ABSTRACT
BACKGROUND: The global prevalence of diabetes mellitus is projected to reach approximately 700 million by the year 2045, with roughly 90-95% of all diabetes cases being type 2 in nature. Patients with type 2 diabetes mellitus (T2DM) frequently seek information about complementary and alternative medicine (CAM) online. This study assessed the quality of publicly accessible websites providing consumer health information at the intersection of T2DM and CAM. METHODS: An online search engine (Google) was searched to identify pertinent websites containing information specific to CAM for T2DM patients, and the relevant websites were then screened with an eligibility criteria. Consumer health information found on eligible websites were then assessed for quality using the DISCERN instrument, a 16-item standardized scoring system. RESULTS: Across the 480 webpages identified, 94 unique webpages remained following deduplication, and 37 eligible webpages belonged to and were collapsed into 30 unique websites that were each assessed using the DISCERN instrument. The mean overall quality score (question 16) across all 30 assessed websites was 3.55 (SD = 0.86), and the mean summed DISCERN score was 52.40 (SD = 12.11). Eighty percent of websites presented a wide range of CAM treatment options with the associated benefits/risks of each treatment, but in 56.7% of the websites, the sources used to collect information were unreliable. CONCLUSION: This study identified, assessed, and presents findings on the quality of online CAM information for T2DM. Although there were several high scoring websites, there was variability across most of the individual DISCERN items in the assessed websites. This study highlights the importance of awareness among healthcare providers regarding the reliability of online information about CAM treatment and management options for T2DM. Healthcare providers should be aware of patients' information seeking behaviour, guide them in navigating through the content they encounter online, and provide them with resources containing trustworthy and reliable information.
Subject(s)
Complementary Therapies/statistics & numerical data , Complementary Therapies/standards , Consumer Health Information/standards , Data Accuracy , Diabetes Mellitus, Type 2/therapy , Practice Guidelines as Topic , Quality of Health Care/standards , Adult , Aged , Aged, 80 and over , Consumer Health Information/statistics & numerical data , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Quality of Health Care/statistics & numerical data , Reproducibility of ResultsABSTRACT
Misinformation is one of the greatest threats to global health. Atopic dermatitis (AD) is a common skin disorder with a complex multifactorial aetiology, rendering it susceptible to misinformation. Little is known about the content of misinformation regarding AD online. We performed a review of AD-related misinformation available online, via PubMed for scientific papers and Google for nonscientific websites. Key areas of misinformation were identified, including 'simple cures' for AD, diet, chemicals, dust, vaccines, red skin syndrome and alternative therapies. Patients with AD and their families are vulnerable to misinformation given the severe impact of AD on quality of life. Dermatologists must be aware of the false AD-related content being shared online, and be prepared to refute and rebut misinformation by providing appropriate evidence.
Subject(s)
Communication , Consumer Health Information/standards , Dermatitis, Atopic , Social Media , Consumer Health Information/methods , Dermatitis, Atopic/etiology , Dermatitis, Atopic/therapy , Dermatologists , Humans , Patient Education as Topic , Physician's Role , Quality of LifeABSTRACT
SIGNIFICANCE: Dry eye disease is a common condition with many complementary and alternative therapies promoted online. Patients may inquire about these therapies, and clinicians should be aware of the existence, safety, and efficacy of these therapies, as well as the quality of available online information. PURPOSE: Complementary and alternative medicine is a multibillion-dollar industry with increasing popularity. Dry eye disease is a chronic condition with many complementary and alternative therapies described online. Patients may inquire about and elect to forgo conventional treatments in favor of these therapies. This study identified alternative treatments for dry eye disease described online and evaluated the Web sites that described them. METHODS: An Internet search algorithm identified Web sites describing complementary and alternative therapies for dry eye disease. Web site quality was assessed using the Sandvik score to evaluate Web site ownership, authorship, source, currency, interactivity, navigability, and balance. The potential risk of Web sites to patients was assessed using a risk scoring system. A list of described therapies was compiled. RESULTS: Eight Web sites describing complementary and alternative therapies for dry eye disease were assessed. The Sandvik score classified more than half of the Web sites as "satisfactory" and none as "poor." The overall mean risk score was low at 0.9. One Web site displayed information that discouraged the use of conventional medicine, whereas no Web sites discouraged adhering to clinicians' advice. The Web sites listed 12 therapies with a further 32 found in Web site comments. The most common therapies were acupuncture, vitamin supplements, homeopathic eye drops, castor oil, coconut oil, and chamomile eye wash. CONCLUSIONS: The majority of analyzed Web sites were of satisfactory quality with a low potential risk to patients. However, some Web sites were biased toward their own therapies, lacked proper referencing, and/or did not identify authorship. Further research is required to ascertain the efficacy and safety of these therapies.
