Inflammatory Bowel Disease (IBD) is a chronic digestive condition that requires continuous monitoring by healthcare professionals to determine appropriate therapy and manage short- and long-term complications. Telemedicine has become an essential approach for managing chronic conditions such as IBD, improving care accessibility and continuity, decreasing hospitalization rates, and optimizing patient follow-up. It enables rapid treatment adjustments and encourages patient self-management. Additionally, it reduces the burden on the healthcare system by decreasing unnecessary in-person visits and provides real-time support, thereby improving quality of life and clinical outcomes. The objective of this position statement by the Spanish Working Group on Crohn's Disease and Ulcerative Colitis (GETECCU) is to establish recommendations for the use of telemedicine in its different modalities (teleconsulting, telemonitoring, mobile applications and telepharmacy) for patients with IBD and address the legal, ethical, and technical aspects necessary for its proper implementation.

Inflammatory Bowel Disease (IBD) is an increasingly prevalent chronic condition that impacts the lives of patients and their relatives, and burdens healthcare systems. Redesigning care processes is warranted, with digital technologies offering opportunities to increase efficiency and reduce workloads. However, successful innovations require meaningful involvement of patients and informal caregivers. In this study, we aimed to identify what IBD patients and their informal caregivers value in IBD care.

A purposive sample of 18 IBD patients and 8 informal caregivers was drawn from an academic and a non-academic hospital in the Netherlands. Semi-structured interviews with a narrative approach focused on capturing real-life experiences and personal stories related to IBD care. Transcripts were analysed using inductive thematic analysis.

Patients and informal caregivers valued clear information and support regarding the disease, treatment, and daily management, along with active involvement in treatment planning. Regular contact with the same trusted healthcare professionals (HCPs), and effective treatment that alleviates symptoms and enables normal living, were deemed important. Patients appreciated a holistic, personalized approach. They welcomed remote care for follow-up and self-management, as long as the remote monitoring program was trustworthy and included easily accessible outpatient care if needed. Informal caregivers valued attentive HCPs who take patients seriously.

Key elements of IBD care valued by patients and informal caregivers include comprehensive support, active involvement, a person-centred approach, easy access to outpatient care, regular follow-ups with trusted HCPs, and remote care complementing outpatient services. Innovation teams should consider these elements when refining and developing innovations in IBD care.

The patient perspective is essential for assessing disease severity, but it is not always adequately considered. We describe how a comprehensive clinical disease severity index (DSI) for inflammatory bowel disease (IBD) correlates with patient global self-assessment (PGSA).

In an individually linked parallel online survey, physicians provided the DSI, and patients provided self-assessed severity using a global question and visual analog scale (0-100) (PGSA). Mean DSI values by PGSA were calculated with 95% confidence intervals. Pearson correlation (r) and the intraclass correlation coefficient were calculated for PGSA vs DSI. Positive predictive values for identifying severe disease with PGSA categories as a reference were based on a threshold >22 points.

The primary analysis included 89 pairs (46 Crohn's disease [CD], 43 ulcerative colitis [UC]) with strict criteria and 147 pairs when less stringent. Common reasons for exclusion were missing values for albumin or colonoscopy. Mean DSI values showed no clear trend with increasing PGSA in CD but good discrimination between moderate, severe, and very severe PGSA in UC. For PGSA on the visual analog scale, r was 0.54 for CD and 0.59 for UC (difference in means: CD 27.7, UC 13.8; intraclass correlation coefficient: CD 0.48, UC 0.58). A high DSI predicted severe disease in 76.2% of CD and 65.2% of UC.

The DSI showed good discrimination for patient-reported disease severity in UC but performed unsatisfactorily in CD. Correlations were moderate. Further refinement of the DSI is suggested to better reflect the patient perspective.

There is limited patient involvement in radiological research for perianal fistulizing Crohn's disease (pfCD), despite magnetic resonance imaging (MRI)'s critical role in diagnosis and management. Patient and public involvement is essential for aligning research with patient priorities. This study aimed to gather patient perspectives on the use of MRI in pfCD.

A mixed-methods approach was used, following Guidance for Reporting Involvement of Patients and the Public (GRIPP2) guidelines. An online survey, co-developed with a patient representative, included open and closed questions on MRI experiences, advantages, challenges, and the potential for Artificial Intelligence (AI)-generated reports. This was followed by a virtual session for further exploration of patient views. Thematic analysis was conducted on the data.

