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Weddell J, Jawad D, Buckley T, Redfern J, Mansur Z, Elliott N, Hanson CL, Gallagher R. Online information for spontaneous coronary artery dissection (SCAD) survivors and their families: A systematic appraisal of content and quality of websites. Int J Med Inform 2024; 184:105372. [PMID: 38350180 DOI: 10.1016/j.ijmedinf.2024.105372] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/20/2023] [Revised: 01/11/2024] [Accepted: 02/04/2024] [Indexed: 02/15/2024]
Abstract
BACKGROUND Spontaneous coronary artery dissection (SCAD) survivors often seek information online. However, the quality and content of websites for SCAD survivors is uncertain. This review aimed to systematically identify and appraise websites for SCAD survivors. METHODS A systematic review approach was adapted for websites. A comprehensive search of SCAD key-phrases was performed using an internet search engine during January 2023. Websites targeting SCAD survivors were included. Websites were appraised for quality using Quality Component Scoring System (QCSS) and Health Related Website Evaluation Form (HRWEF), suitability using the Suitability Assessment Method (SAM), readability using a readability generator, and interactivity. Content was appraised using a tool based on SCAD international consensus literature. Raw scores from tools were concerted to percentages, then classified variably as excellent through to poor. RESULTS A total of 50 websites were identified and included from 600 screened. Overall, content accuracy/scope (53.3 ± 23.3) and interactivity (67.1 ± 11.5) were poor, quality was fair (59.1 ± 22.3, QCSS) and average (83.1 ± 5.8, HRWEF) and suitability was adequate (54.9 ± 13.8, SAM). The mean readability grade was 11.6 (±2.3), far exceeding the recommendations of ≤ 8. By website type, survivor affiliated and medically peer-reviewed health information websites scored highest. Appraisal tools had limitations, such as overlapping appraisal of similar things and less relevant items due to internet modernity. CONCLUSION Many online websites are available for SCAD survivors, but often have limited and/or inaccurate content, poor quality, are not tailored to the demographic, and are difficult to read. Appraisal tools for health website require consolidation and further development.
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Affiliation(s)
- Joseph Weddell
- Sydney Nursing School, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia; Charles Perkins Centre, The University of Sydney, Sydney, Australia.
| | - Danielle Jawad
- Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia; Health Promotion Unit, Population Health Research & Evaluation Hub, Sydney Local Health District, Sydney, Australia
| | - Thomas Buckley
- Sydney Nursing School, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia; Charles Perkins Centre, The University of Sydney, Sydney, Australia
| | - Julie Redfern
- Charles Perkins Centre, The University of Sydney, Sydney, Australia; Sydney School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia
| | - Zarin Mansur
- Sydney Nursing School, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia; Charles Perkins Centre, The University of Sydney, Sydney, Australia
| | - Natalie Elliott
- School of Health and Social Care, Edinburgh Napier University, Edinburgh, UK
| | - Coral L Hanson
- School of Health and Social Care, Edinburgh Napier University, Edinburgh, UK
| | - Robyn Gallagher
- Sydney Nursing School, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia; Charles Perkins Centre, The University of Sydney, Sydney, Australia
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Huisman D, Burrows T, Sweeney L, Bannister K, Moss-Morris R. 'Symptom-free' when inflammatory bowel disease is in remission: Expectations raised by online resources. PATIENT EDUCATION AND COUNSELING 2024; 119:108034. [PMID: 37952400 DOI: 10.1016/j.pec.2023.108034] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 07/12/2023] [Revised: 10/03/2023] [Accepted: 10/24/2023] [Indexed: 11/14/2023]
Abstract
OBJECTIVES Up to 60% of patients with inflammatory bowel disease (IBD) experience symptoms when in remission. Qualitative research suggests patients seldom feel they receive adequate explanations for these. This study explores how, and how often, ongoing symptoms during remission are represented on readily searchable patient websites. METHODS Bing, Google, and Yahoo were searched for websites providing medical information about IBD. Thematic analysis was used to inductively explore themes around symptoms during quiescent IBD, followed by deductive content analysis to quantify core themes. RESULTS Results indicated that remission is commonly defined as "few or no symptoms" and that there is limited information available on symptoms during remission. 55.6% of IBD websites provided a definition of remission based on symptom control only, while 44.4% also incorporated inflammatory control. The few websites that mentioned that symptoms may continue during remission (21.7%) related these to IBS. CONCLUSIONS Current website information is predominantly biomedical and fails to adequately explain how symptoms may persist during remission and how IBS and IBD may be linked. PRACTICE IMPLICATIONS Lack of explanatory models of symptoms in remission may lead to distress and increase anxiety about symptoms. Clearer explanations of these symptoms are needed.
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Affiliation(s)
| | - Taylor Burrows
- Health Psychology Section, King's College London, London, UK
| | - Louise Sweeney
- Health Psychology Section, King's College London, London, UK
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Khan F, Norton C, Czuber-Dochan W. Knowledge and Attitude of Inflammatory Bowel Disease Patients Toward Colorectal Cancer Risk, Its Management, and the Role of Healthcare Providers: A Cross-Sectional Study in the UK. CROHN'S & COLITIS 360 2023; 5:otad067. [PMID: 37941595 PMCID: PMC10629216 DOI: 10.1093/crocol/otad067] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/14/2023] [Indexed: 11/10/2023] Open
Abstract
Background Inflammatory bowel disease (IBD) increases the risk for colorectal cancer (CRC). Limited literature exists on patients' knowledge of CRC risk and management. Attitude toward doctor-recommended management and the role of healthcare providers (HCPs) in CRC risk awareness remain unexplored. This study aimed to fill the gap in knowledge about CRC risk awareness and management in IBD patients in the UK. Methods This cross-sectional internet-based study was conducted in April-July 2019. Adult (>18 years) IBD patients with a confirmed diagnosis for 2 years and adequate command of English language were invited from non-Natinal Health Services sources. A self-designed and piloted questionnaire with open- and closed-ended questions was used. Closed-ended data were analyzed using descriptive statistics and open-ended responses were analyzed using content analysis. Results Ninety-two participants (52.5% Crohn's disease and 67.5% females) responded. Around 88% knew that IBD increased CRC risk. Only 20.7% were aware of colonoscopy as the best screening tool; 88% were unaware of screening initiation time. Almost 90% would agree to a doctor's recommendation of colonoscopy. For dysplasia with 10% risk of CRC, 46.7% would not agree with colectomy. Some 48% reported to have never had a discussion about the risk of CRC in IBD with their HCPs, while 58% were not informed of the role of screening and surveillance in managing CRC risk. Conclusions IBD patients were poorly aware of CRC risk management and had mixed willingness to comply with a doctor's recommendation. HCP's role in cancer knowledge dissemination was suboptimal and patients desired more information.
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Affiliation(s)
- Fiza Khan
- Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King’s College London, London, UK
| | - Christine Norton
- Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King’s College London, London, UK
| | - Wladyslawa Czuber-Dochan
- Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King’s College London, London, UK
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Bernstein MT, Reynolds KA, Jakobson LS, Petty SK, Pryor TAM, Stoesz BM, Alcolado GM, Furer P. Do anxiety websites have the answers people are looking for? PATIENT EDUCATION AND COUNSELING 2022; 105:933-941. [PMID: 34404559 DOI: 10.1016/j.pec.2021.08.002] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 08/30/2020] [Revised: 07/09/2021] [Accepted: 08/02/2021] [Indexed: 06/13/2023]
Abstract
UNLABELLED OBJECTIVES AND METHODS: A wealth of online anxiety information exists but much of it is not evidence-based or well-balanced. This study evaluated anxiety websites (N = 20) on readability, quality, usability, visual design, and content. RESULTS Overall, websites were of reasonable quality but only half were considered understandable according to the PEMAT usability scale (70% cutoff value). The average reading level across websites was 11.2 (SMOG), which is higher than NIH recommended grade 6-7 level. Websites had variable design features and a trending association suggested websites with better design come up earlier in search results. The number of topics covered varied across websites and most did not adequately cover all topics of interest. Most websites included information about psychological and self-help treatments, how treatment works, and what treatment entails. The Top 5 websites were: (1) Anxiety BC, (2) ADAA, (3) Mind, (4) Beyond Blue, and (5) Web MD. CONCLUSIONS This is the first study to evaluate existing anxiety information websites based on the dimensions described above and their relationship to Google search results. PRACTICE IMPLICATIONS This study highlights the importance of considering several dimensions in developing mental health resources and provides direction for strategies to improve existing websites and/or develop new resources.
