Lost in Translation: Multilingual Analysis of Online Breast Cancer Information.

INTRODUCTION: Patients use the internet to learn more about health conditions. Non-English-speaking patients may face additional challenges. The quality of online breast cancer information, the most common cancer in women, is uncertain. This study aims to examine the quality of online breast cancer information for English and non-English-speaking patients. METHODS: Three search engines were queried using the terms: "how to do a breast examination," "when do I need a mammogram," and "what are the treatment options for breast cancer" in English, Spanish, and Chinese. For each language, 60 unique websites were included and classified by type and information source. Two language-fluent reviewers evaluated website quality using the Journal of American Medical Association benchmark criteria (0-4) and the DISCERN tool (1-5), with higher scores representing higher quality. Scores were averaged for each language. Health On the Net code presence was noted. Inter-rater reliability between reviewers was assessed. RESULTS: English and Spanish websites most commonly originated from US sources (92% and 80%, respectively) compared to Chinese websites (33%, P < 0.001). The most common website type was hospital-affiliated for English (43%) and foundation/advocacy for Spanish and Chinese (43% and 45%, respectively). English websites had the highest and Chinese websites the lowest mean the Journal of American Medical Association (2.2 ± 1.4 versus 1.0 ± 0.8, P = 0.002) and DISCERN scores (3.5 ± 0.9 versus 2.3 ± 0.6, P < 0.001). Health On the Net code was present on 16 (8.9%) websites. Inter-rater reliability ranged from moderate to substantial agreement. CONCLUSIONS: The quality of online information on breast cancer across all three languages is poor. Information quality was poorest for Chinese websites. Improvements to enhance the reliability of breast cancer information across languages are needed.

Quality Analysis of Online Resources for Patients with Peripheral Artery Disease.

BACKGROUND: The burden of peripheral artery disease is significant for public health but the readily available on-line information on the disease is poorly studied. This study seeks to evaluate the quality and readability of patient resources and identify gaps that appear in the top search results for peripheral artery disease. METHODS: Internet searches were performed for "PAD" and "Peripheral Artery Disease" and "PVD" on three search engines and two metasearch engines. The top 30 websites from each search engine were compiled, screened, and evaluated across four categories of information to assess overall quality: accountability, interactivity, structure, and content. Four indices were used to evaluate readability of the text for the viewer. Statistical analyses was performed using Rstudio with ANOVA. RESULTS: Sixty-three websites met inclusion criteria, of which 25 were open access (34.9%), 30 were from hospital/healthcare organization (48%), 5 were from a governmental agency (8%), 4 were industry sponsored (6%), and 2 were from professional medical societies (3%). Median total quality score was 19 out of 47 (IQR, 15 -30): of the components of this score, accountability was 5 out of 17 (2 -10), interactivity was 2 out of 5 (2.0 -2.0), site structure was 3 out of 4 (2.5 -3.0), and site content was 11 out of 21 (7 -14). Total score varied significantly by organization type (P = 0.007). Open access (30, 17 -34, median, IQR) and governmental agency (30, 29 -31) websites scored the highest while hospital/healthcare organization (16, 14v21) websites scored the lowest. Overall readability was low with a median Flesch-Kincaid Grade Level Score of 10.7 (IQR, 10 -12). Using this index, only one website (1.6%) was written below the recommended 6th grade reading level. CONCLUSION: Freely available online patient education materials for peripheral artery disease are poor, have varying quality, and are largely written at a level higher than that of an average US adult thus depriving the patient from understanding the existing information. We recommend that the vascular surgery community re-examine the current offering and provide improved readable websites to patients to facilitate patient education and shared decision making.

Patients with COVID-19 share their experiences of recovering at home following hospital care transitions and discharge preparation.

