Social Media Use and Preferences in Patients With Inflammatory Bowel Disease

Reich, Jason; Guo, Ling; Groshek, Jacob; Weinberg, Janice; Chen, Wenli; Martin, Christopher F.; Long, Millie D.; Farraye, Francis A.

doi:10.1093/ibd/izy280

Cited by 56 publications

(36 citation statements)

References 16 publications

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“…They would have preferred a long conversation with their physician at diagnosis McDermott [ 67 ] 2018 Ireland N/A CD+UC 322 51% Age, sex, diagnosis (UC vs. CD), level of education, duration of disease Patients were most keen to receive education on medications, what to expect in future, living with IBD and diet Politi [ 59 ] 2008 Europe, Israel N/A CD+UC 917 49% Sex, age, diagnosis, educational level, marital status and geographical area Majority were curious about new fields of research, medical treatment, risks and complications. Sixty-six percent designated the specialist as their primary source of information Probert [ 20 ] 1991 UK N/A CD+UC 70 NA N/A The majority (75%) of patients with CD and UC wanted to know more about their diseases, with a preference for counseling by hospital doctors or specialty trained nurses in both patient groups Reich [ 68 ] 2019 USA Caucasian CD+UC 1960 75% Sex, age, remission status, education, IBD type, IBD medication Patients expressed a substantial interest in using social media to aid in disease management. Use was higher in younger patients, females, and patients with active disease Reich [ 69 ] 2016 USA Caucasian CD+UC 118 56% Sex, age, remission status, education, IBD type, IBD medication, geographical area Patients who frequently ...…”

Section: Resultsmentioning

confidence: 99%

Patient Perspectives and Expectations in Inflammatory Bowel Disease: A Systematic Review

et al. 2021

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Background In this systematic review, our objective was to assess inflammatory bowel disease (IBD) patient preferences and perspectives relating to their disease diagnosis, treatment, knowledge needs and telemedicine. Methods This study was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Four databases and conference proceedings were searched between January 1, 1980, and May 1, 2020. The methodological quality of the included studies was assessed using the Standards for reporting qualitative research checklist. Results Our search identified 240 citations and 52 studies met the inclusion criteria. The major expectations of the patients are symptomatic and pain control, quality of life and normal endoscopy. Patients' main concerns are access to information and healthcare, and shared decision making. At the time of diagnosis, patients expressed a greater need for knowledge about their IBD, preferentially by their treating gastroenterologist. The main treatment expectations in active disease are efficacy, safety and convenience. Patients are willing to accept relatively high risks of complications from medical therapy to avoid a permanent ostomy and to achieve durable remission. Patients are more interested in disease monitoring, research and development during the time of remission. Telemedicine and self-management with supervised e-health tools are feasible and acceptable amongst patients with IBD. Conclusion This systematic review demonstrates that patients with IBD expect more information about their disease process, shared decision making and symptom control. Further research is needed to help align patient and physician expectations in order to improve the quality of care provided to patients with IBD.

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Section: Resultsmentioning

confidence: 99%

Patient Perspectives and Expectations in Inflammatory Bowel Disease: A Systematic Review

et al. 2021

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“…The use of Facebook by patients to access and share medical information for chronic disease management has been well studied, and these studies may provide insight into how closed Facebook groups can be harnessed for medical education [7,[22][23][24][25][26][27][28][29][30]. In some studies, researchers have looked at relatively small and homogenous groups of individuals who participate in well-moderated, closed Facebook groups to enhance weight loss in African American women [31], improve physical activity in patients with type 2 diabetes [30], and improve exercise motivation in patients with stable coronary artery disease undergoing cardiac rehabilitation [31].…”

Section: Facebookmentioning

confidence: 99%

Social Media and Medical Education in the Context of the COVID-19 Pandemic: Scoping Review

