of the internet also bring about concerns since the information is often not regulated or reviewed. Information needs to be understandable, correct, and easily obtainable for the patient. Owing to its global reach, YouTube has great potential to both hinder and support spreading medical information and can therefore be used as a tool for shared decision-making. OBJECTIVE: The objective of this study was to investigate the available information on YouTube about ECV and assess the quality and usefulness of the information in the videos. METHODS: A YouTube search was performed with five search terms and the first 35 results were selected for analysis. A quality assessment scale was developed to quantify the accuracy of medical information of each video. The main outcome measure was the usefulness score, dividing the videos into useful, slightly useful, and not useful categories. The source of upload was divided into five subcategories and two broad categories of medical or nonmedical. Secondary outcomes included audience engagement, misinformation, and encouraging or discouraging ECV. RESULTS: Among the 70 videos, only 14% (n=10) were defined as useful. Every useful video was uploaded by educational channels or health care professionals and 80% (8/10) were derived from a medical source. Over half of the not useful videos were uploaded by birth attendants and vloggers. Videos uploaded by birth attendants scored the highest on audience engagement. The presence of misinformation was low across all groups. Two-thirds of the vloggers encouraged ECV to their viewers. CONCLUSIONS: A minor percentage of videos about ECV on YouTube are considered useful. Vloggers often encourage their audience to opt for ECV. Videos with higher audience engagement had a lower usefulness score compared to videos with lower audience engagement. Sources from medically accurate videos should cooperate with sources with high audience engagement to contribute to the uptake of ECV by creating more awareness and a positive attitude of the procedure, thereby lowering the chance for a cesarean delivery due to breech presentation at term.

Development of an Education Material Targeting Patients Undergoing Lower Extremity Amputation due to Severe Limb Ischemia-A Qualitative Study.

INTRODUCTION: Critical limb-threatening ischemia (CLTI) is associated with a high risk of amputation, yet patients undergoing amputation due to CLTI have little knowledge of the amputation process and the rehabilitation that awaits. The aim of the present study was to develop and validate information material for patients undergoing amputation. METHODS: Nine participants were included in the study. Two focus group interviews were performed with seven patients who had undergone lower extremity amputation due to CLTI within the past 2 y. Additionally, two individual interviews were carried out. A semistructured interview guide was used, and the interviews were transcribed verbatim and analysed using qualitative content analysis with a deductive approach. RESULTS: Three themes were identified as essential for the design of the written information: Perspectives on design and formatting, Providing information to enhance participation in care, and Accessibility to information and support. The prototyped information leaflet was perceived as acceptable, useable, relevant, and comprehensible by the participants. CONCLUSIONS: For patients to actively engage in their care, it is vital that their information needs are met and that they are provided with psychosocial support when needed. Written and oral information should be provided by a trusted healthcare professional.

Reliability and readability analysis of ChatGPT-4 and Google Bard as a patient information source for the most commonly applied radionuclide treatments in cancer patients.