Subject(s)
Complementary Therapies/standards , Consumer Health Information/standards , Dry Eye Syndromes/therapy , Internet/standards , Medical Informatics/standards , Patient Education as Topic/standards , Databases, Factual , Humans , Quality Indicators, Health CareABSTRACT
BACKGROUND: Complementary and alternative medicine (CAM) use is prevalent among patients living with arthritis. Such patients often seek information online, for the purpose of gaining a second opinion to their healthcare provider or even self-medication. Little is known about the quality of web-based consumer health information at the intersection of CAM and arthritis; thus, investigating the quality of websites containing this information was the purpose of this study. METHODS: Four unique search terms were searched on Google across four English-speaking countries. We assessed the first 20 results of each search, including them if they contained CAM consumer health information for the treatment and/or management of arthritis. Eligible websites were assessed in duplicate using the DISCERN instrument, which consists of 16-items designed to assess quality. RESULTS: Of total of 320 webpages, 239 were duplicates, and a total of 38 unique websites were deemed eligible and assessed using the DISCERN instrument. The mean summed DISCERN scores across all websites was 55.53 (SD = 9.37). The mean score of the overall quality of each website was 3.71 (SD = 0.63), thus the majority of websites are ranked as slightly above 'fair' quality. CONCLUSION: Eligible websites generally received scores better than 'moderate' in terms of overall quality. Several shortcomings included a lack of transparency surrounding references used and underreporting of risks associated with treatment options. These results suggest that health providers should be vigilant of the variable quality of information their patients may be accessing online and educate them on how to identify high quality resources.
Subject(s)
Arthritis/therapy , Complementary Therapies/standards , Consumer Health Information/standards , Internet-Based Intervention , Cross-Sectional Studies , Data Analysis , HumansABSTRACT
Abstract Background: Complementary and alternative medicine (CAM) use is prevalent among patients living with arthritis. Such patients often seek information online, for the purpose of gaining a second opinion to their healthcare provider or even self-medication. Little is known about the quality of web-based consumer health information at the intersection of CAM and arthritis; thus, investigating the quality of websites containing this information was the purpose of this study. Methods: Four unique search terms were searched on Google across four English-speaking countries. We assessed the first 20 results of each search, including them if they contained CAM consumer health information for the treatment and/or management of arthritis. Eligible websites were assessed in duplicate using the DISCERN instrument, which consists of 16-items designed to assess quality. Results: Of total of 320 webpages, 239 were duplicates, and a total of 38 unique websites were deemed eligible and assessed using the DISCERN instrument. The mean summed DISCERN scores across all websites was 55.53 (SD = 9.37). The mean score of the overall quality of each website was 3.71 (SD = 0.63), thus the majority of websites are ranked as slightly above 'fair' quality. Conclusion: Eligible websites generally received scores better than 'moderate' in terms of overall quality. Several shortcomings included a lack of transparency surrounding references used and underreporting of risks associated with treatment options. These results suggest that health providers should be vigilant of the variable quality of information their patients may be accessing online and educate them on how to identify high quality resources.(AU)
Subject(s)
Humans , Arthritis , Complementary Therapies/standards , Consumer Health Information/standards , Health Services ResearchABSTRACT
OBJECTIVE: The spread of misinformation has accompanied the coronavirus pandemic, including topics such as immune boosting to prevent COVID-19. This study explores how immune boosting is portrayed on the internet during the COVID-19 pandemic. DESIGN: Content analysis. METHODS: We compiled a dataset of 227 webpages from Google searches in Canada and the USA using the phrase 'boost immunity' AND 'coronavirus' on 1 April 2020. We coded webpages for typology and portrayal of immune boosting and supplements. We recorded mentions of microbiome, whether the webpage was selling or advertising an immune boosting product or service, and suggested strategies for boosting immunity. RESULTS: No significant differences were found between webpages that appeared in the searches in Canada and the USA. The most common types of webpages were from news (40.5%) and commercial (24.7%) websites. The concept of immune boosting was portrayed as beneficial for avoiding COVID-19 in 85.5% of webpages and supplements were portrayed as beneficial in 40% of the webpages, but commercial sites were more likely to have these portrayals. The top immune boosting strategies were vitamin C (34.8%), diet (34.4%), sleep (34.4%), exercise (30.8%) and zinc (26.9%). Less than 10% of the webpages provide any critique of the concept of immune boosting. CONCLUSIONS: Pairing evidence-based advice for maintaining one's health (eg, healthy diet, exercise, sleep) with the phrase immune boosting and strategies lacking in evidence may inadvertently help to legitimise the concept, making it a powerful marketing tool. Results demonstrate how the spread of misinformation is complex and often more subtle than blatant fraudulent claims.