INTRODUCTION: Patients discharged following hospitalization for COVID-19 require clear discharge protocols, information resources and communications to adequately prepare them to safely and successfully transition from hospital to home. Our study focuses on the patients' transition to recovering at home including their hospital discharge preparation and hospital experiences. METHODS: A qualitative descriptive study design involved interviewing patients who had been hospitalized for COVID-19 in one urban Alberta, Canada centre. Purposive sampling was used to select patients from a centralized COVID-19 hospital patient database stratified by month between March 2020 and February 2021. Other inclusion criteria (e.g., sex and age) were also considered. Semi-structured interviews with patients were recorded, transcribed and analysed using thematic analysis. Data sufficiency and saturation were determined. RESULTS: Twelve patients shared their lived experiences and recovery journey from COVID-19. Themes were reported under three main areas as framed by the study aim-the current status of patients recovering at home, including the supports they used to manage; their discharge process and preparation to go home; and their various hospital-related experiences. Suggestions for improving aspects of the patient journey were also captured. CONCLUSION: Findings provided details of the needs, information gaps and what matters most to patients when they are recovering from COVID-19 at home, including their preparation to safely and successfully transition from hospital to home (i.e., feeling well prepared to go home, including being adequately assessed and having clear discharge protocols and communication). Key learnings were applied to improve or develop patient discharge and transition resources. PATIENT OR PUBLIC CONTRIBUTION: A patient/family advisor and patient experience partners were involved throughout the study, codeveloping all aspects, from the study design to the reporting and application of the findings. Leading into the study, patient experiences and feedback regarding the home from hospital recovery journey informed multiple aspects, including the codevelopment of the interview guide.

Cleft Care Readability: Can Patients Access Helpful Online Resources?

OBJECTIVE: The present study identifies and analyzes online patient resources for cleft lip with or without cleft palate to survey the online educational landscape relative to the recommended difficulty set by the National Institutes of Health (NIH) and American Medical Association (AMA). METHODS: An internet search of "cleft palate," "cleft lip," and 12 similar inputs were entered into a search engine. The first 50 links for each search term were identified, collected, and reviewed individually for relevance and accessibility. The content of the websites was analyzed with Readability Studio Version 2019.1. The following readability metrics were utilized in this study: (1) Coleman-Liau (grade levels), (2) New Dale-Chall, (3) Flesch-Kincaid, (4) Flesch Reading Ease, (5) FORCAST, (6) Fry, (7) Gunning Fog, (8) New Fog Count, (9) Raygor Readability Estimate, and (10) Simple Measure of Gobbledygook. RESULTS: In no combination of search terms did any collection of links provide information within the mid-seventh grade levels recommended by the NIH. The analysis of 143 unique websites in the "Cleft Palate" group showed a readability level appropriate to high school students. The analysis of 144 unique websites in the "Cleft Lip" group showed a readability level appropriate for eighth grade students with 6 months of class complete. CONCLUSIONS: The information presented to patients on cleft care is too complex and well above the recommended 7th-grade reading level target set forth by the NIH and AMA, which hinders functional health literacy.

Improving Access to Standardized Fertility Preservation Information for Older Adolescents and Young Adults with Cancer: Using a User-Centered Approach with Young Adult Patients, Survivors, and Partners to Refine Fertility Knowledge Transfer.

Adolescent and young adult (AYA) cancer patients under 40 should be made aware of their fertility risks and preservation options throughout their care. However, discussions on fertility preservation (FP) do not routinely occur. With a dearth of FP resources, oncology providers may lack knowledge around FP. Thus, informational needs can be unmet, leading to anxiety and distress in patients. Provision of pertinent and timely information can help patients cope better with their diagnosis. FP pamphlets were developed for men and women with cancer. A cross-sectional in-house survey, using convenience sampling, evaluated the pamphlets' effectiveness and measured ease of understanding, acceptability, and perceived utility. Patients and partners were also asked to provide recommendations and complete the Short Test of Functional Health Literacy in Adults (S-TOFHLA) measuring health literacy level. This helps determine if health literacy influences perception of pamphlet effectiveness. All participants (n = 56) reviewed both pamphlets. Fifty-four participants (96 %) found the pamphlet for men useful, while 29 participants (52 %) improved their male fertility knowledge. The pamphlet for women was useful for 52 participants (93 %) and improved knowledge in 35 (63 %) of them. Although the majority of participants had adequate health literacy (98 %), there was insufficient sample diversity to determine if health literacy influenced the pamphlet's effectiveness. Participants indicated preference in receiving verbal (73 %) and written (66 %) information over watching videos or in-class education. They recommended including fertility clinics, financial resources, and statistics in the brochures. These FP pamphlets were concluded as effective in supporting patients in making FP decisions.