PURPOSE: Searching for online health information is a popular approach employed by patients to enhance their knowledge for their diseases. Recently developed AI chatbots are probably the easiest way in this regard. The purpose of the study is to analyze the reliability and readability of AI chatbot responses in terms of the most commonly applied radionuclide treatments in cancer patients. METHODS: Basic patient questions, thirty about RAI, PRRT and TARE treatments and twenty-nine about PSMA-TRT, were asked one by one to GPT-4 and Bard on January 2024. The reliability and readability of the responses were assessed by using DISCERN scale, Flesch Reading Ease(FRE) and Flesch-Kincaid Reading Grade Level(FKRGL). RESULTS: The mean (SD) FKRGL scores for the responses of GPT-4 and Google Bard about RAI, PSMA-TRT, PRRT and TARE treatmens were 14.57 (1.19), 14.65 (1.38), 14.25 (1.10), 14.38 (1.2) and 11.49 (1.59), 12.42 (1.71), 11.35 (1.80), 13.01 (1.97), respectively. In terms of readability the FRKGL scores of the responses of GPT-4 and Google Bard about RAI, PSMA-TRT, PRRT and TARE treatments were above the general public reading grade level. The mean (SD) DISCERN scores assesses by nuclear medicine phsician for the responses of GPT-4 and Bard about RAI, PSMA-TRT, PRRT and TARE treatments were 47.86 (5.09), 48.48 (4.22), 46.76 (4.09), 48.33 (5.15) and 51.50 (5.64), 53.44 (5.42), 53 (6.36), 49.43 (5.32), respectively. Based on mean DISCERN scores, the reliability of the responses of GPT-4 and Google Bard about RAI, PSMA-TRT, PRRT, and TARE treatments ranged from fair to good. The inter-rater reliability correlation coefficient of DISCERN scores assessed by GPT-4, Bard and nuclear medicine physician for the responses of GPT-4 about RAI, PSMA-TRT, PRRT and TARE treatments were 0.512(95% CI 0.296: 0.704), 0.695(95% CI 0.518: 0.829), 0.687(95% CI 0.511: 0.823) and 0.649 (95% CI 0.462: 0.798), respectively (p < 0.01). The inter-rater reliability correlation coefficient of DISCERN scores assessed by GPT-4, Bard and nuclear medicine physician for the responses of Bard about RAI, PSMA-TRT, PRRT and TARE treatments were 0.753(95% CI 0.602: 0.863), 0.812(95% CI 0.686: 0.899), 0.804(95% CI 0.677: 0.894) and 0.671 (95% CI 0.489: 0.812), respectively (p < 0.01). The inter-rater reliability for the responses of Bard and GPT-4 about RAI, PSMA-TRT, PRRT and TARE treatments were moderate to good. Further, consulting to the nuclear medicine physician was rarely emphasized both in GPT-4 and Google Bard and references were included in some responses of Google Bard, but there were no references in GPT-4. CONCLUSION: Although the information provided by AI chatbots may be acceptable in medical terms, it can not be easy to read for the general public, which may prevent it from being understandable. Effective prompts using 'prompt engineering' may refine the responses in a more comprehensible manner. Since radionuclide treatments are specific to nuclear medicine expertise, nuclear medicine physician need to be stated as a consultant in responses in order to guide patients and caregivers to obtain accurate medical advice. Referencing is significant in terms of confidence and satisfaction of patients and caregivers seeking information.

Risks and benefits of sharing patient information on social media: a digital dilemma.

Social media (SoMe) has witnessed remarkable growth and emerged as a dominant method of communication worldwide. Platforms such as Facebook, X (formerly Twitter), LinkedIn, Instagram, TikTok, and YouTube have become important tools of the digital native generation. In the field of medicine, particularly, cardiology, attitudes towards SoMe have shifted, and professionals increasingly utilize it to share scientific findings, network with experts, and enhance teaching and learning. Notably, SoMe is being leveraged for teaching purposes, including the sharing of challenging and intriguing cases. However, sharing patient data, including photos or images, online carries significant implications and risks, potentially compromising individual privacy both online and offline. Privacy and data protection are fundamental rights within European Union treaties, and the General Data Protection Regulation (GDPR) serves as the cornerstone of data protection legislation. The GDPR outlines crucial requirements, such as obtaining 'consent' and implementing 'anonymization', that must be met before sharing sensitive and patient-identifiable information. Additionally, it is vital to consider the patient's perspective and prioritize ethical and social considerations when addressing challenges associated with sharing patient information on SoMe platforms. Given the absence of a peer-review process and clear guidelines, we present an initial approach, a code of conduct, and recommendations for the ethical use of SoMe. In conclusion, this comprehensive review underscores the importance of a balanced approach that ensures patient privacy and upholds ethical standards while harnessing the immense potential of SoMe to advance cardiology practice and facilitate knowledge dissemination.

Thematic coverage and readability of online patient information on cochlear implant care.

