Perspectives, experiences, and concerns with cyclical vomiting syndrome: Insights from online targeted-disease forums.

INTRODUCTION: There is limited research examining the biopsychosocial impact of cyclic vomiting syndrome (CVS) on patients. This study aims to assess individuals' experiences, fears, and concerns associated with CVS and the impact of CVS on their daily lives. METHODS: We employed social netnography to analyze publicly available posts related to CVS that were identified from six US online forums and Twitter. A randomly selected sub-cohort of posts per pre-defined criteria was first qualitatively analyzed using an inductive thematic approach. Then, machine learning topic modeling was applied to explore themes in an unsupervised manner for the entire corpus of posts. Afterward, findings from the qualitative and quantitative approaches were integrated to generate a thematic network. RESULTS: Based on the 39,179 collected posts, seven domain themes were identified. Overall, 41.4% of the posts were related to "biopsychosocial burden" of CVS, including physical impact, psychological impact, and social impact. In 22.3% of posts, individuals shared their experience of "interactions with the healthcare system", and 14.2% of posts were related to "perceived CVS triggers." Individuals also shared "solutions to alleviate their symptoms" and "mental health needs" in 10.2% and 8.8% of posts, respectively. Finally, 6.1% of the posts were about "seeking/sharing support" with others. DISCUSSION: This is the first social netnography study to describe the in-depth experiences of individuals living with CVS and the marked impact on their physical, mental, and social health. The study also highlights the unmet need for effective therapies, both pharmacological and non-pharmacological, to alleviate the biopsychosocial impact of CVS.

Patients' Perspectives, Experiences, and Concerns With Perianal Fistulae: Insights From Online Targeted-Disease Forums.

Background: Perianal fistulae can undermine physical, emotional, and social well-being in patients with Crohn's disease and are challenging to manage. Social media offers a rich opportunity to gain an in-depth understanding of the impact of perianal fistulae on patients' daily lives outside of controlled environments. In this study, we conducted social media analytics to examine patients' experiences with perianal fistulae and assessed the impact of perianal fistulae on patients' behavior and overall well-being. Methods: We used a mixed-method approach to examine 119 986 publicly available posts collected from 10 Crohn's disease forums in the United States between January 01, 2010 and January 01, 2020. Discussions related to Crohn's perianal fistulae were retrieved. We randomly selected 700 posts and qualitatively analyzed them using an inductive thematic approach. We then applied a latent Dirichlet allocation probabilistic topic model to explore themes in an unsupervised manner on the collection of 119 986 posts. Results: In the qualitative analysis, 5 major themes were identified: (1) burden of perianal fistula; (2) challenges associated with treatment; (3) online information seeking and sharing; (4) patient experiences with treatments; and (5) patients' apprehension about treatments. In the quantitative analysis, the percentages of posts related to the major themes were (1) 20%, (2) 29%, (3) 66%, and (4) 28%, while the topic model did not identify theme 5. Conclusions: Social media reveals a dynamic range of themes governing patients' perspectives and experiences with Crohn's perianal fistulae. In addition to the biopsychosocial burden, patients frequently express dissatisfaction with current treatments and often struggle to navigate among available management options.

Web-Based Video Education to Improve Uptake of Influenza Vaccination and Other Preventive Health Recommendations in Adults With Inflammatory Bowel Disease: Randomized Controlled Trial of Project PREVENT.

BACKGROUND: Patients with inflammatory bowel disease (IBD) are at increased risk of infections, bone fractures, and skin cancers. OBJECTIVE: We developed preventive health videos using a patient-centered approach and tested their impact on preventive health uptake. METHODS: Five animated videos explaining preventive health recommendations in IBD were iteratively developed with patient-centered focus groups and interviews. A randomized controlled trial was then conducted in a web-based IBD cohort to test the impact of video- versus text-based educational interventions. The primary outcome was receipt of the influenza vaccine. Secondary outcomes included intention to receive other preventive health services. RESULTS: Five animated videos were developed with patient input. A total of 1056 patients with IBD were then randomized to receive the video (n=511) or text-only (n=545) interventions; 55% (281/511) of the video group and 57% (311/545) of the text-only group had received their influenza vaccine in the prior year. Immediately after the intervention, 73% (502/683) of patients reported their intention to receive the vaccine, with no difference by the type of intervention (75%, 231/307, for the video group and 72%, 271/376, for the text-only group). The proportion of patients who actually received the influenza vaccine after the intervention also did not differ by messaging type (P=.07). The strongest predictor of both intention to receive and actual receipt of the influenza vaccine was prior influenza vaccination. Older age was also associated with a higher likelihood of the intention to receive (age 36-75 years relative to 18-35 years; P=.006) and actual receipt (age >75 years relative to 18-35 years; P=.05) of the influenza vaccine. CONCLUSIONS: The proportion of patients receiving the influenza vaccine was high in both groups, but there was no difference in receipt of or in the intention to receive preventive health recommendations by type of messaging. Notably, a portion of patients in both groups had intended to be vaccinated but did not ultimately receive the vaccine. Further evaluation of patient-education strategies is warranted to improve preventive health uptake among patients with IBD. TRIAL REGISTRATION: ClinicalTrials.gov NCT05997537; https://clinicaltrials.gov/ct2/show/NCT05997537.