Katz¹,

Nandi²

2021

JMIR Med Educ

147

104

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Background The COVID-19 pandemic has brought virtual web-based learning to the forefront of medical education as training programs adapt to physical distancing challenges while maintaining the rigorous standards of medical training. Social media has unique and partially untapped potential to supplement formal medical education. Objective The aim of this review is to provide a summary of the incentives, applications, challenges, and pitfalls of social media–based medical education for both trainees and educators. Methods We performed a literature review via PubMed of medical research involving social media platforms, including Facebook, Twitter, Instagram, YouTube, WhatsApp, and podcasts. Papers were reviewed for inclusion based on the integrity and power of the study. Results The unique characteristics of social media platforms such as Facebook, Twitter, Instagram, YouTube, WhatsApp, and podcasts endow them with unique communication capabilities that serve different educational purposes in both formal and informal education settings. However, contemporary medical education curricula lack widespread guidance on meaningful use, application, and deployment of social media in medical education. Conclusions Clinicians and institutions must evolve to embrace the use of social media platforms for medical education. Health care professionals can approach social media engagement in the same ethical manner that they would with patients in person; however, health care institutions ultimately must enable their health care professionals to achieve this by enacting realistic social media policies. Institutions should appoint clinicians with strong social media experience to leadership roles to spearhead these generational and cultural changes. Further studies are needed to better understand how health care professionals can most effectively use social media platforms as educational tools. Ultimately, social media is here to stay, influencing lay public knowledge and trainee knowledge. Clinicians and institutions must embrace this complementary modality of trainee education and champion social media as a novel distribution platform that can also help propagate truth in a time of misinformation, such as the COVID-19 pandemic.

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“…Notably, many people who suffer from chronic diseases resort to groups or communities in social networks to share experiences and stand by for news about their afflictions [8-10]. One recurrent example is inflammatory bowel disease (IBD), a chronic, relapsing, and remitting autoimmune disorder with 2 main conditions, Crohn disease and ulcerative colitis [11]. The worldwide incidence of these conditions has been increasing over the last few decades [12].…”

Section: Introductionmentioning

confidence: 99%

Using Twitter to Understand the Human Bowel Disease Community: Exploratory Analysis of Key Topics

Pérez-Pérez¹,

Pérez-Rodríguez²,

Fdez-Riverola³

et al. 2019

J Med Internet Res

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Background Nowadays, the use of social media is part of daily life, with more and more people, including governments and health organizations, using at least one platform regularly. Social media enables users to interact among large groups of people that share the same interests and suffer the same afflictions. Notably, these channels promote the ability to find and share information about health and medical conditions. Objective This study aimed to characterize the bowel disease (BD) community on Twitter, in particular how patients understand, discuss, feel, and react to the condition. The main questions were as follows: Which are the main communities and most influential users?; Where are the main content providers from?; What are the key biomedical and scientific topics under discussion? How are topics interrelated in patient communications?; How do external events influence user activity?; What kind of external sources of information are being promoted? Methods To answer these questions, a dataset of tweets containing terms related to BD conditions was collected from February to August 2018, accounting for a total of 24,634 tweets from 13,295 different users. Tweet preprocessing entailed the extraction of textual contents, hyperlinks, hashtags, time, location, and user information. Missing and incomplete information about the user profiles was completed using different analysis techniques. Semantic tweet topic analysis was supported by a lexicon-based entity recognizer. Furthermore, sentiment analysis enabled a closer look into the opinions expressed in the tweets, namely, gaining a deeper understanding of patients’ feelings and experiences. Results Health organizations received most of the communication, whereas BD patients and experts in bowel conditions and nutrition were among those tweeting the most. In general, the BD community was mainly discussing symptoms, BD-related diseases, and diet-based treatments. Diarrhea and constipation were the most commonly mentioned symptoms, and cancer, anxiety disorder, depression, and chronic inflammations were frequently part of BD-related tweets. Most patient tweets discussed the bad side of BD conditions and other related conditions, namely, depression, diarrhea, and fibromyalgia. In turn, gluten-free diets and probiotic supplements were often mentioned in patient tweets expressing positive emotions. However, for the most part, tweets containing mentions to foods and diets showed a similar distribution of negative and positive sentiments because the effects of certain food components (eg, fiber, iron, and magnesium) were perceived differently, depending on the state of the disease and other personal conditions of the patients. The benefits of medical cannabis for the treatment of different chronic diseases were also highlighted. Conclusions This study evidences that Twitter is becoming an influential space for conversation about bowel conditions, namely, patient opinions about associated symptoms and treatments. So, further qualitative and quantitative content analyses hold the potential to support decision making among health-related stakeholders, including the planning of awareness campaigns.

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Social Media Use and Preferences in Patients With Inflammatory Bowel Disease

Cited by 56 publications

References 16 publications

Patient Perspectives and Expectations in Inflammatory Bowel Disease: A Systematic Review

Patient Perspectives and Expectations in Inflammatory Bowel Disease: A Systematic Review

Social Media and Medical Education in the Context of the COVID-19 Pandemic: Scoping Review

Using Twitter to Understand the Human Bowel Disease Community: Exploratory Analysis of Key Topics

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