Subject(s)
Communication , Consumer Health Information , Coronavirus Infections , Immunologic Factors , Immunotherapy , Internet , Marketing , Pandemics , Pneumonia, Viral , Betacoronavirus , COVID-19 , Canada/epidemiology , Consumer Health Information/methods , Consumer Health Information/standards , Coronavirus Infections/epidemiology , Coronavirus Infections/immunology , Coronavirus Infections/prevention & control , Data Accuracy , Dietary Supplements/standards , Humans , Immunologic Factors/standards , Immunologic Factors/therapeutic use , Immunotherapy/methods , Immunotherapy/standards , Information Dissemination/ethics , Information Dissemination/methods , Internet/statistics & numerical data , Internet/trends , Marketing/ethics , Marketing/methods , Pandemics/prevention & control , Pneumonia, Viral/epidemiology , Pneumonia, Viral/immunology , Pneumonia, Viral/prevention & control , Public Health , SARS-CoV-2 , United States/epidemiologyABSTRACT
OBJECTIVES: This study aims to evaluate the quality, accuracy, and readability of Turkish online resources for platelet-rich plasma (PRP) injections for orthopedic therapy. PATIENTS AND METHODS: In this retrospective study, online searches using Google, Yandex, and Yahoo search engines were performed on 21-22-23 May 2019, respectively. "Platelet-rich plasma", "platelet-rich plasma treatment", "PRP", and "PRP treatment" were entered in Turkish into these three search engines. The first 50 websites from each search were collected. The quality and accuracy of online information related to PRP injections for orthopedic therapy were evaluated by three reviewers with the use of scoring criteria specific to PRP. The Flesch-Kincaid (FK) score was used to determine readability. RESULTS: Eighty-six unique websites were evaluated. The average quality and accuracy scores of all websites were 7.1±4.3 out of a maximum of 25 points and 7.3±2 out of a maximum of 12 points, respectively. The average FK score of all websites was 10.8±2.2. Only 27 websites (31.4%) had a FK score that was at or below the eighth-grade level. There were no significant differences among the mean scores of websites categorized by search terms, search results ranking, owners or reading level for both quality and accuracy scores. CONCLUSION: The information regarding PRP usage in orthopedic conditions provided by Turkish online resources has low quality and low accuracy ratings and is also difficult to read.
Subject(s)
Consumer Health Information/standards , Internet , Musculoskeletal Diseases/therapy , Platelet-Rich Plasma , Biological Therapy , Comprehension , Humans , Injections , Reading , Retrospective Studies , TurkeyABSTRACT
BACKGROUND: The number of people with cancer using complementary and alternative medicine (CAM) is increasing. However, CAM may have interactions with conventional cancer therapies. In addition, alternative medicine procedures may result in significant health risks. Because of the Internet, regional CAM methods easily spread globally. This study aims at evaluating CAM procedures offered on Spanish-speaking South American websites and assessing the quality of these websites. METHODS: An Internet search was carried out in nine Spanish-speaking countries in South America. Websites were analysed using a standardized tool. RESULTS: In total, 85 websites, with a wide range of 158 different CAM procedures were evaluated. The vast majority of websites had poor content and formal quality. Overall, no website was rated as very good and only two websites could be rated as good. Among the most commonly mentioned South American methods were an Aloe- mixture called "Fray Romano", graviola, uncaria tomentosa (Cat's claw), the "Método HANSI" and components of the lapacho tree. CONCLUSIONS: There is an urgent need for quality-assured, easy-to-find sites with high quality for Spanish speaking persons in South America. Several of the methods have already spread to Europe as graviola or uncaria.