Cluster-Randomized Comparative Effectiveness Trial of Physician-Directed Clinical Decision Support Versus Patient-Directed Education to Promote Appropriate Use of Opioids for Chronic Pain.

We compared the effectiveness of physician-directed clinical decision support (CDS) administered via electronic health record versus patient-directed education to promote the appropriate use of opioids by conducting a cluster-randomized trial involving 82 primary care physicians and 951 of their patients with chronic pain. Primary outcomes were satisfaction with patient-physician communication consumer assessment of health care providers and system clinician and group survey (CG-CAHPS) and pain interference patient-reported outcomes measurement information system. Secondary outcomes included physical function (patient-reported outcomes measurement information system), depression (PHQ-9), high-risk opioid prescribing (>90 morphine milligram equivalents per day [≥90 mg morphine equivalent/day]), and co-prescription of opioids and benzodiazepines. We used multi-level regression to compare longitudinal difference-in-difference scores between arms. The odds of achieving the maximum CG-CAHPS score were 2.65 times higher in the patient education versus the CDS arm (P = .044; 95% confidence interval [CI] 1.03-6.80). However, baseline CG-CAHPS scores were dissimilar between arms, making these results challenging to interpret definitively. No difference in pain interference was found between groups (Coef = -0.64, 95% CI -2.66 to 1.38). The patient education arm experienced higher odds of Rx ≥ 90 milligrams morphine equivalent/day (odds ratio = 1.63; P = .010; 95% CI 1.13, 2.36). There were no differences between groups in physical function, depression, or co-prescription of opioids and benzodiazepines. These results suggest that patient-directed education may have the potential to improve satisfaction with patient-physician communication, whereas physician-directed CDS via electronic health records may have greater potential to reduce high-risk opioid dosing. More evidence is needed to ascertain the relative cost-effectiveness between strategies. PERSPECTIVE: This article presents the results of a comparative-effectiveness study of 2 broadly used communication strategies to catalyze dialog between patients and primary care physicians around chronic pain. The results add to the decision-making literature and offer insights about the relative benefits of physician-directed versus patient-directed interventions to promote the appropriate use of opioids.

Interactive Inflammatory Bowel Disease Biologics Decision Aid Does Not Improve Patient Outcomes Over Static Education: Results From a Randomized Trial.

INTRODUCTION: To support shared decision-making (SDM) between patients and providers surrounding biologic treatments, we created IBD&me ( ibdandme.org )-a freely available, unbranded, interactive decision aid. We performed a multicenter comparative effectiveness trial comparing the impact of IBD&me on SDM vs a biologics fact sheet developed by the Crohn's & Colitis Foundation. METHODS: We enrolled patients with inflammatory bowel disease (IBD) being seen at a clinic within IBD Qorus-a multicenter adult IBD learning health system-between March 5, 2019, and May 14, 2021. Eligible patients included those with recent IBD-related symptoms who reported that they wanted to discuss biologics with their provider during their upcoming visit. Patients were randomized 1:1 using stratified block randomization and received an e-mail 1 week before their visit inviting them to review either IBD&me or a fact sheet. The primary outcome was patient perception of SDM as measured by the 9-Item SDM Questionnaire (0-100 scale; higher = better); the Student t test was used to compare outcomes between arms. RESULTS: Overall, 152 patients were randomized (biologics fact sheet 75, IBD&me 77); most patients had Crohn's disease (66.4%) and were biologic-experienced (82.9%). No differences were seen between groups regarding SDM (fact sheet 72.6 ± 25.6, IBD&me 75.0 ± 20.8; P = .57). Most patients stated they would be likely to recommend the fact sheet (79.6%) or IBD&me (84.9%; P = .48) to another patient with IBD. DISCUSSION: No differences in outcomes were seen between IBD&me and the biologics fact sheet in this comparative effectiveness study; patients reported high satisfaction with both resources. Further study, particularly among biologic naïve patients, is needed to determine the utility of interactive components to IBD decision aids.