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Affiliation(s)
| | | | - Lorna S Jakobson
- Department of Psychology, University of Manitoba, Winnipeg, MB, Canada
| | - Sarah K Petty
- Department of Psychology, University of Manitoba, Winnipeg, MB, Canada
| | - Teaghan A M Pryor
- Department of Psychology, University of Manitoba, Winnipeg, MB, Canada
| | - Brenda M Stoesz
- Department of Psychology, University of Manitoba, Winnipeg, MB, Canada; Centre for the Advancement of Teaching and Learning, University of Manitoba, Winnipeg, MB, Canada
| | - Gillian M Alcolado
- Department of Clinical Health Psychology, University of Manitoba, Winnipeg, MB, Canada
| | - Patricia Furer
- Department of Clinical Health Psychology, University of Manitoba, Winnipeg, MB, Canada
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Nanda JK, Hay JL, Marchetti MA. Analysis of Keywords Used in Internet Searches for Melanoma Information: Observational Study. JMIR DERMATOLOGY 2021; 4:e25720. [PMID: 36936812 PMCID: PMC10018754 DOI: 10.2196/25720] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/13/2022] Open
Abstract
Background The internet is an accessible resource for health care information and is often used by patients to learn about melanoma. The keywords that are used in internet searches can reflect internet users' interest in specific topics and the public's awareness of health-related issues. Objective This study aims to describe the most frequently used keywords, questions, and corresponding websites in internet searches for melanoma. Methods This is an observational study using data retrieved from Google Trends, Alexa Internet, SEMrush, Ahrefs, and SE Ranking for the keywords "melanoma" and "skin cancer." Results Average search interest as per Google Trends was greater for the keyword "skin cancer" than for the keyword "melanoma." Searches for the top 25 keywords in 3 databases resulted in 34 unique melanoma keywords and 33 unique skin cancer keywords. Melanoma keywords were most frequently related to clinicopathologic classification (n=11, 32%), and skin cancer keywords were most frequently about diagnosis (n=14, 42%). Questions about the prognosis of melanoma appeared most frequently among the most popular melanoma questions, but general questions or questions about the diagnosis of melanoma contributed the greatest proportion of searches by search volume. Skin cancer question searches were most commonly about diagnosis. The highest proportion of searches for popular melanoma and skin cancer keywords most frequently sent traffic to websites from nonprofit organizations and media companies, respectively. Conclusions We identified common keywords, questions, and websites used to access information about melanoma on the internet. These data may help health care providers and public health professionals when educating and counseling patients and the public about skin cancer.
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Affiliation(s)
- Japbani K Nanda
- Dermatology Service, Department of Medicine, Memorial Sloan Kettering Cancer Center, New York, NY, United States
| | - Jennifer L Hay
- Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, United States
| | - Michael A Marchetti
- Dermatology Service, Department of Medicine, Memorial Sloan Kettering Cancer Center, New York, NY, United States
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Bernstein MT, Garber J, Faucher P, Reynolds KA, Restall G, Walker JR, Singh H. New Patient Education Video on Colonoscopy Preparation: Development and Evaluation Study. JMIR Hum Factors 2020; 7:e15353. [PMID: 33084594 PMCID: PMC7641787 DOI: 10.2196/15353] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/08/2019] [Revised: 02/20/2020] [Accepted: 09/11/2020] [Indexed: 12/27/2022] Open
Abstract
BACKGROUND Although several patient education materials on colonoscopy preparation exist, few studies have evaluated or compared them; hence, there is no professional consensus on recommended content or media to use. OBJECTIVE This study aims to address this need by developing and evaluating a new video on colonoscopy preparation. METHODS We developed a new video explaining split-dose bowel preparation for colonoscopy. Of similar content videos on the internet (n=20), the most favorably reviewed video among patient and physician advisers was used as the comparator for the study. A total of 232 individuals attending gastroenterology or urology clinics reviewed the new and comparator videos. The order of administration of the new and comparator videos was randomly counterbalanced to assess the impact of presentation order. Respondents rated each video on the following dimensions: information amount, clarity, trustworthiness, understandability, new or familiar information, reassurance, information learned, understanding from the patient's point of view, appeal, and the likelihood of recommending the video to others. RESULTS Overall, 71.6% (166/232) of the participants preferred the new video, 25.0% (58/232) preferred the comparator video, and 3.4% (8/232) were not sure. Furthermore, 64.0% (71/111) of those who viewed the new video first preferred it, whereas 77.7% (94/121) of the participants who viewed the new video second preferred it. Multivariable logistic regression analysis also demonstrated that participants were more likely to prefer the new video if they had viewed it second. Participants who preferred the new video rated it as clearer and more trustworthy than those who preferred the comparator video. CONCLUSIONS This study developed and assessed the strengths of a newly developed colonoscopy educational video.
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Affiliation(s)
| | - Jesse Garber
- IBD Clinical and Research Centre, University of Manitoba, Winnipeg, MB, Canada
| | - Patrick Faucher
- George and Fay Yee Centre for Healthcare Innovation, Winnipeg, MB, Canada
| | | | - Gayle Restall
- Department of Occupational Therapy, University of Manitoba, Winnipeg, MB, Canada
| | - John R Walker
- Department of Psychology, University of Manitoba, Winnipeg, MB, Canada
| | - Harminder Singh
- IBD Clinical and Research Centre, University of Manitoba, Winnipeg, MB, Canada
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Yin R, Neyens DM. Online Health Resource Use by Individuals With Inflammatory Bowel Disease: Analysis Using the National Health Interview Survey. J Med Internet Res 2020; 22:e15352. [PMID: 32969831 PMCID: PMC7545328 DOI: 10.2196/15352] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/03/2019] [Revised: 01/28/2020] [Accepted: 07/26/2020] [Indexed: 02/07/2023] Open
Abstract
Background The internet has enabled convenient and efficient health information searching which is valuable for individuals with chronic conditions requiring some level of self-management. However, there is little research evaluating what factors may impact the use of the internet for health-related tasks for specific clinical populations, such as individuals with inflammatory bowel diseases. Objective Our goal was to investigate the factors that influence internet use in acquiring health information by individuals with inflammatory bowel diseases. Specifically, we identified factors associated with internet searching behavior and using the internet for completing health-related tasks. Methods We used 2016 National Health Interview Survey weighted data to develop logistic regression models to predict the likelihood that individuals with inflammatory bowel diseases would use the internet for 2 types of tasks: seeking health information through online searches and using the internet to perform health-related tasks including scheduling appointments and emailing care providers. Results 2016 National Health Interview Survey weighted data include more than 3 million weighted adult respondents with inflammatory bowel diseases (approximately 1.29% of adults in the weighted data set). Our results suggest that approximately 66.3% of those with inflammatory bowel diseases reported using the internet at least once a day, and approximately 14.7% reported being dissatisfied with their current health care. About 62.3% of those with inflammatory bowel diseases reported that they had looked up health information online, 16.3% of those with inflammatory bowel diseases reported that they had scheduled an appointment with a health care provider online, and 21.6% reported having used a computer to communicate with a health provider by email. We found that women who were self-regulating their care were more likely to look up health information online than others. Both middle-aged and older adults with inflammatory bowel diseases who were unsatisfied with their current health care were less likely to look up health information online. Frequent internet users who were worried about medical costs were more likely to look up health information online. Similarly, the results from our statistical models suggest that individuals with inflammatory bowel diseases who were frequent internet users were more likely to use the internet for specific health-related tasks. Additionally, women with inflammatory bowel diseases who reported being married were less likely to use the internet for specific health-related tasks. Conclusions For those with inflammatory bowel diseases, there are additional socioeconomic and behavioral factors that impact the use of the internet for health information and health-related tasks. Future research should evaluate how these factors moderate the use of the internet and identify how online resources can support clinical populations in ways that improve access to information, support health self-management, and subsequently improve health outcomes.
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Affiliation(s)
- Rong Yin
- Department of Industrial Engineering, Clemson University, Clemson, SC, United States
| | - David M Neyens
- Department of Industrial Engineering, Clemson University, Clemson, SC, United States
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Adaptation of TECCU App Based on Patients´ Perceptions for the Telemonitoring of Inflammatory Bowel Disease: A Qualitative Study Using Focus Groups. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2020; 17:ijerph17061871. [PMID: 32183103 PMCID: PMC7143635 DOI: 10.3390/ijerph17061871] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 12/31/2019] [Revised: 03/06/2020] [Accepted: 03/10/2020] [Indexed: 01/18/2023]
Abstract
Background: Despite the continuous adaptation of eHealth systems for patients with inflammatory bowel disease (IBD), a significant disconnection persists between users and developers. Since non-adherence remains high, it is necessary to better understand the patients’ perspective on telemonitoring for IBD. Accordingly, this study aimed to adapt the TECCU telemonitoring app to the preferences and needs of IBD patients. Methods: A qualitative study was carried out using successive focus groups of IBD patients. Meetings were audio-recorded and a thematic analysis was employed until data saturation was achieved. The first group included patients who had used the TECCU App in a pilot clinical trial, and subsequent meetings included patients with Crohn’s disease and ulcerative colitis recruited from the Spanish Confederation of patient associations. The information collected at each meeting guided consecutive changes to the platform. Results: Data saturation was reached after three focus groups involving a total of 18 patients. Three main themes emerged: (1) platform usability, (2) the communication process, and (3) platform content. All participants indicated that TECCU is easy to use, permitting continuous and personalized feedback. According to patients´ perspectives, the platform was adapted to foster a flexible follow-up and shared decision-making using open and safe communication networks. Many participants appreciated the educational elements and, consequently, the app was connected to reliable and continuously updated webpages. Conclusions: IBD patients valued the usability and personalized monitoring offered by the TECCU App. Improvements in the messaging system and continuously updated educational content were introduced to address patients´ needs and favor their engagement.