INTRODUCTION: The treatment of patients with a cochlear implant (CI) is usually an elective, complex and interdisciplinary process. As an important source of information, patients often access the internet prior to treatment. The quality of internet-based information regarding thematic coverage has not yet been analysed in detail. Therefore, the aim of this study was to analyse the information on CI care available on the internet regarding its thematic coverage and readability. MATERIAL METHODS: Eight search phrases related to CI care were defined as part of the study. A checklist for completeness of thematic coverage was then created for each search phrase. The current German CI clinical practice guideline and the white paper on CI care in Germany were used as a basis. As a further parameter, readability was assessed using Flesch Reading Ease Scores. The search phrases were used for an internet search with Google. The first ten results were then analysed with regard to thematic coverage, readability and the provider of the website. RESULTS: A total of 80 websites were identified, which were set up by 54 different providers (16 providers were found in multiple entries) from eight different provider groups. The average completeness of thematic coverage was 41.6 ± 28.2%. Readability according to the Flesch Reading Ease Score was categorised as "hard to read" on average (34.7 ± 14.2 points, range: 0-72). There was a negative statistically significant correlation between the thematic coverage of content and readability (Spearman's rank correlation: r = - 0.413, p = 0.00014). The completeness of thematic coverage of information on CI care available on the internet was highly heterogeneous and had a significant negative correlation with the readability. This result should be taken into account by both the providers of internet information and by patients when using internet-based information on CI care and help to further improve the quality of web-based information.

When describing harms and benefits to potential trial participants, participant information leaflets are inadequate.

BACKGROUND: Providing informed consent for trials requires providing trial participants with comprehensive information about the trial, including information about potential risks and benefits. It is required by the ethical principle of respecting patient autonomy. Our study examines the variation in the way information about potential trial benefits and harms is shared in participant information leaflets (PILs). METHODS: A total of 214 PILs and informed consent forms from clinical trials units (CTUs) and Clinical Research Facilities (CRFs) in Ireland and the UK were assessed by two authors independently, to check the extent to which they adhered to seven recently developed principles. Discrepancies were resolved by a third. RESULTS: Usage of the seven principles varied widely between PILs regardless of the intended recipient or trial type. None of the PILs used more than four principles, and some (4%) used none. Twenty-seven per cent of PILs presented information about all known potential harms, whereas 45% presented information on all known potential benefits. Some PILs did not provide any potential harms or potential benefits (8%). There was variation in the information contained in adult and children PILs and across disease areas. CONCLUSION: Significant variation exists in how potential trial benefits and harms are described to potential trial participants in PILs in our sample. Usage of the seven principles of good practice will promote consistency, ensure informed ethical decision-making and invoke trust and transparency. In the long term, a standardised PIL template is needed.

Evaluation of the understandability, actionability and reliability of YouTube videos for brain, head, and neck cancer information.

PURPOSE: Online videos accessed via YouTube are a popular method to provide health education. Videos need to be critically evaluated for educational qualities as the information could influence health outcomes. The present study aimed to evaluate the understandability, actionability and reliability of videos available on YouTube regarding brain, head, and neck cancer information. METHODS: A scoping review was conducted with a specific search strategy and inclusion/exclusion criteria based on previous studies. For each video, video characteristics and user engagement activities were recorded. Videos were evaluated using the PEMAT-A/V and modified DISCERN criteria. Spearman's rank correlation, Kruskal-Wallis test and Mann-Whitney U test were used for analysis. RESULTS: Out of 200 retrieved videos, 37 were included and analysed. The median length of the video was 3 min and 33 s. The majority of videos were published by health institutional and private channels (43.2%, n = 16). Health institutional channels received the highest actionability (Md = 37.5, p = 0.049), while private channels resulted in lower views/day (Md = 0.46, p = 0.001) and likes/day (Md = 0.01, p = 0.002). Animated and narrated videos acquired the highest understandability score (Md = 92.31, p < 0.001). Videos with professional transcripts reported higher actionability (Md = 62.5, p = 0.004), reliability (Md = 3.33, p = 0.028), views/day (Md = 29.31, p = 0.026), and likes/day (Md = 0.272, p = 0.023). CONCLUSION: YouTube videos pertaining to brain and head and neck cancer have low understandability, low actionability and moderate reliability. It is beneficial to have a stronger representation of trustworthy and credible organisations for sharing essential health information via YouTube. Including animations and professional video transcripts may improve their overall quality and consumer engagement.