Social Media for the Dissemination of Educational Videos About Inflammatory Bowel Diseases.

INTRODUCTION: To broadly disseminate 5 user-centered educational videos for patients with inflammatory bowel disease and their family and friends on social media. METHODS: Relevant social media users were iteratively identified based on their online behavior. For each video, 2 different accompanying texts were tested. RESULTS: We reached 4.2 million social media users of whom 320,302 watched at least 50% of the video. A short description resulted in higher view rates than posing an open-ended question. DISCUSSION: We showed the feasibility of large-scale dissemination of health-related educational videos through social media. Our findings can inform future online dissemination approaches of educational content.

Assessment of inflammatory bowel disease educational videos for increasing patient engagement and family and friends' levels of understanding.

OBJECTIVE: We developed five educational videos through a user-centered approach for patients with inflammatory bowel diseases (IBD) and their families and friends. Here, we assessed if IBD patient activation and family and friends' abilities to understand IBD patients' thoughts, feelings, and behaviors (i.e., perspective taking) changed after watching the videos. METHODS: Through a pre-post survey, we assessed patient activation and perspective taking levels in people with a self-reported IBD diagnosis and their family and friends, respectively, before and after watching one of the videos. RESULTS: Among 767 participants with IBD, patient activation scores increased significantly after watching each video. In regression analyses, patient activation levels were less likely to increase in biologic-naïve participants after viewing the coping video. Among 232 people who knew someone with IBD, perspective taking scores increased significantly in 8/9 domains, which was more likely to occur among women. CONCLUSIONS: Educational videos developed through a user-centered approach were associated with higher self-reported IBD patient activation scores and perspective taking levels among family and friends. PRACTICE IMPLICATIONS: These videos, which are now widely disseminated on social media, serve as a model for how to create educational materials for improving patient activation and empathy in the social media era.

Home-based virtual reality for chronic pain: protocol for an NIH-supported randomised-controlled trial.

INTRODUCTION: Chronic pain is highly prevalent and associated with a large burden of illness; there is a pressing need for safe, home-based, non-pharmacological, interventions. Virtual reality (VR) is a digital therapeutic known to be effective for acute pain, but its role in chronic pain is not yet fully elucidated. Here we present a protocol for the National Institute of Health (NIH) Back Pain Consortium (BACPAC) VR trial that evaluates the effectiveness of three forms of VR for patients with chronic lower back pain (cLBP), a highly prevalent form of chronic pain. METHODS AND ANALYSIS: The NIH BACPAC VR trial will randomise 360 patients with cLBP into one of three arms, each administered through a head-mounted display: 1) skills-based VR, a program incorporating principles of cognitive behavioural therapy, mindful meditation and physiological biofeedback therapy using embedded biometric sensors; 2) distraction-based VR, a program using 360-degree immersive videos designed to distract users from pain; and 3) sham VR, a non-immersive program using two-dimensional videos within a VR headset. Research participants will be monitored for 12 weeks using a combination of patient-reported outcomes administered via REDCap (Research Electronic Data Capture), wearable sensor data collected via Fitbit Charge 4 and electronic health record data. The primary outcome will be the NIH Patient-Reported Outcomes Measurement Information System (PROMIS) Pain Interference scale. Secondary outcomes will include PROMIS Anxiety, PROMIS Sleep Disturbance, opioid prescription data and Pain Catastrophizing Scale Short Form. A subgroup analysis will explore patient level predictors for VR efficacy. ETHICS AND DISSEMINATION: Ethics approval was obtained from the Institutional Review Board of Cedars-Sinai Health System in April 2020. The results will be disseminated in a peer-reviewed journal. TRIAL REGISTRATION NUMBER: NCT04409353.

Developing Patient-Centered Inflammatory Bowel Disease-Related Educational Videos Optimized for Social Media: Qualitative Research Study.