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Ansari M, Hamzehei R, Valizadeh-Haghi S. Persian language health websites on Ebola disease: less credible than you think? J Egypt Public Health Assoc 2020; 95:2. [PMID: 32813057 PMCID: PMC7364698 DOI: 10.1186/s42506-019-0027-4] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/05/2019] [Accepted: 09/21/2019] [Indexed: 11/10/2022]
Abstract
BACKGROUND Ebola virus disease is an emergency situation in the area of international public health for which currently, there is no standard treatment. Thus, there is an essential need for awareness of individuals about the Ebola disease and consequently its prevention. Internet and health websites are considered a source of health information about certain diseases. Therefore, in this study, the credibility of Persian-language websites on Ebola is assessed. MATERIALS AND METHODS The term "Ebola" was searched using the Yahoo, Google, and Bing search engines. The first 30 websites resulting from each search engine were studied. Persian language was a prerequisite for inclusion. Duplicate and inaccessible websites were excluded and 62 websites were retained for evaluation. These websites were manually assessed by the researchers. The research tool was HONcode official toolbar as well as the checklist set by the researchers based on the HONcode of Conduct tool. The data were analyzed using SPSS 18.0 software. RESULTS None of the retrieved websites was officially approved by the HONcode of Conduct. Moreover, the manual evaluation showed that none of them had fully considered the eight criteria of HONcode. The results showed that most of the retrieved websites (62%) were commercial. The justifiability criterion had been considered in 89% of the studied websites, but the authority criterion had been considered by only 16% of the websites. CONCLUSION AND RECOMMENDATIONS Regarding the poor reliability of Persian websites on the Ebola disease, and considering that Persian language people prefer to read the information in their native language, it is recommended that the authorized health organizations introduce reliable health websites in the Persian language. This will help them to take part in active healthcare decision-making and disease prevention. Moreover, it is necessary to educate people especially Persian language ones about the website evaluation tools, which can be used to assess the credibility of health websites before consuming the information on those websites.
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Affiliation(s)
- Masoumeh Ansari
- Clinical Research Development Unit, Kowsar Hospital, Kurdistan University of Medical Sciences, Sanandaj, Iran
| | - Ronak Hamzehei
- Clinical Research Development Unit of Shahid Beheshti Hospital, Hamadan University of Medical Sciences, Hamadan, Iran
| | - Saeideh Valizadeh-Haghi
- Department of Medical Library and Information Sciences, School of Allied Medical Sciences, Shahid Beheshti University of Medical Sciences, Tehran, Iran
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Dzubur E, Khalil C, Almario CV, Noah B, Minhas D, Ishimori M, Arnold C, Park Y, Kay J, Weisman MH, Spiegel BMR. Patient Concerns and Perceptions Regarding Biologic Therapies in Ankylosing Spondylitis: Insights From a Large-Scale Survey of Social Media Platforms. Arthritis Care Res (Hoboken) 2019; 71:323-330. [PMID: 29781587 DOI: 10.1002/acr.23600] [Citation(s) in RCA: 23] [Impact Index Per Article: 3.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/20/2017] [Accepted: 05/15/2018] [Indexed: 12/25/2022]
Abstract
OBJECTIVE Few studies have examined ankylosing spondylitis (AS) patients' concerns about and perceptions of biologic therapies, apart from traditional surveys. In this study, we used social media data to examine the knowledge, attitudes, and beliefs of AS patients regarding biologic therapies. METHODS We collected posts published on 601 social media sites between January 1, 2016 and April 26, 2017. In each post, both an AS keyword and a biologic were mentioned. To explore themes within the collection of posts in an unsupervised manner, a latent Dirichlet allocation topic model was fit to the data set. Each discovered topic was represented as a discrete distribution over the words in the collection, similar to a word cloud. The topics were manually reviewed to identify themes, which were confirmed using thematic data analysis. RESULTS We examined 27,416 social media posts and identified 112 themes. The majority of themes (n = 67 [60%]) focused on discussions related to AS treatment. Other themes, including the psychological impact of AS, reporting of medical literature, and AS disease consequences, accounted for the remaining 40% (n = 45). In discussions regarding AS treatment, most topics involved biologics, and most subthemes involved side effects (e.g., fatigue, allergic reactions), biologic treatment attributes (e.g., dosing, frequency), and concerns about use of biologics (e.g., increased cancer risk). Additional implicit patient needs (e.g., support) were identified using qualitative analyses. CONCLUSION Social media revealed a dynamic range of themes governing AS patients' experience with and choice of biologic agents. The complexity of selecting biologics from among many such agents and navigating their risk/benefit profiles suggests the merit of creating online tools tailored to support patients' decision-making with regard to biologic therapies for AS.
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Affiliation(s)
- Eldin Dzubur
- Cedars-Sinai Medical Center, Los Angeles, California
| | - Carine Khalil
- Cedars-Sinai Medical Center and Cedars-Sinai Center for Outcomes Research and Education, Los Angeles, California
| | - Christopher V Almario
- Cedars-Sinai Medical Center and Cedars-Sinai Center for Outcomes Research and Education, Los Angeles, California
| | - Benjamin Noah
- Cedars-Sinai Medical Center and Cedars-Sinai Center for Outcomes Research and Education, Los Angeles, California
| | - Deeba Minhas
- Cedars-Sinai Medical Center, Los Angeles, California
| | | | - Corey Arnold
- Medical Imaging Informatics, University of California, Los Angeles
| | - Yujin Park
- Novartis Pharmaceuticals Corporation, East Hanover, New Jersey
| | - Jonathan Kay
- University of Massachusetts Memorial Medical Center and University of Massachusetts Medical School, Worcester
| | | | - Brennan M R Spiegel
- Cedars-Sinai Medical Center and Cedars-Sinai Center for Outcomes Research and Education, Los Angeles, California
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Yin AL, Hachuel D, Pollak JP, Scherl EJ, Estrin D. Digital Health Apps in the Clinical Care of Inflammatory Bowel Disease: Scoping Review. J Med Internet Res 2019; 21:e14630. [PMID: 31429410 PMCID: PMC6718080 DOI: 10.2196/14630] [Citation(s) in RCA: 63] [Impact Index Per Article: 10.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/09/2019] [Revised: 07/02/2019] [Accepted: 07/04/2019] [Indexed: 12/12/2022] Open
Abstract
BACKGROUND Digital health is poised to transform health care and redefine personalized health. As Internet and mobile phone usage increases, as technology develops new ways to collect data, and as clinical guidelines change, all areas of medicine face new challenges and opportunities. Inflammatory bowel disease (IBD) is one of many chronic diseases that may benefit from these advances in digital health. This review intends to lay a foundation for clinicians and technologists to understand future directions and opportunities together. OBJECTIVE This review covers mobile health apps that have been used in IBD, how they have fit into a clinical care framework, and the challenges that clinicians and technologists face in approaching future opportunities. METHODS We searched PubMed, Scopus, and ClinicalTrials.gov to identify mobile apps that have been studied and were published in the literature from January 1, 2010, to April 19, 2019. The search terms were ("mobile health" OR "eHealth" OR "digital health" OR "smart phone" OR "mobile app" OR "mobile applications" OR "mHealth" OR "smartphones") AND ("IBD" OR "Inflammatory bowel disease" OR "Crohn's Disease" (CD) OR "Ulcerative Colitis" (UC) OR "UC" OR "CD"), followed by further analysis of citations from the results. We searched the Apple iTunes app store to identify a limited selection of commercial apps to include for discussion. RESULTS A total of 68 articles met the inclusion criteria. A total of 11 digital health apps were identified in the literature and 4 commercial apps were selected to be described in this review. While most apps have some educational component, the majority of apps focus on eliciting patient-reported outcomes related to disease activity, and a few are for treatment management. Significant benefits have been seen in trials relating to education, quality of life, quality of care, treatment adherence, and medication management. No studies have reported a negative impact on any of the above. There are mixed results in terms of effects on office visits and follow-up. CONCLUSIONS While studies have shown that digital health can fit into, complement, and improve the standard clinical care of patients with IBD, there is a need for further validation and improvement, from both a clinical and patient perspective. Exploring new research methods, like microrandomized trials, may allow for more implementation of technology and rapid advancement of knowledge. New technologies that can objectively and seamlessly capture remote data, as well as complement the clinical shift from symptom-based to inflammation-based care, will help the clinical and health technology communities to understand the full potential of digital health in the care of IBD and other chronic illnesses.