Subject(s)
Complementary Therapies , Consumer Health Information/standards , Health Knowledge, Attitudes, Practice , Internet/standards , Neoplasms/therapy , Humans , Language , Qualitative Research , South AmericaABSTRACT
BACKGROUND: Pregnant women create their childbirth expectations from their available information. Therefore, they should have access to reliable and quality medical information. However, the literature points a knowledge gap with respect to the sources of information used by them. OBJECTIVES: The primary objective was to analyse the most influential and widely used sources of information about childbearing in Spanish pregnant women. The secondary objectives were to assess the quality and usefulness of the information sources, to identify those regarded as deficient by pregnant women and to discover differences in information use related to parity. DESIGN AND METHODS: A cross-sectional descriptive study was undertaken involving the administration of questionnaires to 40 primiparous and 40 multiparous (taking into account their first and second pregnancy). Social Network Analysis was used, as well as descriptive and inferential statistics for secondary objectives. RESULTS: Midwives were the most widely used (degree 0.988) and influential source of information (degree 0.600). Although the Internet was very much used (degree 0.738), its influence was very limited (degree 0.050). Healthcare professionals provided the most useful and highest quality information. Statistically significant differences have been found between first and second pregnancy of multiparous women in relation to the utilisation of some sources of information. CONCLUSIONS: Midwives were identified as the key professionals for informing pregnant women. The most influential sources were always people (this underscoring the importance of the face-to-face contact in the search for information). Although new technologies offered support, were unable to replace the information provided by healthcare professionals.
Subject(s)
Consumer Health Information/statistics & numerical data , Parturition/psychology , Pregnant Women/psychology , Adult , Consumer Health Information/standards , Cross-Sectional Studies , Female , Health Personnel/statistics & numerical data , Humans , Midwifery/statistics & numerical data , Pregnancy , Social Networking , Spain , Surveys and Questionnaires , Young AdultABSTRACT
OBJECTIVE: Written information can be an essential source of support in the promotion of lifestyle changes after a cancer diagnosis. This study aimed to identify and assess the quality of available online patient information materials (PIMs) in relation to diet and nutrition for patients with pelvic cancer. METHODS: The online sources of the National Health Service, cancer centres and charitable organisations throughout the UK were searched. Content was assessed using an evidence-based checklist, and readability with two validated formulas. Consumer feedback was sought through patient and public involvement (PPI) groups. RESULTS: Forty PIMs were identified; four were designed specifically for pelvic cancers (bladder, bowel, prostate) and 36 were generic (relevant for all cancers). Most PIMs had a good content score, with PIMs from charities scoring higher overall than PIMs from cancer centres [32 (4) vs. 23 (11), p < 0.001]. Seventy-three percent of PIMs had a readability score within acceptable levels (6th-8th grade; reading ability of 11-14 year-olds). PPI contributors found most PIMs useful and comprehensive but lacking specific information needed to meet individual needs. CONCLUSION: There is limited availability of online PIMs for cancer survivors and even fewer tailored to pelvic cancers. Most materials have comprehensive content and acceptable readability. Some PIMs may require improvement.
Subject(s)
Consumer Health Information/standards , Diet, Healthy , Internet , Nutrition Therapy , Pelvic Neoplasms , Access to Information , Cancer Care Facilities , Charities , Colorectal Neoplasms , Comprehension , Evidence-Based Practice , Female , Humans , Male , Prostatic Neoplasms , State Medicine , United Kingdom , Urinary Bladder NeoplasmsABSTRACT
Nowadays, medical information regarding various diseases and disorders is available online. The Internet has become the first choice for the patient when it comes to gathering detailed information about a disease or problem. Therefore, in view of this frequent occurrence, the information that is provided online needs to be accurate; providing comprehensive facts, transparency, and quality. A study was carried out to determine the accuracy of information related to breast cancer on various websites. Websites which share information online about breast cancer, in the Arabic language, were selected. The quality of the websites was to be evaluated; however, there is no standard method for evaluating the quality of health websites. Hence, a rating form was developed for this study, to determine the completeness and transparency of a specific number of websites using three popular search engines. A 16-item questionnaire was prepared and validated to determine the quality of individual websites in addition to using the DISCERN instrument for assessing consumer health information. Most of the websites (approximately 47%) were deemed to be commercial in nature. Thirty-three percent were developed by non-profit organizations. They disseminated information concerning the risk factors (93%), screening, mammography (93%), surgical treatment (93%), chemotherapy (89%), radiotherapy (93%), and complementary medicine (0%) surrounding the treatment of breast cancer. About 67% of the websites were estimated to give completely correct information. Incidentally, only five websites had a healthcare professional or expert as the author, while nine of them had no author. Although numerous breast cancer-related websites exist, most do a poor job in providing Arabic-speaking women with comprehensive information about breast cancer surgery. Providing easily-accessible, high-quality online information has the potential to significantly improve patients' experiences.