Forty-seven patients with Crohn's disease (37 with pfCD) from 6 countries participated, with 28/37 (76%) completing the survey. Key themes included patient expectations for MRI, preferences for scan intervals, and report content. Most (93%) wanted MRI reports to compare with previous scans, highlighting fistula changes and new abscesses. A majority (57%) preferred MRI scans annually when well, and more frequently after surgery (64.3% preferred scans at 3 months). Emotional relief was associated with MRI improvements, though access to services and report clarity remained challenging. Interest in AI-generated reports was expressed if clearly explained and validated by professionals.

This is the first study exploring patient views on MRI use in pfCD, emphasizing the need for patient-centred MRI reporting and clearer communication. Future work should enhance patient access and validate AI-generated MRI reports.

Background: A significant concern for patients with Inflammatory Bowel Disease (IBD) is predicting and managing disease flares. While healthcare providers rely on biomarkers, providing conclusive patient advice remains challenging. This review explores the role of lifestyle, psychological health, and environmental exposures in the prediction and management of IBD flares. Methods: This review followed PRISMA guidelines (2020). A structured search was conducted in PubMed for articles published between 2012 and 2024, using free and Medical Subject Heading (MeSH) terms for predicting factors in IBD. Inclusion criteria included studies reporting primary data on modifiable clinical or environmental predictors of IBD relapse, excluding studies on post-operative investigations, treatment cessation, and pediatric or pregnant populations. The Mixed Method Appraisal Tool (MMAT) was used to assess the quality of the studies. Results: Out of 2287 identified citations, 58 articles were included. Several modifiable factors influencing disease flares were identified, including psychological stress, sleep disturbances, smoking, and nutrition. Poor sleep quality and mental health were linked to increased flare risks, while smoking was associated with higher relapse rates in Crohn's disease. Environmental exposures, such as heat waves and high-altitude regions, also contributed. Predictive models integrating clinical, lifestyle, and psychological factors showed promising accuracy but require further refinement. Limitations of this review include the potential for publication bias, variability in flare definitions, and limited sample sizes Conclusions: Key predictors of IBD flares include dietary factors, psychological stress, poor sleep quality, and pharmacological influences. Personalized approaches integrating these predictors can optimize disease control and improve patient outcomes.

This study elucidated the impact of perceived stigma on the well-being of inflammatory bowel disease (IBD) patients and explored the mediating role of patient engagement. A descriptive cross-sectional study was conducted using an online survey, recruiting participants through the Italian IBD patient organization. The survey assessed perceived stigma, psychological well-being, and patient engagement using validated instruments. Data were analyzed using multiple regressions and bias-corrected bootstrapping analysis. Perceived stigma significantly predicted psychological well-being, and patient engagement significantly predicted well-being. Patient engagement partially mediated the relationship between perceived stigma and well-being, suggesting that lower levels of patient engagement were associated with higher perceived stigma, negatively affecting well-being. Perceived stigma significantly impairs the psychological well-being of IBD patients. However, patient engagement is important for mitigating adverse effects of stigma and enhancing overall well-being. Interventions to reduce stigma and promote patient engagement are essential for improving health outcomes in IBD management.

This study explored the prevalence and degree of misalignment between gastroenterologists and people with inflammatory bowel disease (IBD) and investigated communication features related to misalignment.

A mixed-methods approach incorporated qualitative and quantitative analyses of consultations and post-consultation patient and doctor interviews. Gastroenterologists at two Australian teaching hospitals and IBD patients participated in this study. Doctor-patient misalignment about topics discussed in consultations was quantified using patient and doctor interviews. Predictors of misalignment were hypothesised through a linguistic analysis of consultations and tested quantitatively.

Data from 69 patients and seven gastroenterologists showed that consultation participants had different perceptions about at least one aspect of care in 36 % of the consultations. Predictors of misalignment included missing the opportunity to clarify an issue or concern and missing the opportunity to explain the rationale for a diagnosis or recommendation.

Staying on the topic until the patient is ready to move on and using so-called related messages in questions and explanations increases the likelihood of doctor-patient alignment.

Generic and IBD-specific clinician- and patient-targeted interventions should cover strategies for adequately discussing patients' issues and concerns and clinicians' clinical reasoning. These strategies should also be considered in designing health promotion activities.

Crohn's disease (CD) is a lifelong condition that poses unique challenges. This study reports findings from a person's perspective of living with CD to help enhance the understanding of an individual's specific care and support needs.

Semi-structured telephone interviews were conducted with a convenience sample of adults with Crohn's disease recruited from Newcastle Hospitals NHS Foundation Trust. Data were analyzed after data collection using thematic analysis.