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Affiliation(s)
- Andrew Lukas Yin
- Medical College, Weill Cornell Medicine, New York, NY, United States
- Cornell Tech, New York, NY, United States
| | - David Hachuel
- Cornell Tech, New York, NY, United States
- augGI Technologies, New York, NY, United States
| | | | - Ellen J Scherl
- Jill Roberts Center for Inflammatory Bowel Disease, Weill Cornell Medicine, New York, NY, United States
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Daher S, Khoury T, Benson A, Walker JR, Hammerman O, Kedem R, Naftali T, Eliakim R, Ben-Bassat O, Bernstein CN, Israeli E. Inflammatory bowel disease patient profiles are related to specific information needs: A nationwide survey. World J Gastroenterol 2019; 25:4246-4260. [PMID: 31435177 PMCID: PMC6700696 DOI: 10.3748/wjg.v25.i30.4246] [Citation(s) in RCA: 20] [Impact Index Per Article: 3.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/18/2019] [Revised: 06/09/2019] [Accepted: 06/22/2019] [Indexed: 02/06/2023] Open
Abstract
BACKGROUND Inflammatory bowel diseases (IBD) is a heterogenous, lifelong disease, with an unpredictable and potentially progressive course, that may impose negative psychosocial impact on patients. While informed patients with chronic illness have improved adherence and outcomes, previous research showed that the majority of IBD patients receive insufficient information regarding their disease. The large heterogeneity of IBD and the wide range of information topics makes a one-size fits all knowledge resource overwhelming and cumbersome. We hypothesized that different patient profiles may have different and specific information needs, the identification of which will allow building personalized computer-based information resources in the future. AIM To evaluate the scope of disease-related knowledge among IBD patients and determine whether different patient profiles drive unique information needs. METHODS We conducted a nationwide survey addressing hospital-based IBD clinics. A Total of 571 patients completed a 28-item questionnaire, rating the amount of information received at time of diagnosis and the importance of information, as perceived by participants, for a newly diagnosed patient, and for the participants themselves, at current time. We performed an exploratory factor analysis of the crude responses aiming to create a number of representative knowledge domains (factors), and analyzed the responses of a set of 15 real-life patient profiles generated by the study team. RESULTS Participants gave low ratings for the amount of information received at disease onset (averaging 0.9/5) and high ratings for importance, both for the newly diagnosed patients (mean 4.2/5) and for the participants themselves at current time (mean 3.5/5). Factor analysis grouped responses into six information-domains. The responses of selected profiles, compared with the rest of the participants, yielded significant associations (defined as a difference in rating of > 0.5 points with a P < 0.05). Patients with active disease showed a higher interest in work-disability, stress-coping, and therapy-complications. Patients newly diagnosed at age > 50, and patients with long-standing disease (> 10 years) showed less interest in work-disability. Patients in remission with mesalamine or no therapy showed less interest in all domains except for nutrition and long-term complications. CONCLUSION We demonstrate unmet patient information needs. Analysis of various patient profiles revealed associations with specific information topics, paving the way for building patient-tailored information resources.
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Affiliation(s)
- Saleh Daher
- Institute of Gastroenterology and Liver Diseases, Hadassah-Hebrew University Medical Center, Jerusalem 91120, Israel
| | - Tawfik Khoury
- Institute of Gastroenterology and Liver Diseases, Hadassah-Hebrew University Medical Center, Jerusalem 91120, Israel
- Department of Gastroenterology, Galilee Medical Center, Faculty of Medicine in the Galilee, Bar-Ilan University, Nahariya 22100, Israel
| | - Ariel Benson
- Institute of Gastroenterology and Liver Diseases, Hadassah-Hebrew University Medical Center, Jerusalem 91120, Israel
| | - John R Walker
- IBD Clinical and Research Centre, University of Manitoba, Winnipeg, MB R3E3P4, Canada
| | - Oded Hammerman
- Institute of Gastroenterology and Liver Diseases, Hadassah-Hebrew University Medical Center, Jerusalem 91120, Israel
| | - Ron Kedem
- Research Branch, IDF Medical Corps, Tel-Hashomer, Ramat Gan 52630, Israel
| | - Timna Naftali
- Institute of Gastroenterology, Meir Medical Center, Kfar-saba 4428164, Israel
- Sackler School of Medicine, Tel-Aviv University, Tel-Aviv 6997801, Israel
| | - Rami Eliakim
- Sackler School of Medicine, Tel-Aviv University, Tel-Aviv 6997801, Israel
- Institute of Gastroenterology, Sheba Medical Center, Ramat-Gan 52630, Israel
| | - Ofer Ben-Bassat
- Institute of Gastroenterology, Rabin Medical Center, Petach-Tikva 49100, Israel
| | - Charles N Bernstein
- IBD Clinical and Research Centre, University of Manitoba, Winnipeg, MB R3E3P4, Canada
| | - Eran Israeli
- Institute of Gastroenterology and Liver Diseases, Hadassah-Hebrew University Medical Center, Jerusalem 91120, Israel
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Munsour EE, Awaisu A, Hassali MAA, Ali H, Dabbous Z. A comparative evaluation of written medicine information of antidiabetic medicines from Qatar, Australia and Europe. COGENT MEDICINE 2019. [DOI: 10.1080/2331205x.2019.1620904] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/22/2022] Open
Affiliation(s)
- Emad Eldin Munsour
- Pharmacy and Drug Control Department, Ministry of Public Health, Doha, Qatar
| | - Ahmed Awaisu
- College of Pharmacy, Qatar University, Doha, Qatar
| | | | - Hamda Ali
- Diabetes/Endocrinology, Hamad Medical Corporation, Doha, Qatar
| | - Zeinab Dabbous
- Diabetes/Endocrinology, Hamad Medical Corporation, Doha, Qatar
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14
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Hamzehei R, Ansari M, Rahmatizadeh S, Valizadeh-Haghi S. Websites as a tool for public health education: determining the trustworthiness of health websites on Ebola disease. Online J Public Health Inform 2018; 10:e221. [PMID: 30680054 PMCID: PMC6335090 DOI: 10.5210/ojphi.v10i3.9544] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/24/2022] Open
Abstract
OBJECTIVES Health service providers use internet as a tool for the spreading of health information and people often go on the web to acquire information about a disease. A wide range of information with varying qualities and by authors with varying degrees of credibility has thus become accessible by the public. Most people believe that the health information available on the internet is reliable. This issue reveals the need for having a critical view of the health information available online that is directly related to people's life. The Ebola epidemic is an emergency situation in the international public health domain and the internet is regarded as an important source for obtaining information on this disease. Given the absence of studies on the trustworthiness of health websites on Ebola, the present study was conducted to assess the trustworthiness of websites which are focused on this disease. METHODS The term "Ebola" was searched in Google, Yahoo and Bing search engines. Google Chrome browser was used for this purpose with the settings fixed on yielding 10 results per page. The first 30 English language websites in each of the three search engines were evaluated manually by using the HONcode of conduct tool. Moreover, the official HONcode toolbar was used to identify websites that had been officially certified by HON foundation. Results: Almost the half of the retrieved websites were commercial (49%). Complementarity was the least-observed criterion (37%) in all the websites retrieved from all three-search engines. Justifiability, Transparency and Financial Disclosure had been completely observed (100%). DISCUSSION The present study showed that only three criteria (Justifiability, Transparency and Financial Disclosure) out of the eight HON criteria were observed in the examined websites. Like other health websites, the websites concerned with Ebola are not reliable and should be used with caution. CONCLUSION Considering the lack of a specific policy about the publication of health information on the web, it is necessary for healthcare providers to advise their patients to use only credible websites. Furthermore, teaching them the criteria for assessing the trustworthiness of health websites would be helpful.