Information-seeking behaviour in patients exploring orthognathic surgery: A qualitative study.

OBJECTIVE: To explore how orthognathic patients seek information during decision-making. DESIGN: Qualitative, cross-sectional study. SETTING: A hospital in Cumbria, UK. PARTICIPANTS: Prospective orthognathic patients. METHODS: Participants were purposively recruited from joint orthognathic clinics after the original consultation. Semi-structured interviews were conducted via remote video call with nine participants aged 18-30 years. Data collection and reflexive thematic analysis occurred in parallel until thematic saturation was achieved. RESULTS: The central finding of this research was that patients were making informed decisions about orthognathic surgery. Four themes were identified to support this central finding including the following: (1) selective engagement with orthognathic information sources; (2) the central role of patient-specific information from professionals and peers; (3) Internet use to supplement standard information resources; and (4) concerns over information found online. The preferred source of information was verbal from the clinical team as it was trusted and person-specific. Past patients were identified as valued sources of information and establishing contact through digital social media networks was found to be a convenient alternative to face-to-face. Online information found was valued but concerns included information overload, problems establishing applicability and concerns over its credibility. CONCLUSION: Orthognathic patients were making informed decisions about their treatment. This study highlights the central role of the patient-clinician interaction in decision-making, especially in providing patient-specific information. Insight into the nuances of information-seeking behaviours will better inform clinical care. Since patients frequently access online information that is decision-relevant, encouraging patients to discuss online searches will support the shared decision-making process and alleviate any concerns with information found. During consultation, explaining the purpose of an information aid rather than expecting patients to read them separately, may further enhance its usefulness in decision-making. This study identified an unmet need for visual aids, such as real-time images of postoperative recovery. These findings can inform the design of future information resources.

A quality assessment of YouTube as an information resource for tonsillectomy.

PURPOSE: Online resources are increasingly being utilised by patients to guide their clinical decision making, as an alternative or supplement to the traditional clinical-patient relationship. YouTube is an online repository of user and community generated videos, which is one of the most popular websites globally. We undertook a study to examine the quality of information presented in YouTube videos related to tonsillectomy. METHODS: We completed a systematic search of YouTube in May 2023 and identified 88 videos for inclusion in our study. Videos were published in the English language, focussing on tonsillectomy and tonsillectomy recovery, and were greater than 2 min in length. We recorded video quality metrics and two authors independently analysed the quality of information using three validated quality assessment tools described in the literature including the modified DISCERN, Global Quality Score, and the JAMA Benchmark Criteria. RESULTS: The overall quality of the information was low with mean quality scores of Modified DISCERN (1.8 ± 1.3), GQS (2.6 ± 1.2), and JAMA Benchmark Criteria (1.6 ± 0.7). Information published by medical sources including medical professionals, healthcare organisations, and medical education channels scored significantly higher compared to non-medical sources across all quality measures and were of moderate overall quality and usefulness: Modified DISCERN (2.5 ± 1.1 vs 0.8 ± 0.9, z = -6.0, p < 0.001), GQS (3.2 ± 1.0 vs 1.7 ± 0.9, z = -5.7, p < 0.001), and JAMA (1.9 ± 0.8 vs 1.1 ± 0.3, z = -5.2, p < 0.001). Videos published during or after 2018 scored higher on Modified DISCERN (z = -3.2,p = 0.001) but not on GQS or JAMA. Video quality metrics such as total view count, likes, and comments, and channel subscriber count, did not correlate with higher video quality. However, amongst videos published by authoritative medical sources, total view count correlated positively with higher Modified DISCERN quality scores (p = 0.037). CONCLUSION: The overall quality and usefulness of YouTube videos on tonsillectomy is of low quality, but information published by authoritative medical sources score significantly higher. Clinicians should be mindful of increasing use of online information sources such as YouTube when counselling patients. Further research is needed in the medical community to create engaging, high-quality content to provide guidance for patients.