Subject(s)
Breast Neoplasms/therapy , Consumer Health Information/standards , Internet/standards , Language , Patient Education as Topic/standards , Search Engine/standards , Complementary Therapies , Female , Humans , Information Dissemination , Mammography , Mastectomy , Patient Education as Topic/methodsABSTRACT
BACKGROUND: Food allergy affects an estimated 8% of children and 3% of adults in the United States. Food-allergic individuals increasingly use the web for medical information. We sought to determine the educational quality of food allergy YouTube videos. METHODS: We performed a YouTube search using keywords "food allergy" and "food allergies". The 300 most viewed videos were included and analyzed for characteristics, source, and content. Source was further classified as healthcare provider, alternative medicine provider, patient, company, media, and professional society. A scoring system (FA-DQS) was created to evaluate quality (-10 to +34 points). Negative points were assigned for misleading information. Eight reviewers scored each video independently. RESULTS: Three hundred videos were analyzed, with a median of 6351.50 views, 19 likes, and 1 dislike. More video presenters were female (54.3%). The most common type of video source was alternative medicine provider (26.3%). Alternative treatments included the following: water fast, juicing, Ayurveda, apple cider, yoga, visualization, and sea moss. Controversial diagnostics included kinesiology, IgG testing, and pulse test. Almost half of the videos depicted a non-IgE-mediated reaction (49.0%).Videos by professional societies had the highest FA-DQS (7.27). Scores for videos by professional societies were significantly different from other sources (P < .001). There was a high degree of agreement among reviewers (ICC = 0.820; P < .001). CONCLUSION: YouTube videos on food allergy frequently recommend controversial diagnostics and commonly depict non-IgE-mediated reactions. There is a need for high-quality, evidence-based, educational videos on food allergy.
Subject(s)
Consumer Health Information/methods , Consumer Health Information/standards , Food Hypersensitivity , Internet , Video Recording , Food Hypersensitivity/diagnosis , Food Hypersensitivity/immunology , Food Hypersensitivity/therapy , Humans , United StatesABSTRACT
Offering breast cancer patients treatment choice has become a priority as the involvement of patients in the decision-making process is associated with improved physical and psychological outcomes. As the Internet is increasingly being used by patients as a source of medical information, it is important to evaluate the quality of information relating to breast cancer on the Internet. We analysed 200 websites returned by google.co.uk searching "breast cancer treatment options" in terms of their typology and treatment options described. These were related to standard measures of health information quality such as the JAMA score and the presence of quality certifications, as well as readability. We found that health portals were of higher quality whilst commercial and professional websites were of poorer quality in terms of JAMA criteria. Overall, readability was higher than previously reported for other conditions, and Google ranked websites with better readability higher. Most websites discussed surgical and medical treatments. Few websites, with a large proportion being of commercial typology, discussed complementary and alternative medicine. Google ranked professional websites low whilst websites from non-profit organizations were promoted in the ranking.
Subject(s)
Breast Neoplasms/therapy , Consumer Health Information/standards , Internet/standards , Search Engine/statistics & numerical data , Commerce/standards , Comprehension , Female , Humans , Information Dissemination , Organizations/standardsABSTRACT
Pollen information as such is highly valuable and was considered so far as a self-evident good free for the public. The foundation for reliable and serious pollen information is the careful, scientific evaluation of pollen content in the air. However, it is essential to state and define now the requirements for pollen data and qualifications needed for institutions working with pollen data in the light of technical developments such as automated pollen counting and various political interests in aerobiology including attempts to finally acknowledge pollen and spores as relevant biological particles in the air worth being considered for pollution and health directives. It has to be emphasized that inadequate pollen forecasts are a considerable health risk for pollen allergy sufferers. Therefore, the responsibility of institutions involved in pollen monitoring and forecasting is high and should be substantiated with respective qualifications and know-how. We suggest here for the first time a portfolio of quality criteria and demand rigorous scientific monitoring and certification of such institutions in the interest and for the protection of persons affected by a pollen allergy.