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Affiliation(s)
- Ronak Hamzehei
- Clinical Research Development Unit of Shahid Beheshti
hospital, Hamadan University of Medical Sciences,
Hamadan, Iran
| | - Masoumeh Ansari
- Medical Educational and Therapeutic center of Kowsar,
Kurdistan University of Medical Sciences,
Sanandaj, Iran
| | - Shahabedin Rahmatizadeh
- Department of Health Information Technology and
Management, School of Allied Medical Sciences, Shahid Beheshti
University of Medical Sciences, Tehran,
Iran
| | - Saeideh Valizadeh-Haghi
- Department of Medical Library and Information
Sciences, School of Allied Medical Sciences, Shahid Beheshti
University of Medical Sciences, Tehran,
Iran
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15
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Szeto W, van der Bent A, Petty CR, Reich J, Farraye F, Fishman LN. Use of Social Media for Health-Related Tasks by Adolescents With Inflammatory Bowel Disease: A Step in the Pathway of Transition. Inflamm Bowel Dis 2018; 24:1114-1122. [PMID: 29788360 PMCID: PMC6093193 DOI: 10.1093/ibd/izy021] [Citation(s) in RCA: 16] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/20/2017] [Indexed: 02/07/2023]
Abstract
BACKGROUND Social media is commonly used among the adolescent and young adult population, including those with chronic diseases. For adults, these platforms have been shown to be a major source of health information. Our aims were to explore how youth with inflammatory bowel disease (IBD) use social media for (1) disease information gathering, (2) provider communication, (3) sense of belonging to the IBD community, (4) self-expression around IBD, and (5) disease management/monitoring. METHODS An anonymous and voluntary survey was administered to IBD patients age 12 to 25 years at a single center over 4 months. RESULTS Of 218 patients approached, there were 109 respondents. The mean age of the cohort (SD) was 18 (2.9) years, 65% were male, and 82% had Crohn's disease. Almost all patients accessed the Internet daily, but only 17% reported looking up information about IBD "always" or "often." Less than half (47%) turned to medical websites (WebMD or Crohn's and Colitis Foundation) for information. A small number (16%) connected with other IBD patients. Patients' preferred communication with provider was by e-mail (88%) compared with a phone call to the office (67%) or hospital website/patient portal (52%). Few patients used mobile applications to monitor symptoms (2%) or for medication reminders (9%), although there was professed interest. CONCLUSIONS Adolescents and young adults with IBD are less likely than adults to use social media for health-related activities. They prefer e-mail rather than oral communication between visits, and privacy seems to be less of a concern. Targeted education and skill building may be helpful for this transitioning population.
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Affiliation(s)
- Winnie Szeto
- Department of Internal Medicine, Section of Gastroenterology, Boston Medical Center, Boston, Massachusetts,Address correspondence to: Winnie Szeto, MD, Section of Gastroenterology, Boston Medical Center, 11 Nevins St., Suite 402 Brighton, MA 02135 ()
| | - Annelotte van der Bent
- Department of Pediatric Gastroenterology, VU University Medical Center, Amsterdam, the Netherlands
| | - Carter R Petty
- Institutional Centers for Clinical and Translational Research, Boston Children’s Hospital, Boston, Massachusetts
| | - Jason Reich
- Department of Internal Medicine, Section of Gastroenterology, Boston Medical Center, Boston, Massachusetts
| | - Francis Farraye
- Department of Internal Medicine, Section of Gastroenterology, Boston Medical Center, Boston, Massachusetts
| | - Laurie N Fishman
- Inflammatory Bowel Disease Center, Boston Children’s Hospital, Harvard Medical School, Boston, Massachusetts
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16
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Health Care Services in IBD: Factors Associated with Service Utilization and Preferences for Service Options for Routine and Urgent Care. Inflamm Bowel Dis 2017; 23:1461-1469. [PMID: 28816754 DOI: 10.1097/mib.0000000000001215] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/31/2023]
Abstract
BACKGROUND We aimed to explore factors associated with health service utilization and preference for services, including alternatives to attending the emergency department (ED) when experiencing mild to moderate or severe symptoms. METHODS A total of 1143 persons (46% response rate) aged 18 to 65 years in the population-based University of Manitoba IBD Research Registry participated in the survey. RESULTS Although 61% had a gastroenterologist, when experiencing active symptoms, only 29% felt they could call their gastroenterologist for an urgent appointment, and 42% could call their gastroenterologist for telephone advice. Nine percent of the respondents visited the ED in the previous year. If having severe symptoms, 48% said that they would attend the ED. Visits to the ED were related to higher bowel symptom severity and high health anxiety. When experiencing severe symptoms, women, persons with Crohn's disease and those with high health anxiety, indicated that they would be more likely to use the ED. Considering services which could be available in the future respondents indicated that if acutely symptomatic they would be very likely or likely to use the following services: phone contact with inflammatory bowel disease nurse (77%), phone contact with a gastroenterologist (75%), and going to a walk-in gastroenterology clinic (71%). CONCLUSIONS Persons with inflammatory bowel disease are receptive to options other than the ED when experiencing inflammatory bowel disease symptoms; however, attending the ED remains a prominent choice. Improved access to specialized care may improve timeliness of care and reduce ED attendance. Future research should include the impact of health anxiety on health care utilization.
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17
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Martinez B, Dailey F, Almario CV, Keller MS, Desai M, Dupuy T, Mosadeghi S, Whitman C, Lasch K, Ursos L, Spiegel BMR. Patient Understanding of the Risks and Benefits of Biologic Therapies in Inflammatory Bowel Disease: Insights from a Large-scale Analysis of Social Media Platforms. Inflamm Bowel Dis 2017; 23:1057-1064. [PMID: 28410343 DOI: 10.1097/mib.0000000000001110] [Citation(s) in RCA: 43] [Impact Index Per Article: 5.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/14/2022]
Abstract
BACKGROUND Few studies have examined inflammatory bowel disease (IBD) patients' knowledge and understanding of biologic therapies outside traditional surveys. Here, we used social media data to examine IBD patients' understanding of the risks and benefits associated with biologic therapies and how this affects decision-making. METHODS We collected posts from Twitter and e-forum discussions from >3000 social media sites posted between June 27, 2012 and June 27, 2015. Guided by natural language processing, we identified posts with specific IBD keywords that discussed the risks and/or benefits of biologics. We then manually coded the resulting posts and performed qualitative analysis using ATLAS.ti software. A hierarchical coding structure was developed based on the keyword list and relevant themes were identified through manual coding. RESULTS We examined 1598 IBD-related posts, of which 452 (28.3%) centered on the risks and/or benefits of biologics. There were 5 main themes: negative experiences and concerns with biologics (n = 247; 54.6%), decision-making surrounding biologic use (n = 169; 37.4%), positive experiences with biologics (n = 168; 37.2%), information seeking from peers (n = 125; 27.7%), and cost (n = 38; 8.4%). Posts describing negative experiences primarily commented on side effects from biologics, concerns about potential side effects and increased cancer risk, and pregnancy safety concerns. Posts on decision-making focused on nonbiologic treatment options, hesitation to initiate biologics, and concerns about changing or discontinuing regimens. CONCLUSIONS Social media reveals a wide range of themes governing patients' experience and choice with IBD biologics. The complexity of navigating their risk-benefit profiles suggests merit in creating online tailored decision tools to support IBD patients' decision-making with biologic therapies.