The role of nature in cancer patients' lives: a systematic review and qualitative meta-synthesis.

BACKGROUND: A systematic review and meta-synthesis was conducted to identify, compare and synthesize the published qualitative literature contributing to our understanding of the role of nature in cancer patients' lives. METHOD: An electronic search of Medline, CINAHL, PsycINFO and Cochrane Databases was conducted to identify qualitative studies focused on cancer patients' nature experiences published between January 1985 and May 2015. Records were assessed according to pre-defined inclusion criteria. Data were extracted on study characteristics and evaluated using the COREQ guidelines for comprehensive quality reporting. Qualitative data from 'results' and 'findings' sections were entered into data management software NVivo in order to identify recurring themes and facilitate interpretation across studies. RESULTS: From 11 eligible publications, seven inter-related core themes with descriptive themes were identified as follows: connecting with what is valued; being elsewhere, seeing and feeling differently; exploration, inner and outer excursions; home and safe; symbolism, understanding and communicating differently; benefitting from old and new physical activities; and, enriching aesthetic experiences. CONCLUSIONS: Nature provides patients with unburdened physical and psychic space invested with personal significance. Findings propose nature's role as a "secure base" offering patients a familiar and nurturing context from which new perspectives can emerge and caring connections can be made with themselves, others, the past, and the future. As such, nature supported patients to navigate the clinical and personal consequences of cancer. Comprehensive representation of cancer patients' nature experiences identified patient values and care opportunities embedded in clinical and personal environments, which may be considered for future research and care service development.

What do adolescents and young adults want from cancer resources? Insights from a Delphi panel of AYA patients.

PURPOSE: Cancer treatment programs and community-based support organizations are increasingly producing information and support resources geared to adolescent and young adult patients (AYAs); however, systematically-derived knowledge about user preferences for these resources is lacking. The primary purpose of this study was to generate findings from informed AYA cancer patients that resource developers can use to create products consistent with AYAs' expressed preferences for information and support. METHODS: Utilizing a modified Delphi technique, AYA cancer patients identified barriers to optimal AYA cancer care, cancer resources that address their needs, and specific characteristics of cancer resources they find helpful. The Delphi panel consisted of a convenience sample of 21 patients aged 18-39 years, who were diagnosed with cancer between ages 15-39 and were no more than 8 years out from cancer treatment at the time of the study. Survey data were collected in three consecutive and iterative rounds over the course of 6 months in 2015. RESULTS: Findings indicated that AYA patients prefer resources that reduce feelings of loneliness, create a sense of community or belonging, and provide opportunities to meet other AYA patients. Among the top barriers to optimal cancer care, AYAs identified a lack of cancer care providers specializing in AYA care, a lack of connection to an AYA patient community, and their own lack of ability to navigate the health system. Participants also described aspects of cancer information and supportive care resources that they believe address AYAs' concerns. CONCLUSION: Information derived from this study will help developers of cancer information and support resources to better reach their intended audience. From the point of view of AYA cancer patients, optimal cancer care and utilization of information and support resources requires that cancer support programs foster meaningful connections among AYA patients. Results also suggest that patient resources should equip AYAs with practical knowledge and skills necessary to navigate the health system and advocate for themselves. Given patient interest in social media, future research should further investigate optimizing online resources to serve the AYA cancer population.

Potential Use of ChatGPT in Responding to Patient Questions and Creating Patient Resources.