Subject(s)
Consumer Health Information/standards , Environmental Monitoring/standards , Pollen , Quality Assurance, Health Care/organization & administration , Rhinitis, Allergic, Seasonal/epidemiology , Rhinitis, Allergic, Seasonal/prevention & control , Austria/epidemiology , Evidence-Based Medicine , Forecasting , Humans , Population Surveillance/methods , Risk Assessment/standards , Science/standardsABSTRACT
The 68 National Cancer Institute (NCI)-designated comprehensive and cancer centers have been tasked with leading the campaign in the fight against cancer, as well as providing education and outreach to the public. Therefore, it is important for these organizations to have an effective online presence to disseminate information and engage patients. The purpose of this study was to assess both the functionality and usability of cancer centers' websites. The 68 center web domains were evaluated using two separate but complementary approaches. First, a webcrawler was used to score each website on five dimensions: accessibility, content, marketing, technology, and usability. Rankings on each dimension and an average ranking were calculated for all 68 centers. Second, a three-reader system was used to determine a list of all functionalities present on the websites. Both webcrawler scores and functionality prevalence were compared across center type. No differences were observed in webcrawler scores between comprehensive and cancer centers. Mean scores on all dimensions ranged between 5.47 and 7.09. For the functionality assessment, 64 unique functions were determined and categorized into 12 domains, with the average center possessing less than 50 % of the functions. This census assessment of NCI centers' websites suggests the need for improvement to capitalize on new dissemination platforms available online. Progress in development of this technology can help achieve the goals of public education and outreach to a broad audience. This paper presents performance guidelines evaluated against best-demonstrated practice to facilitate social media use improvement.
Subject(s)
Benchmarking , Consumer Health Information/standards , Internet , National Cancer Institute (U.S.)/standards , Social Media/standards , Community-Institutional Relations , Humans , Patient Education as Topic , United StatesABSTRACT
BACKGROUND: Education is a major health determinant and one of the main independent outcome predictors in rheumatoid arthritis (RA). The use of the Internet by patients has grown exponentially in the last decade. OBJECTIVE: To assess the characteristics, legibility and quality of the information available in Spanish in the Internet regarding to rheumatoid arthritis. MATERIAL AND METHODS: The search was performed in Google using the phrase rheumatoid arthritis. Information from the first 30 pages was evaluated according to a pre-established format (relevance, scope, authorship, type of publication and financial objective). The quality and legibility of the pages were assessed using two validated tools, DISCERN and INFLESZ respectively. Data extraction was performed by senior medical students and evaluation was achieved by consensus. RESULTS: The Google search returned 323 hits but only 63% were considered relevant; 80% of them were information sites (71% discussed exclusively RA, 44% conventional treatment and 12% alternative therapies) and 12.5% had a primary financial interest. 60% of the sites were created by nonprofit organizations and 15% by medical associations. Web sites posted by medical institutions from the United States of America were better positioned in Spanish (Arthritis Foundation 4th position and American College of Rheumatology 10th position) than web sites posted by Spanish speaking countries. CONCLUSIONS: There is a risk of disinformation for patients with RA that use the Internet. We identified a window of opportunity for rheumatology medical institutions from Spanish-speaking countries to have a more prominent societal involvement in the education of their patients with RA.
Subject(s)
Arthritis, Rheumatoid , Comprehension , Consumer Health Information/statistics & numerical data , Internet , Language , Quality of Health Care/statistics & numerical data , Arthritis, Rheumatoid/diagnosis , Arthritis, Rheumatoid/therapy , Consumer Health Information/standards , Cross-Sectional Studies , Humans , Search EngineABSTRACT
OBJECTIVE: To investigate young people's experiences of persistent musculoskeletal pain, including care needs and current service gaps as well as perceptions about the role of digital technologies to support their co-care. METHODS: A qualitative study employing two independent data collection modes: in-depth individual semistructured interviews and focus groups. SETTING: Community settings throughout Australia. PARTICIPANTS: Participants were included if they had experienced persistent musculoskeletal pain of >3-month duration with an average of ≥3 on the visual analogue scale over the preceding 3â months, including non-specific conditions (eg, low back pain) and specific conditions (eg, juvenile idiopathic arthritis and other systemic arthritides), with/without pre-existing or current diagnosed mental health conditions. 23 young people (87.0% women; mean (SD) age: 20.8 (2.4) years) from across 6 Australian jurisdictions participated. Almost two-thirds of participants with persistent musculoskeletal pain reported comorbid mental health conditions. MAIN OUTCOME MEASURES: Inductive and deductive approaches to analyse and derive key themes from verbatim transcripts. RESULTS: Participants described their daily experiences of living with persistent musculoskeletal pain, their fears and the challenges imposed by the invisibility of pain, and the two-way relationship between their pain and mental well-being. A lack of relevant and accessible information and resources tailored to young people's unique needs, integrated and youth-relevant healthcare services and adequately skilled healthcare practitioners were identified as key care gaps. Participants strongly advocated for the use of digital technologies to improve access to age-appropriate resources and support for co-care. CONCLUSIONS: Young people living with persistent musculoskeletal pain described the absence of age-appropriate pain services and clearly articulated their perceptions on the role of, and opportunities provided by, digital technologies to connect with and support improved pain healthcare. Innovative and digitally-enabled models of pain care are likely to be helpful for this group.