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Affiliation(s)
- Bibiana Martinez
- *Cedars-Sinai Center for Outcomes Research and Education (CS-CORE), Los Angeles, California; †Department of Medicine, Cedars-Sinai Medical Center, Los Angeles, California; ‡Department of Medicine, Division of Digestive and Liver Diseases, Cedars-Sinai Medical Center, Los Angeles, California; §Department of Medicine, Division of Health Services Research, Cedars-Sinai Medical Center, Los Angeles, California; and ‖Takeda Pharmaceuticals U.S.A., Inc., Deerfield, Illinois
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18
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Bernstein MT, Walker JR, Sexton KA, Katz A, Beatie BE. Gathering Opinions on Depression Information Needs and Preferences: Samples and Opinions in Clinic Versus Web-Based Surveys. JMIR Ment Health 2017; 4:e13. [PMID: 28438729 PMCID: PMC5422653 DOI: 10.2196/mental.7231] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/25/2016] [Revised: 03/08/2017] [Accepted: 03/14/2017] [Indexed: 12/24/2022] Open
Abstract
BACKGROUND There has been limited research on the information needs and preferences of the public concerning treatment for depression. Very little research is available comparing samples and opinions when recruitment for surveys is done over the Web as opposed to a personal invitation to complete a paper survey. OBJECTIVE This study aimed to (1) to explore information needs and preferences among members of the public and (2) compare Clinic and Web samples on sample characteristics and survey findings. METHODS Web survey participants were recruited with a notice on three self-help association websites (N=280). Clinic survey participants were recruited by a research assistant in the waiting rooms of a family medicine clinic and a walk-in medical clinic (N=238) and completed a paper version of the survey. RESULTS The Clinic and Web samples were similar in age (39.0 years, SD 13.9 vs 40.2 years, SD 12.5, respectively), education, and proportion in full time employment. The Clinic sample was more diverse in demographic characteristics and closer to the demographic characteristics of the region (Winnipeg, Canada) with a higher proportion of males (102/238 [42.9%] vs 45/280 [16.1%]) and nonwhites (Aboriginal, Asian, and black) (69/238 [29.0%] vs 39/280 [13.9%]). The Web sample reported a higher level of emotional distress and had more previous psychological (224/280 [80.0%] vs 83/238 [34.9%]) and pharmacological (202/280 [72.1%] vs 57/238 [23.9%]) treatment. In terms of opinions, most respondents in both settings saw information on a wide range of topics around depression treatment as very important including information about treatment choices, effectiveness of treatment, how long it takes treatment to work, how long treatment continues, what happens when treatment stops, advantages and disadvantages of treatments, and potential side effects. Females, respondents with a white background, and those who had received or felt they would have benefited from therapy in the past saw more information topics as very important. Those who had received or thought they would have benefited in the past from medication treatment saw fewer topics as important. Participants in both groups expressed an interest in receiving information through discussion with a counselor or a physician, through written brochures, or through a recommended website. CONCLUSIONS The recruitment strategies were helpful in obtaining opinions from members of the public with different concerns and perspectives, and the results from the two methods were complementary. Persons coping with emotional distress and individuals not specifically seeking help for depression would be interested in information to answer a wide range of important questions about depression treatment. The Clinic sample yielded more cultural diversity that is a closer match to the population. The Web sample was less costly to recruit and included persons who were most interested in receiving information.
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Affiliation(s)
- Matthew T Bernstein
- Faculty of Arts, Department of Psychology, University of Manitoba, Winnipeg, MB, Canada
| | - John R Walker
- Faculty of Health Sciences, Department of Clinical Health Psychology, University of Manitoba, Winnipeg, MB, Canada
| | - Kathryn A Sexton
- Faculty of Health Sciences, Department of Clinical Health Psychology, University of Manitoba, Winnipeg, MB, Canada
| | - Alan Katz
- Manitoba Centre for Health Policy, Department of Community Health Sciences, University of Manitoba, Winnipeg, MB, Canada
| | - Brooke E Beatie
- Faculty of Arts, Department of Psychology, University of Manitoba, Winnipeg, MB, Canada
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- Faculty of Health Sciences, Department of Clinical Health Psychology, University of Manitoba, Winnipeg, MB, Canada
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19
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Aleksova J, Kuczynska-Burggraf M, Ranasinha S, Vincent A. Information on early menopause: is the internet the place to search? Climacteric 2017; 20:248-255. [DOI: 10.1080/13697137.2017.1301920] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/19/2022]
Affiliation(s)
- J. Aleksova
- Department of Endocrinology, Monash Health, Clayton, Australia
- Centre for Endocrinology and Metabolism, Hudson Institute of Medical Research, Clayton, Victoria, Australia
- Department of Medicine, Monash University, Clayton, Victoria, Australia
| | | | - S. Ranasinha
- Monash Centre for Health Research and Implementation, School of Public Health and Preventive Medicine, Monash University, Clayton, Victoria, Australia
| | - A. Vincent
- Department of Endocrinology, Monash Health, Clayton, Australia
- Monash Centre for Health Research and Implementation, School of Public Health and Preventive Medicine, Monash University, Clayton, Victoria, Australia
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20
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Lussiez AD, Burdick S, Kodali S, Rubio G, Mack JA, Lin J, Chang AC, Reddy RM. Internet Usage Trends in Thoracic Surgery Patients and Their Caregivers. JOURNAL OF CANCER EDUCATION : THE OFFICIAL JOURNAL OF THE AMERICAN ASSOCIATION FOR CANCER EDUCATION 2017; 32:91-96. [PMID: 26511536 DOI: 10.1007/s13187-015-0934-9] [Citation(s) in RCA: 11] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 06/05/2023]
Abstract
With trends toward increasing patient involvement in medical decision-making, decreasing clinic times, and the availability of the Internet, patients and their caregivers are increasingly researching cancer diagnoses online. It is essential for physicians to understand patient Internet usage as it relates to their own health education. Internet usage trends have been studied in various areas, but not in thoracic diseases. This prospective cohort study surveyed 337 thoracic surgery patients and their caregivers with both cancer and non-cancer diagnoses to examine their Internet usage trends. Cancer subjects were more likely to research their condition online if they were younger, had a higher income, had a higher education level, and were currently employed. Only age and income level were predictive for non-cancer subjects. Separately, cancer subjects were more likely to trust information found on the Internet if they had a higher education. Subjects were most likely to conduct research on a hospital website than other websites. These data will be helpful to thoracic surgeons who want to appropriately educate patients and their caregivers and direct them to reliable Internet sources. These data also illustrate the importance of developing trustworthy hospital websites with disease-specific information.
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Affiliation(s)
- Alisha D Lussiez
- University of Michigan Medical School, 1301 Catherine, Ann Arbor, MI, 48109, USA
| | - Stephanie Burdick
- Department of Internal Medicine, University of Michigan Medical Center, 3110 Taubman Center, SPC 5368, 1500 East Medical Center Drive, Ann Arbor, MI, 48109, USA
| | - Sindhura Kodali
- Department of Pediatrics, University of California, San Francisco, 505 Parnassus Avenue, M696, Box 0110, San Francisco, CA, 94143, USA
| | - Gustavo Rubio
- Department of General Surgery, University of Miami, 1611 Nw 12th Ave Ste 2169, Miami, FL, 33136, USA
| | - Jacob A Mack
- University of Michigan Medical School, 1301 Catherine, Ann Arbor, MI, 48109, USA
| | - Jules Lin
- University of Michigan Medical School, 1301 Catherine, Ann Arbor, MI, 48109, USA
- Section of Thoracic Surgery, Department of Surgery, University of Michigan Medical Center, Taubman Center, 2120, 1500 East Medical Center Drive, Ann Arbor, MI, 48109, USA
| | - Andrew C Chang
- University of Michigan Medical School, 1301 Catherine, Ann Arbor, MI, 48109, USA
- Section of Thoracic Surgery, Department of Surgery, University of Michigan Medical Center, Taubman Center, 2120, 1500 East Medical Center Drive, Ann Arbor, MI, 48109, USA
| | - Rishindra M Reddy
- University of Michigan Medical School, 1301 Catherine, Ann Arbor, MI, 48109, USA.
- Section of Thoracic Surgery, Department of Surgery, University of Michigan Medical Center, Taubman Center, 2120, 1500 East Medical Center Drive, Ann Arbor, MI, 48109, USA.
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21
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Selinger CP, Carbery I, Warren V, Rehman AF, Williams CJ, Mumtaz S, Bholah H, Sood R, Gracie DJ, Hamlin PJ, Ford AC. The relationship between different information sources and disease-related patient knowledge and anxiety in patients with inflammatory bowel disease. Aliment Pharmacol Ther 2017; 45:63-74. [PMID: 27778366 DOI: 10.1111/apt.13831] [Citation(s) in RCA: 37] [Impact Index Per Article: 4.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/08/2016] [Revised: 08/26/2016] [Accepted: 09/26/2016] [Indexed: 12/11/2022]
Abstract
BACKGROUND Patient education forms a cornerstone of management of inflammatory bowel disease (IBD). The Internet has opened new avenues for information gathering. AIM To determine the relationship between different information sources and patient knowledge and anxiety in patients with IBD. METHODS The use of information sources in patients with IBD was examined via questionnaire. Anxiety was assessed with the hospital anxiety and depression scale and disease-related patient knowledge with the Crohn's and colitis knowledge score questionnaires. Associations between these outcomes and demographics, disease-related factors, and use of different information sources were analysed using linear regression analysis. RESULTS Of 307 patients (165 Crohn's disease, 142 ulcerative colitis) 60.6% were female. Participants used the hospital IBD team (82.3%), official leaflets (59.5%), and official websites (53.5%) most frequently in contrast to alternative health websites (9%). University education (P < 0.001), use of immunosuppressants (P = 0.025), Crohn's and Colitis UK membership (P = 0.001), frequent use of the hospital IBD team (P = 0.032), and frequent use of official information websites (P = 0.005) were associated with higher disease-related patient knowledge. Female sex (P = 0.004), clinically active disease (P < 0.001), frequent use of general practitioners (P = 0.014), alternative health websites (homoeopathy, nutritionists, etc.) (P = 0.004) and random links (P = 0.016) were independently associated with higher anxiety. CONCLUSIONS Different patient information sources are associated with better knowledge or worse anxiety levels. Face-to-face education and written information materials remain the first line of patient education. Patients should be guided towards official information websites and warned about the association between the use of alternative health websites or random links and anxiety.