ChatGPT (OpenAI) is an artificial intelligence-based free natural language processing model that generates complex responses to user-generated prompts. The advent of this tool comes at a time when physician burnout is at an all-time high, which is attributed at least in part to time spent outside of the patient encounter within the electronic medical record (documenting the encounter, responding to patient messages, etc). Although ChatGPT is not specifically designed to provide medical information, it can generate preliminary responses to patients' questions about their medical conditions and can precipitately create educational patient resources, which do inevitably require rigorous editing and fact-checking on the part of the health care provider to ensure accuracy. In this way, this assistive technology has the potential to not only enhance a physician's efficiency and work-life balance but also enrich the patient-physician relationship and ultimately improve patient outcomes.

Readability of Online Patient Material Provided by Reflux Centers in the United States.

The American Medical Association (AMA) and the National Institutes of Health (NIH) suggest patient education materials should not exceed the sixth-grade reading level. Several studies have shown that patient information has been written well above this reading level across multiple specialties. A search was conducted utilizing the Google Chrome browser and the Google search engine. The key words "Reflux Center" and "GERD Center" were used to identify links to programs within the United States. The web site's general description of reflux or gastroesophageal reflux disease was copied and pasted into the Readable.io service, and the readability tests were conducted via the program. Of 52 web sites, none had fulfilled the recommended reading level. Our results reveal that readability related to reflux pathology on center web sites is too difficult for the average patient. In order to improve patient education regarding reflux pathology and treatment, reading materials should be improved.

Readability, Content, and Accountability Assessment of Online Health Information for Retinitis Pigmentosa & Retinitis Pigmentosa Treatment Options.

PURPOSE: New therapies for retinitis pigmentosa (RP) have led to patients desiring more information about their disease. We assessed the readability, content, and accountability of online health information for RP and its treatments. METHODS: Two internet queries were performed: one pertaining to the condition RP, and another pertaining to treatments of RP. Three analyses were performed on the top search results that met eligibility criteria: (1) A readability analysis produced an average reading level; (2) A content analysis was conducted to score each source on the accuracy, completeness, clarity, and organization of the content; and (3) An accountability analysis was performed to evaluate adherence to accountability benchmarks, including authorship, attribution, disclosure, and currency. RESULTS: The mean reading level was 12.0 (SD = 3.2, 95% CI = 11.0-13.0) for the 8 RP webpages and 12.5 (SD = 3.1, 95% CI = 11.7-13.4) for the 10 RP treatment webpages. The mean content score for RP sites was 21.3 of 32 points (SD = 4.1, 95% CI = 19.5-23.0). The mean content score for RP treatment sites was 5.5 out of 16 points (SD = 3.7, 95% CI = 4.1-6.9). The inter-rater reliability was 0.973 (Cronbach's alpha). For RP sites, the mean accountability score was 2.6 out of 4 points (SD = 0.9, 95% CI = 1.9-3.4). For RP treatment sites, the mean accountability score was 2 out of 4 points (SD = 0.9, 95% CI = 1.4-2.6). CONCLUSION: Our data suggest that the online information available to patients regarding RP and RP treatment options exceeds the AMA-recommended sixth-grade reading level and contains gaps in content relevant to patients.

Assessment of available online educational resources for patients with atrial fibrillation.

Background: A diagnosis of atrial fibrillation (AF) often leads patients to search online for information, which can expose them to information of varied quality. Objective: We conducted a qualitative systematic review of websites that contain useful information regarding AF. Methods: The following terms were searched on 3 search engines (Google/Yahoo/Bing): (Atrial fibrillation for patients), (What is atrial fibrillation), (Atrial fibrillation patient information), (Atrial fibrillation educational resources). Inclusion criteria included websites with comprehensive AF information and information about treatment options. The Patient Education Materials Assessment Tool for Printable Materials (PEMAT-P) and PEMAT for Audiovisual Materials assessed understandability and actionability (score range 0-100). Those with a mean PEMAT-P score of >70, meaning acceptable understandability and actionability, underwent DISCERN score assessment of information content quality and reliability (score range 16-80). Results: The search yielded 720 websites that underwent full review. After exclusions, 49 underwent full scoring. The mean overall PEMAT-P score was 69.3 ± 17.2. The mean PEMAT-AV score was 63.4 ± 13.6. Of the websites that scored >70% on the PEMAT-P, 23 (46%) underwent DISCERN scoring. The mean DISCERN score was 54.7 ± 4.6. Conclusions: There is a wide variation in the understandably, actionability, and quality of websites, many not providing patient-level materials. Knowledge of quality websites could provide an important adjunct for improving patients understanding of AF.