Subject(s)
Consumer Health Information/standards , Delivery of Health Care, Integrated/standards , Health Knowledge, Attitudes, Practice , Health Services Needs and Demand/statistics & numerical data , Musculoskeletal Pain/therapy , Adolescent , Adult , Australia , Female , Focus Groups , Humans , Internet , Male , Mobile Applications , Pain Management/methods , Qualitative Research , Young AdultABSTRACT
IMPORTANCE: The degree to which patients are empowered by written educational materials depends on the text's readability level and the accuracy of the information provided. The association of a website's affiliation or focus on treatment modality with its readability and accuracy has yet to be thoroughly elucidated. OBJECTIVE: To compare the readability and accuracy of patient-oriented online resources for pancreatic cancer by treatment modality and website affiliation. DESIGN: An online search of 50 websites discussing 5 pancreatic cancer treatment modalities (alternative therapy, chemotherapy, clinical trials, radiation therapy, and surgery) was conducted. The website's affiliation was identified. Readability was measured by 9 standardized tests, and accuracy was assessed by an expert panel. MAIN OUTCOMES AND MEASURES: Nine standardized tests were used to compute the median readability level of each website. The median readability scores were compared among treatment modality and affiliation categories. Accuracy was determined by an expert panel consisting of 2 medical specialists and 2 surgical specialists. The 4 raters independently evaluated all websites belonging to the 5 treatment modalities (a score of 1 indicates that <25% of the information is accurate, a score of 2 indicates that 26%-50% of the information is accurate, a score of 3 indicates that 51%-75% of the information is accurate, a score of 4 indicates that 76%-99% of the information is accurate, and a score of 5 indicates that 100% of the information is accurate). RESULTS: The 50 evaluated websites differed in readability and accuracy based on the focus of the treatment modality and the website's affiliation. Websites discussing surgery (with a median readability level of 13.7 and an interquartile range [IQR] of 11.9-15.6) were easier to read than those discussing radiotherapy (median readability level, 15.2 [IQR, 13.0-17.0]) (P = .003) and clinical trials (median readability level, 15.2 [IQR, 12.8-17.0]) (P = .002). Websites of nonprofit organizations (median readability level, 12.9 [IQR, 11.2-15.0]) were easier to read than media (median readability level, 16.0 [IQR, 13.4-17.0]) (P < .001) and academic (median readability level, 14.8 [IQR, 12.9-17.0]) (P < .001) websites. Privately owned websites (median readability level, 14.0 [IQR, 12.1-16.1]) were easier to read than media websites (P = .001). Among treatment modalities, alternative therapy websites exhibited the lowest accuracy scores (median accuracy score, 2 [IQR, 1-4]) (P < .001). Nonprofit (median accuracy score, 4 [IQR, 4-5]), government (median accuracy score, 5 [IQR, 4-5]), and academic (median accuracy score, 4 [IQR, 3.5-5]) websites were more accurate than privately owned (median accuracy score, 3.5 [IQR, 1.5-4]) and media (median accuracy score, 4 [IQR, 2-4]) websites (P < .004). Websites with higher accuracy were more difficult to read than websites with lower accuracy. CONCLUSIONS AND RELEVANCE: Online information on pancreatic cancer overestimates the reading ability of the overall population and lacks accurate information about alternative therapy. In the absence of quality control on the Internet, physicians should provide guidance to patients in the selection of online resources with readable and accurate information.