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Affiliation(s)
- C P Selinger
- Leeds Gastroenterology Institute, Leeds Teaching Hospitals NHS Trust, Leeds, UK.,Leeds Institute of Biomedical and Clinical sciences, University of Leeds, Leeds, UK
| | - I Carbery
- Leeds Gastroenterology Institute, Leeds Teaching Hospitals NHS Trust, Leeds, UK
| | - V Warren
- Leeds Gastroenterology Institute, Leeds Teaching Hospitals NHS Trust, Leeds, UK
| | - A F Rehman
- Leeds Gastroenterology Institute, Leeds Teaching Hospitals NHS Trust, Leeds, UK
| | - C J Williams
- Leeds Gastroenterology Institute, Leeds Teaching Hospitals NHS Trust, Leeds, UK
| | - S Mumtaz
- Leeds Gastroenterology Institute, Leeds Teaching Hospitals NHS Trust, Leeds, UK
| | - H Bholah
- Leeds Gastroenterology Institute, Leeds Teaching Hospitals NHS Trust, Leeds, UK
| | - R Sood
- Leeds Gastroenterology Institute, Leeds Teaching Hospitals NHS Trust, Leeds, UK.,Leeds Institute of Biomedical and Clinical sciences, University of Leeds, Leeds, UK
| | - D J Gracie
- Leeds Gastroenterology Institute, Leeds Teaching Hospitals NHS Trust, Leeds, UK.,Leeds Institute of Biomedical and Clinical sciences, University of Leeds, Leeds, UK
| | - P J Hamlin
- Leeds Gastroenterology Institute, Leeds Teaching Hospitals NHS Trust, Leeds, UK.,Leeds Institute of Biomedical and Clinical sciences, University of Leeds, Leeds, UK
| | - A C Ford
- Leeds Gastroenterology Institute, Leeds Teaching Hospitals NHS Trust, Leeds, UK.,Leeds Institute of Biomedical and Clinical sciences, University of Leeds, Leeds, UK
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22
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Okoniewski AE, Lee YJ, Rodriguez M, Schnall R, Low AFH. Health information seeking behaviors of ethnically diverse adolescents. J Immigr Minor Health 2016; 16:652-60. [PMID: 23512322 DOI: 10.1007/s10903-013-9803-y] [Citation(s) in RCA: 10] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/22/2023]
Abstract
Research on health information has primarily focused on the needs of adults or parents of children with chronic illnesses or consumers. There is limited research on the health information needs of adolescents and in particular those from underserved communities. The primary objective of this qualitative study was to understand the health information needs of healthy, urban adolescents, and how they met those needs. Focus group methodology was used to gather information from a sample of ethnically diverse urban adolescents. Data was analyzed using Kriekelas' information seeking behavior framework to, examine the participants'' report of their immediate and deferred health information needs. Our sample of adolescents used several different sources to satisfy their health information needs depending on acuity and severity, which was congruent with Kriekelas' framework. Understanding how adolescents use technology to meet their health information needs, and in what order of preference, will be critical for the development of technology that adolescents find useful and has the potential to decrease health disparities.
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Abstract
Patients with chronic illnesses such as Inflammatory Bowel Disease (IBD) have been more keen to utilize the Internet and in particular, social media to obtain patient educational information in recent years. It is important for the gastroenterologist to be aware of these modalities and how they might affect information exchange and ultimately, disease management. This article addresses the current prevalence of social media use, advent of mobile health applications, social media usage in patients with chronic conditions, usage amongst providers, and most notably, the usage and preferences in IBD patients. Over the last decade there has been an increasing desire from patients to receive educational material about their disease through social media. We reviewed the medical literature on the quality of IBD-related information on social media. Given the disparity of information available on the Internet, we remark on the quality of this information and stress the need for further research to assess the validity of IBD information posted on social media.
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Internet Searches About Therapies Do Not Impact Willingness to Accept Prescribed Therapy in Inflammatory Bowel Disease Patients. Dig Dis Sci 2016; 61:1013-20. [PMID: 26660681 DOI: 10.1007/s10620-015-3981-5] [Citation(s) in RCA: 7] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/07/2015] [Accepted: 11/25/2015] [Indexed: 12/09/2022]
Abstract
BACKGROUND A significant majority of patients with inflammatory bowel disease (IBD) search the Internet for information about their disease. While patients who search the Internet for disease or treatment information are believed to be more resistant to accepting medical therapy, no studies have tested this hypothesis. METHODS All IBD patients over a 3-month period across three gastroenterology practices were surveyed about their disease, treatments, websites visited, attitudes toward medications, and their willingness to accept prescribed therapies after disease-related Internet searches. RESULTS Of 142 total patients, 91 % of respondents searched the Internet for IBD information. The vast majority (82 %) reported taking medication upon their doctor's recommendation and cited the desire to acquire additional information about their disease and prescribed therapies as their most important search motivator (77 %). Internet usage did not affect the willingness of 52 % of our cohort to accept prescribed medication. CONCLUSION The majority of IBD patients who searched the Internet for disease and treatment-related information were not affected in their willingness to accept prescribed medical therapy.
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Sowter J, Astin F, Dye L, Marshall P, Knapp P. Assessment of the quality and content of website health information about herbal remedies for menopausal symptoms. Maturitas 2016; 88:16-22. [PMID: 27105691 DOI: 10.1016/j.maturitas.2016.02.016] [Citation(s) in RCA: 11] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/23/2015] [Revised: 02/23/2016] [Accepted: 02/26/2016] [Indexed: 10/22/2022]
Abstract
OBJECTIVE To assess the quality, readability and coverage of website information about herbal remedies for menopausal symptoms. STUDY DESIGN A purposive sample of commercial and non-commercial websites was assessed for quality (DISCERN), readability (SMOG) and information coverage. MAIN OUTCOME MEASURES Non-parametric and parametric tests were used to explain the variability of these factors across types of websites and to assess associations between website quality and information coverage. RESULTS 39 sites were assessed. Median quality and information coverage scores were 44/80 and 11/30 respectively. The median readability score was 18.7, similar to UK broadsheets. Commercial websites scored significantly lower on quality (p=0.014), but there were no statistical differences for information coverage or readability. There was a significant positive correlation between information quality and coverage scores irrespective of website provider (r=0.69, p<0.001, n=39). CONCLUSION Overall website quality and information coverage are poor and the required reading level high.
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Affiliation(s)
| | - Felicity Astin
- School of Human and Health Sciences, University of Huddersfield, UK
| | - Louise Dye
- School of Psychology, University of Leeds, UK
| | | | - Peter Knapp
- Dept. of Health Sciences, University of York, UK
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Alexakis C, Davies G, Stephens J, Clark S, Rogers S, Poullis A. Perspectives and attitudes of young patients with inflammatory bowel disease: symptoms, burden of disease and communication with their healthcare professionals. Frontline Gastroenterol 2014; 5:197-202. [PMID: 28839770 PMCID: PMC5369726 DOI: 10.1136/flgastro-2013-100400] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/10/2013] [Revised: 11/19/2013] [Accepted: 11/20/2013] [Indexed: 02/04/2023] Open
Abstract
INTRODUCTION Inflammatory bowel disease (IBD) affects a significant proportion of young patients in the UK. The role of the healthcare professional, and their relationship with the young patient is particularly important at this difficult stage of their life, when education, social integration and career planning, can be dramatically affected by this consuming condition. OBJECTIVES To address the attitudes, experiences and erspectives of young patients suffering from IBD, focusing particularly on the relationship between sufferer and healthcare provider. METHODS Crohn's and Colitis UK invited its young members to respond to a detailed internet based questionnaire addressing various aspects of patients' disease and their relationship with respective healthcare workers. RESULTS 1081 patients aged 29 years or less responded. Self reported burden of illness was high with only 12% respondents free from a disease flare in the previous 12 months with almost half being hospitalised in the same period. Quality of ommunication with healthcare providers was generally high, with three-quarters of patients feeling appropriately empowered in their healthcare decisions. The IBD nurse specialist was highlighted as a particularly valuable member of the team, scoring the highest of the professional groups in communication comfort scores, as well as being nominated by the patients as the preferred professional group to discuss their disease with. CONCLUSIONS The results emphasize the considerable impact of the disease that this group is encumbered with, and identifies areas in the patient-professional relationship that can be augmented to improve the overall healthcare of this complex and fragile subgroup of patients.