YouTube videos provide low-quality educational content about rotator cuff disease.

BACKGROUND: YouTube has become a popular source of healthcare information in orthopedic surgery. Although quality-based studies of YouTube content have been performed for information concerning many orthopedic pathologies, the quality and accuracy of information on the rotator cuff have yet to be evaluated. The purpose of the current study was to evaluate the reliability and educational content of YouTube videos concerning the rotator cuff. METHODS: YouTube was queried for the term "rotator cuff." The first 50 videos from this search were evaluated. Video reliability was assessed using the Journal of the American Medical Association (JAMA) benchmark criteria (range, 0-5). Educational content was assessed using the global quality score (GQS; range, 0-4) and the rotator cuff-specific score (RCSS; range, 0-22). RESULTS: The mean number of views was 317,500.7±538,585.3. The mean JAMA, GQS, and RCSS scores were 2.7±2.0, 3.7±1.0, and 5.6±3.6, respectively. Non-surgical intervention content was independently associated with a lower GQS (ß=-2.19, p=0.019). Disease-specific video content (ß=4.01, p=0.045) was the only independent predictor of RCSS. CONCLUSIONS: The overall quality and educational content of YouTube videos concerned with the rotator cuff were low. Physicians should caution patients in using such videos as resources for decision-making and should counsel them appropriately.

Canadian Resources on Cannabis Use and Fertility, Pregnancy, and Lactation: Scoping Review.

BACKGROUND: Cannabis use among reproductive-aged Canadians is increasing, but our understanding of its impacts on fertility, pregnancy, and breast milk is still evolving. Despite the availability of many web-based resources, informed decision-making and patient counseling are challenging for expectant families and providers alike. OBJECTIVE: We aimed to conduct a scoping review of publicly available web-based Canadian resources to provide information on the effects of cannabis on fertility, pregnancy, and breast milk. METHODS: Following PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews), we systematically searched 8 databases between January 1, 2010, and November 30, 2020, and web pages of 71 Canadian obstetrical, government, and public health organizations. We included English resources discussing the effects of cannabis on fertility, pregnancy, breastfeeding, or the exposed fetus and infant. Epidemiological characteristics, readability, and content information were extracted and summarized. RESULTS: A total of 183 resources met our inclusion criteria. Resources included content for public audiences (163/183, 89.1%) and health care providers (HCPs; 31/183, 16.9%). The resources were authored by national-level (46/183, 25.1%), provincial or territorial (65/183, 35.5%), and regional (72/183, 39.3%) organizations. All provinces and territories had at least one resource attributed to them. The majority (125/183, 68.3%) were written at a >10 grade reading level, and a few (7/183, 3.8%) were available in languages other than English or French. The breadth of content on fertility (55/183, 30.1%), pregnancy (173/183, 94.5%), and breast milk or breastfeeding (133/183, 72.7%) varied across resources. Common themes included citing a need for more research into the effects of cannabis on reproductive health and recommending that patients avoid or discontinue cannabis use. Although resources for providers were consistent in recommending patient counseling, resources targeting the public were less likely to encourage seeking advice from HCPs (23/163, 14.1%). CONCLUSIONS: Canadian resources consistently identify that there is no known safe amount of cannabis that can be consumed in the context of fertility, pregnancy, and breastfeeding. Areas of improvement include increasing readability and language accessibility and encouraging bidirectional communication between HCPs and patients. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2020-045006.

Quality assessment of consumer-facing websites on sodium reduction.