Evaluation of online text-based information resources of gynaecological cancer symptoms.

BACKGROUND: Gynaecological cancer symptoms are often vague and non-specific. Quality health information is central to timely cancer diagnosis and treatment. The aim of this study was to identify and evaluate the quality of online text-based patient information resources regarding gynaecological cancer symptoms. METHODS: A targeted website search and Google search were conducted to identify health information resources published by the Australian government and non-government health organisations. Resources were classified by topic (gynaecological health, gynaecological cancers, cancer, general health); assessed for reading level (Simple Measure of Gobbledygook, SMOG) and difficulty (Flesch Reading Ease, FRE); understandability and actionability (Patient Education Materials Assessment Tool, PEMAT, 0-100), whereby higher scores indicate better understandability/actionability. Seven criteria were used to assess cultural inclusivity specific for Aboriginal and Torres Strait Islander people; resources which met 3-5 items were deemed to be moderately inclusive and 6+ items as inclusive. RESULTS: A total of 109 resources were identified and 76% provided information on symptoms in the context of gynaecological cancers. The average readability was equivalent to a grade 10 reading level on the SMOG and classified as 'difficult to read' on the FRE. The mean PEMAT scores were 95% (range 58-100) for understandability and 13% (range 0-80) for actionability. Five resources were evaluated as being moderately culturally inclusive. No resource met all the benchmarks. CONCLUSIONS: This study highlights the inadequate quality of online resources available on pre-diagnosis gynaecological cancer symptom information. Resources should be revised in line with the recommended standards for readability, understandability and actionability and to meet the needs of a culturally diverse population.

Artificial intelligence large language model ChatGPT: is it a trustworthy and reliable source of information for sarcoma patients?

Introduction: Since its introduction in November 2022, the artificial intelligence large language model ChatGPT has taken the world by storm. Among other applications it can be used by patients as a source of information on diseases and their treatments. However, little is known about the quality of the sarcoma-related information ChatGPT provides. We therefore aimed at analyzing how sarcoma experts evaluate the quality of ChatGPT's responses on sarcoma-related inquiries and assess the bot's answers in specific evaluation metrics. Methods: The ChatGPT responses to a sample of 25 sarcoma-related questions (5 definitions, 9 general questions, and 11 treatment-related inquiries) were evaluated by 3 independent sarcoma experts. Each response was compared with authoritative resources and international guidelines and graded on 5 different metrics using a 5-point Likert scale: completeness, misleadingness, accuracy, being up-to-date, and appropriateness. This resulted in maximum 25 and minimum 5 points per answer, with higher scores indicating a higher response quality. Scores ≥21 points were rated as very good, between 16 and 20 as good, while scores ≤15 points were classified as poor (11-15) and very poor (≤10). Results: The median score that ChatGPT's answers achieved was 18.3 points (IQR, i.e., Inter-Quartile Range, 12.3-20.3 points). Six answers were classified as very good, 9 as good, while 5 answers each were rated as poor and very poor. The best scores were documented in the evaluation of how appropriate the response was for patients (median, 3.7 points; IQR, 2.5-4.2 points), which were significantly higher compared to the accuracy scores (median, 3.3 points; IQR, 2.0-4.2 points; p = 0.035). ChatGPT fared considerably worse with treatment-related questions, with only 45% of its responses classified as good or very good, compared to general questions (78% of responses good/very good) and definitions (60% of responses good/very good). Discussion: The answers ChatGPT provided on a rare disease, such as sarcoma, were found to be of very inconsistent quality, with some answers being classified as very good and others as very poor. Sarcoma physicians should be aware of the risks of misinformation that ChatGPT poses and advise their patients accordingly.