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Affiliation(s)
- C Alexakis
- Department of Gastroenterology, St George's Hospital, London, UK
| | - G Davies
- Crohn's and Colitis UK, Hertfordshire, UK
| | - J Stephens
- Crohn's and Colitis UK, Hertfordshire, UK
| | - S Clark
- Crohn's and Colitis UK, Hertfordshire, UK
| | - S Rogers
- Crohn's and Colitis UK, Hertfordshire, UK
| | - A Poullis
- Department of Gastroenterology, St George's Hospital, London, UK
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O'Connor M, Bager P, Duncan J, Gaarenstroom J, Younge L, Détré P, Bredin F, Dibley L, Dignass A, Gallego Barrero M, Greveson K, Hamzawi M, Ipenburg N, Keegan D, Martinato M, Murciano Gonzalo F, Pino Donnay S, Price T, Ramirez Morros A, Verwey M, White L, van de Woude CJ. N-ECCO Consensus statements on the European nursing roles in caring for patients with Crohn's disease or ulcerative colitis. J Crohns Colitis 2013; 7:744-64. [PMID: 23831217 DOI: 10.1016/j.crohns.2013.06.004] [Citation(s) in RCA: 73] [Impact Index Per Article: 6.1] [Reference Citation Analysis] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/28/2013] [Accepted: 06/05/2013] [Indexed: 02/08/2023]
Affiliation(s)
- M O'Connor
- IBD Unit, St. Mark's Hospital, Harrow, London, UK. marian.o'
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Yeung TM, D'Souza ND. Quality analysis of patient information on surgical treatment of haemorrhoids on the internet. Ann R Coll Surg Engl 2013; 95:341-4. [PMID: 23838496 DOI: 10.1308/003588413x13629960045670] [Citation(s) in RCA: 20] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/10/2023] Open
Abstract
INTRODUCTION Haemorrhoids are the most common benign condition seen by colorectal surgeons. At clinic appointments, advice given about lifestyle modification or surgical interventions may not be understood fully by patients. Patients may use the internet for further research into their condition. However, the quality of such information has not been investigated before. This study assessed the quality of patient information on surgical treatment of haemorrhoids on the internet. METHODS Four searches were carried out using the search terms 'surgery for haemorrhoids' and 'surgery for piles' on two search engines (Google and Yahoo). The first 50 results for each search were assessed. Sites were evaluated using the DISCERN instrument. RESULTS In total, 200 websites were assessed, of which 144 fulfilled the inclusion criteria. Of these, 63 (44%) were sponsored by herbal remedies for haemorrhoids. Eighty-nine (62%) mentioned conservative treatment options but eleven (8%) did not include surgery in their treatment options. Only 38 sites (27%) mentioned recurrence of haemorrhoids following surgery and 28 sites (20%) did not list any complications. Overall, 19 websites (14%) were judged as being of high quality, 66 (45%) as moderate quality and 58 (40%) as low quality. CONCLUSIONS The quality of information on the internet is highly variable and a significant proportion of websites assessed are poor. The majority of websites are sponsored by private companies selling alternative treatments for haemorrhoids. Clinicians should be prepared to advise their patients which websites can provide high-quality information on the surgical treatment of haemorrhoids.
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Affiliation(s)
- T M Yeung
- Oxford University Hospitals NHS Trust, UK.
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Mukewar S, Mani P, Wu X, Lopez R, Shen B. YouTube and inflammatory bowel disease. J Crohns Colitis 2013; 7:392-402. [PMID: 22906403 DOI: 10.1016/j.crohns.2012.07.011] [Citation(s) in RCA: 65] [Impact Index Per Article: 5.4] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/27/2012] [Revised: 07/10/2012] [Accepted: 07/11/2012] [Indexed: 02/08/2023]
Abstract
UNLABELLED Background and aims Nearly half of all patients with inflammatory bowel disease (IBD) use the Internet as a source of information for their disease. We analyzed the source, content and accuracy of IBD videos found on YouTube - one of the most popular websites in the United States - and assessed the demographic variables of the viewers. METHODS The 100 most viewed videos with relevant information on IBD were analyzed. We included only English language videos that were less than 20 min in length and primarily focused on IBD. Those with no sound/poor sound quality were excluded. More than 30 variables were analyzed. RESULTS Adults of 45-54 years old (95.1%) comprised the most common age group of viewers. Forty-eight percent of videos focused on Crohn's disease (CD), 32.0% on ulcerative colitis (UC), and 20.0% on both. Overall content for patient education was poor. Videos discussing alternative treatment options were more likely to depict patients' personal experience (73.9% vs. 2.4%) (p<0.001) and be an advertisement compared to patient education videos (78.3% vs. 0) (p<0.001). Videos discussing patient education had a higher number of favorites (mean 25.0 vs. 5.5) (p<0.001), comments (mean 22.0 vs. 5.0) (p<0.022) and "likes" (mean 19.0 vs. 9.0) (p=0.025) than the ones discussing alternative treatment options. CONCLUSIONS YouTube videos on IBD are popular but a poor source of patient education. Healthcare providers and professional societies should provide more educational materials using this powerful Internet tool to counteract the misleading information, especially for the targeted age group (45-54 years).
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Affiliation(s)
- Saurabh Mukewar
- Department of Internal Medicine, The Cleveland Clinic Foundation, Cleveland, OH 44195, United States
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The information needs and preferences of persons with longstanding inflammatory bowel disease. CANADIAN JOURNAL OF GASTROENTEROLOGY = JOURNAL CANADIEN DE GASTROENTEROLOGIE 2012; 26:525-31. [PMID: 22891177 DOI: 10.1155/2012/735386] [Citation(s) in RCA: 57] [Impact Index Per Article: 4.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 12/19/2022]
Abstract
BACKGROUND Understanding the information needs and preferred vehicles of information delivery to patients with inflammatory bowel disease (IBD) will enhance their care. OBJECTIVE To survey persons with longstanding IBD as to their information needs and preferred vehicles of information delivery. METHODS The population-based Manitoba IBD Cohort (n=271, mean disease duration 11 years) was surveyed to assess its information needs across 23 issues, both retrospectively at the time of diagnosis and currently. RESULTS Most participants (64%) were initially diagnosed by a gastroenterologist, or otherwise by a family physician (19%) or surgeon (12%). Recalling time of diagnosis, at least 80% rated as very important information about common symptoms of IBD, possible complications, long-term prognosis, medication side effects, self management of symptoms and when to involve the doctor, yet only 10% to 36% believed they received the right amount of information about these issues. Dietary guidance was also regarded as important by 80% to 89%, yet only 8% to 16% received the correct amount of information. Regarding current needs, a large proportion believed it would be very helpful to have more information about long-term prognosis (66%) and diet considerations (60% to 68%). The following information sources were regarded as very acceptable: medical specialist (81%); brochure (79%); family doctor (64%); and website (64%), with 51% ranking the medical specialist as the first choice. In a comparison of the responses of this cohort to those of a recently diagnosed sample, there was remarkable consistency in the information needs and most desired sources of information. DISCUSSION In the present population-based cohort with longstanding disease, dietary information was regarded as the least adequately addressed. There was clear openness to receiving information through other routes than just the medical specialist, suggesting that optimizing brochures and websites would be an important adjunct source of information. CONCLUSION Approximately 10 years after diagnosis, only a small percentage of persons with IBD believed they received the correct amount of information about the issues they regarded as most important to have discussed at diagnosis.
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Fortinsky KJ, Fournier MR, Benchimol EI. Internet and electronic resources for inflammatory bowel disease: a primer for providers and patients. Inflamm Bowel Dis 2012; 18:1156-63. [PMID: 22147497 DOI: 10.1002/ibd.22834] [Citation(s) in RCA: 24] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/23/2011] [Accepted: 10/24/2011] [Indexed: 12/09/2022]
Abstract
Patients with inflammatory bowel disease (IBD) are increasingly turning to the Internet to research their condition and engage in discourse on their experiences. This has resulted in new dynamics in the relationship between providers and their patients, with misinformation and advertising potentially presenting barriers to the cooperative patient-provider partnership. This article addresses important issues of online IBD-related health information and social media activity, such as quality, reliability, objectivity, and privacy. We reviewed the medical literature on the quality of online information provided to IBD patients, and summarized the most commonly accessed Websites related to IBD. We also assessed the activity on popular social media sites (such as Facebook, Twitter, and YouTube), and evaluated currently available applications for use by IBD patients and providers on mobile phones and tablets. Through our review of the literature and currently available resources, we developed a list of recommended online resources to strengthen patient participation in their care by providing reliable, comprehensive educational material.
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Affiliation(s)
- Kyle J Fortinsky
- Division of Gastroenterology, Hepatology & Nutrition, Children's Hospital of Eastern Ontario, Ottawa, Canada
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