BACKGROUND: Important knowledge gaps have been identified related to the causes and symptoms of inflammatory bowel disease (IBD) and medical treatments and their side effects. Patients with IBD turn to social media to learn more about their disease. However, such information found on the web is misleading and often of low quality. OBJECTIVE: This study aims to gain an in-depth understanding of the unmet educational needs of patients with IBD and to use the resulting insights to develop a collection of freely available, evidence-based educational videos optimized for dissemination through social media. METHODS: We used design thinking, a human-centered approach, to guide our qualitative research methodology. We performed focus groups and interviews with a diverse sample of 29 patients with IBD. Data collection was performed in 3 phases (inspiration, ideation, and implementation) based on IDEO design thinking. Phase 1 offered insights into the needs of patients with IBD, whereas phases 2 and 3 involved ideation, prototyping, and video testing. A thematic analysis was performed to analyze the resulting data. RESULTS: Patients emphasized the need for educational videos that address their challenges, needs, and expectations. From the data analysis, 5 video topics and their content emerged: IBD treatments' risks and benefits; how to be a self-advocate; how to stay healthy with IBD; how to cope with IBD; and educating families, friends, and colleagues about experiences of patients with IBD. CONCLUSIONS: Design thinking offers a deep understanding and recognition of the unmet educational needs of patients with IBD; this approach informed the development of 5 evidence-based educational videos. Future research will formally test and disseminate these freely available videos through social media.

Virtual reality for management of pain in hospitalized patients: A randomized comparative effectiveness trial.

OBJECTIVES: Therapeutic virtual reality (VR) has emerged as an effective, drug-free tool for pain management, but there is a lack of randomized, controlled data evaluating its effectiveness in hospitalized patients. We sought to measure the impact of on-demand VR versus "health and wellness" television programming for pain in hospitalized patients. METHODS: We performed a prospective, randomized, comparative effectiveness trial in hospitalized patients with an average pain score of ≥3 out of 10 points. Patients in the experimental group received a library of 21 VR experiences administered using the Samsung Gear Oculus headset; control patients viewed specialized television programming to promote health and wellness. Clinical staff followed usual care; study interventions were not protocolized. The primary outcome was patient-reported pain using a numeric rating scale, as recorded by nursing staff during usual care. Pre- and post-intervention pain scores were compared immediately after initial treatment and after 48- and 72-hours. RESULTS: There were 120 subjects (61 VR; 59 control). The mean within-subject difference in immediate pre- and post-intervention pain scores was larger in the VR group (-1.72 points; SD 3.56) than in the control group (-0.46 points; SD 3.01); this difference was significant in favor of VR (P < .04). When limited to the subgroup of patients with severe baseline pain (≥7 points), the effect of VR was more pronounced vs. control (-3.04, SD 3.75 vs. -0.93, SD 2.16 points; P = .02). In regression analyses adjusting for pre-intervention pain, time, age, gender, and type of pain, VR yielded a .59 (P = .03) and .56 (P = .04) point incremental reduction in pain versus control during the 48- and 72-hour post-intervention periods, respectively. CONCLUSIONS: VR significantly reduces pain versus an active control condition in hospitalized patients. VR is most effective for severe pain. Future trials should evaluate standardized order sets that interpose VR as an early non-drug option for analgesia.

Patient Understanding of the Risks and Benefits of Biologic Therapies in Inflammatory Bowel Disease: Insights from a Large-scale Analysis of Social Media Platforms.

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.

Virtual Reality for Management of Pain in Hospitalized Patients: Results of a Controlled Trial.

BACKGROUND: Improvements in software and design and reduction in cost have made virtual reality (VR) a practical tool for immersive, three-dimensional (3D), multisensory experiences that distract patients from painful stimuli. OBJECTIVE: The objective of the study was to measure the impact of a onetime 3D VR intervention versus a two-dimensional (2D) distraction video for pain in hospitalized patients. METHODS: We conducted a comparative cohort study in a large, urban teaching hospital in medical inpatients with an average pain score of ≥3/10 from any cause. Patients with nausea, vomiting, dementia, motion sickness, stroke, seizure, and epilepsy and those placed in isolation were excluded. Patients in the intervention cohort viewed a 3D VR experience designed to reduce pain using the Samsung Gear Oculus VR headset; control patients viewed a high-definition, 2D nature video on a 14-inch bedside screen. Pre- and postintervention pain scores were recorded. Difference-in-difference scores and the proportion achieving a half standard deviation pain response were compared between groups. RESULTS: There were 50 subjects per cohort (N=100). The mean pain reduction in the VR cohort was greater than in controls (-1.3 vs -0.6 points, respectively; P=.008). A total of 35 (65%) patients in the VR cohort achieved a pain response versus 40% of controls (P=.01; number needed to treat=4). No adverse events were reported from VR. CONCLUSIONS: Use of VR in hospitalized patients significantly reduces pain versus a control distraction condition. These results indicate that VR is an effective and safe adjunctive therapy for pain management in the acute inpatient setting; future randomized trials should confirm benefit with different visualizations and exposure periods. TRIAL REGISTRATION: Clinicaltrials.gov NCT02456987; https://clinicaltrials.gov/ct2/show/NCT02456987 (Archived by WebCite at http://www.webcitation.org/6pJ1P644S).