Subject(s)
Comprehension , Consumer Health Information/standards , Internet/organization & administration , Internet/standards , Pancreatic Neoplasms/therapy , Academic Medical Centers , Clinical Trials as Topic , Complementary Therapies , Government , Humans , Information Dissemination , Mass Media , Organizations, Nonprofit , Ownership , Patient Education as Topic/standards , United StatesABSTRACT
INTRODUCCIÓN: Internet se ha convertido en uno de los medios más importantes al alcance de las gestantes para consultar información relativa a su embarazo. La calidad de los contenidos de las páginas web que consultan se convierte así en un punto crítico que debe ser tenido en cuenta por la matrona de atención primaria y especializada. OBJETIVO: Analizar la calidad de los sitios web con información sanitaria obstétrica relacionada con los procesos de embarazo, parto y puerperio que existen actualmente en internet y en idioma español, y obtener un ranking de calidad de las 10 mejores webs en español orientadas a las gestantes para que puedan ser recomendadas por los profesionales sanitarios. MATERIALES Y MÉTODO: Se realizó una búsqueda bibliográfica utilizando las siguientes palabras clave: «páginas web sanitarias», «criterios de calidad», «internet», «toma de decisiones de la gestante» y «nuevas tecnologías». Se utilizaron tres herramientas convenientemente ponderadas (cuestionario de Bermúdez-Tamayo, test de accesibilidad HERA y PageRank de Google) para clasificar la calidad de las páginas web analizadas. De los resultados obtenidos, se extrajeron las webs con mejor puntuación y dedicadas expresamente a las gestantes. Se utilizaron dos métodos diferentes para obtener las páginas web: panel de expertos y análisis de los 100 primeros resultados obtenidos de las palabras clave indicadas en buscadores comerciales. RESULTADOS: Se encontraron 61 páginas web aptas para el estudio, y de ellas las 10 específicas para las embarazadas puntuaron por encima del percentil 50 (el 40% superior al percentil 75). CONCLUSIONES: Las 10 páginas web obtenidas presentan una calidad media-alta, aunque dado el carácter cambiante y caótico de internet es necesario realizar evaluaciones periódicas de las webs para vigilar continuamente el cumplimiento de los criterios de calidad
INTRODUCTION: Internet has become one of the most important means available to the pregnant to view information about your pregnancy. The quality of the contents of the web pages you visit thus becomes a critical point to be considered by the midwifes of primary and specialized care. OBJECTIVE: To evaluate and get a quality ranking of the top 10 websites in Spanish aimed at pregnant women so that they can be recommended by health professionals. MATERIALS AND METHODS: A literature search was performed using the following keywords: health websites, quality criteria, Internet, decision making of pregnant women and new technologies. Three tools appropriately weighted (Berm0dez-Tamayo Questionnaire, HERA Test Accessibility and Google PageRank) was used to grade the quality of the websites analyzed. From the results the websites rated extracted and expressly dedicated to pregnant women. Two different methods were used for web pages; panel of experts and study more brainstorming and analysis of the first 100 results for keywords in commercial search engines. RESULTS: 61 suitable for the study and of them specific to pregnant 10 sites all scored above the 5Oth percentile, 40% above the 75. CONCLUSIONS: The 10 sites obtained have a medium-high quality though given the changing and chaotic nature of Internet is necessary evaluations of temporary sites to continuously monitor compliance with the quality criteria
Subject(s)
Humans , Female , Consumer Health Information/standards , Patient Education as Topic/methods , Birthing Centers/organization & administration , Midwifery , Social Media , Webcasts as Topic/standards , Pregnancy Complications/prevention & control , Information Technology/analysisABSTRACT
BACKGROUND: The use of complementary/alternative medicine has garnered rising interest in recent years. Natural products including herbs, vitamins, and minerals are the most popularly consumed. The Internet is a ubiquitous source of information/market for these supplements. AIM: To systematically evaluate the dietary and herbal supplement recommended for patients with CKD and ESRD on the Internet, and try to distinguish between the claim of the manufacturer and proven scientific data. METHODS: A questionnaire assessing each website was formulated. Each product ingredient was recorded in the questionnaire by two independent reviewers and statistically analyzed. RESULTS: Of the 184 websites, 28% claimed to decrease CKD progression, 60% did not advise to consult a doctor before taking the supplement, and >90% did not mention any potential drug interaction, disease interaction, or caution in use during pregnancy or in children. The ten common plant ingredients claiming to be beneficial in kidney diseases were uva ursi, dandelion, parsley, corn silk, juniper, celery, buchu, horsetail, marshmallow, and stinging nettle. In contrast to their claims, these substances were not adequately studied in humans. The available animal studies showed detrimental effects and potential drug interactions with commonly used medications in the CKD/ESRD population. CONCLUSIONS: Nephrologists need to be cognizant of the lack of substantiated proven benefits of these substances and of the potential adverse effects in the animal models that can translate to the patients. Most importantly, the policy needs to change regarding the regulation of these products to prevent patient harm and misinformation.