The purpose of this paper is to evaluate the quality of information and guidance on dietary sodium reduction available on consumer-facing websites. Google Trends was used to identify the five most-used search terms related to dietary sodium reduction. For each term, websites on the first two pages were collected (n = 18-20). Of 93 websites collected, 24 were excluded due to defective links, duplicate websites, or not being consumer-focused. The remaining 69 websites were evaluated using a novel instrument, JHU-SALT, that includes 14 questions on topics related to salt reduction. The questions are grouped into three domains ("information," "guidance," and "accuracy"). For each question, websites were scored using a 3-step ordinal scale ("topic not addressed," "topic somewhat addressed," or "topic addressed adequately"). Only three of 14 JHU-SALT questions were addressed adequately by a majority of websites. Many websites provided information on the adverse health effects of a high sodium diet (74%, n = 51) or mentioned intake recommendations (64%, n = 44). Information on fundamental concepts was largely missing. The majority of websites (80%, n = 55) provided information on lifestyle strategies to reduce blood pressure, but most did not provide guidance to help implement those strategies. While missing information was common, misinformation was uncommon. The DISCERN questionnaire was utilized as well. Consumers seeking information and guidance on dietary sodium reduction will find that most available websites provide accurate but limited information, and insufficient guidance on how to lower sodium intake. Websites that provide both relevant information and guidance are needed to help consumers effectively reduce dietary sodium.

Sustainable generation of patient-led resources in a learning health system.

BACKGROUND: Patient and Family Advisory Councils (PFACs) are an emerging mechanism to integrate patient and family voices into healthcare. One such PFAC is the Patient Advisory Council (PAC) of the ImproveCareNow (ICN) network, a learning health system dedicated to advancing the care of individuals with pediatric inflammatory bowel disease (IBD). Using quality improvement techniques and co-production, the PAC has made great strides in developing novel patient-led resources. METHODS: This paper, written by patients and providers from ICN, reviews current ICN data on PAC-generated resources, including creation processes and download statistics. RESULTS: Looking at different iterations of PAC infrastructure, this paper highlights specific leadership approaches used to increase patient involvement and improve resource creation. Emerging data suggests that the larger ICN learning health system has had limited interactions with these resources. CONCLUSION: ICN provides a novel approach for meaningful integration of patient partners into learning health systems. This paper points to the incredible value of PFAC expertise in the resource creation process. Future work should seek to support PFAC development across other diseases and address the challenges of integrating patient-led resources into clinical care.

Quality improvement of clinic flow for complex genetic conditions: Using Ehlers-Danlos syndrome as a model.

BACKGROUND: Genetic providers face the challenge of having adequate time to conduct a comprehensive evaluation. Hypermobile Ehlers-Danlos (hEDS) syndrome has a complex array of symptoms. An initial visit can involve approximately 60-80 min and an additional 45 min for the check-in and checkout process. We propose a model to improve clinic flow and patient satisfaction by using: (a) pre-appointment questionnaire (b) disease information sheet outlining basic management and (c) itinerary detailing the visit. METHODS: New patients were given a questionnaire, an EDS information sheet, and a visit itinerary. In the end, a patient satisfaction survey was administered containing 18 questions pertaining to their satisfaction with the questionnaire, the information sheet, and their overall visit. Completed surveys were turned in to the front desk to maintain anonymity. RESULTS: Based on the survey results, patient satisfaction toward the implementation of a questionnaire was overwhelmingly positive. Survey responders found that the itinerary was added to their understanding of the appointment process and that the hEDS information sheets were helpful, understandable, and appropriate in length. Respondents said that they strongly agreed or agreed with the following statements: (a) I was satisfied with the visit; (b) I now have a better understanding of my condition; (c) This visit was successful in addressing my most pressing concerns; and (d) I would recommend this clinic to others. CONCLUSION: Designing a disease-centered model that implements patient-centered resources improves patient understanding and satisfaction for new hEDS patient visits. This model can be emulated in diagnosis and management of other complex genetic and nongenetic conditions.