Forty-one (68% female) participants aged 49.1 ± 12 years with a disease duration between 1 and 55 years were interviewed. Three overarching themes emerged, along with 12 subthemes: (1) reactions to presenting symptoms, emotions, and challenges at diagnosis; (2) reality of living with the condition, seeking information, decision making, psychological challenges, experiencing symptoms/complications during remission and the impact on social life, education, employment, and relationships; (3) Resilience involving emotional adaptations, strategies on self-management, social comparisons as a means of coping and barriers to resilience.

The results highlight the complex health journey and challenges faced by people living with Crohn's disease and provide health care professionals with a greater insight into the psychological challenges and emotional complexities of the condition to facilitate a more holistic approach to planning care.

Background: Inflammatory bowel diseases (IBD), associated with a significant burden on patients' lives, are becoming increasingly common. Patients with IBD need continuous treatment and lifelong monitoring, which could be achieved by telemonitoring. Telemonitoring has been shown to be effective in improving outcomes for patients with IBD, and can provide a more convenient and accessible way for patients to receive care. However, the certainty of evidence remains low. This article outlines the methodology of a randomized control study that aims to assess the efficacy of telemonitoring compared to face-to-face follow-up for patients with IBD in Russia, hypothesizing that the implementation of telemonitoring will lead to improvement in clinical, social, and organizational areas. Methods: The TIGE-Rus study is a randomized controlled trial. The study consists of three stages, including selection of patients and random assignment into two groups with a ratio of 1:1, follow-up care using telemonitoring or face-to-face appointments, and evaluation and comparison of follow-up efficacy in both groups. In the first stage, all patients will undergo laboratory tests and instrumental examinations, and fill out questionnaires to measure disease activity, quality of life, medication adherence, psychological well-being, and satisfaction with medical care. In the second stage, the control group will receive standard care while the telemonitoring group will have access to a web platform where they can report their clinical activity, fill out questionnaires, and have online consultations with gastroenterologists. The gastroenterologists will also make monthly phone calls to each patient in the telemonitoring group to monitor their progress. In the third stage of the study, both the telemonitoring group and the control group will be re-hospitalized after six months of monitoring. IBD activity will be evaluated through laboratory and instrumental examinations. Additionally, all the participants will complete questionnaires to assess the disease activity, medication adherence, quality of life, psychological well-being, and satisfaction with medical care in both groups. Conclusions: The trial will explore whether telemonitoring is effective in improving clinical, social, and organizational aspects in the management of patients with IBD in the setting of the Russian healthcare system.

Inflammatory bowel disease (IBD) is a chronic condition that includes ulcerative colitis and Crohn's disease. It is characterized by a relapsing and remitting pattern that negatively impacts quality of life (QoL). Current goals of treatment involve symptomatic, biochemical, and endoscopic remission in a treat-to-target approach. Despite effective treatment and remission of IBD, many patients report frequent and isolated abdominal pain. A wide range of etiologies exist, including surgery-related, infections, pelvic conditions, immune-related, and systemic illnesses. Disorders of the gut-brain interaction (DGBI), frequently characterized by abdominal pain, are increasingly recognized in IBD patients, including those with quiescent disease. Various mechanisms are involved and numerous non-pharmacologic and pharmacologic therapies have been proposed. Hereby, we outline the pertinent findings of the literature on management of chronic abdominal pain, focusing on quiescent IBD.

Fecal microbiota transplantation (FMT) has shown promise at inducing remission in ulcerative colitis. This study is the first of its kind to evaluate the efficacy and safety of FMT at inducing remission in Crohn's disease (CD).

This double-blind, placebo-controlled trial was conducted in 3 Canadian academic centers; randomized patients with mild-to-moderate CD received FMT or placebo. The first treatment was administered by colonoscopy followed by weekly oral capsules for 7 weeks. Primary end point was clinical and endoscopic remission at week 8. Secondary outcomes included clinical and endoscopic response, adverse events, and health-related quality of life using generic and disease-specific instruments.

From July 2017 to June 2021, 21 and 13 patients were randomized to FMT and placebo groups, respectively. The trial terminated early due to futility. At week 8, 0% (0/15) of patients in the FMT group versus 8.3% (1/11) in the placebo group reached the primary end point of combined clinical and endoscopic remission as per protocol analysis. There were no differences between the groups in clinical or endoscopic responses. One patient in each group had worsening of CD. Although both groups experienced statistically significant improvements in health-related quality of life, only the FMT group had a significant decrease in activity impairment. Although there were no significant changes in microbial diversity or composition, patients who achieved clinical response became more similar to their donors in stool microbial composition.

FMT was not effective at inducing clinical and endoscopic remission in CD using the FMT regimen in this study. Future studies may use other strategies to enhance treatment response, including longer intervention, antibiotic pretreatment, optimized donor-recipient pairing, and concomitant anti-inflammatory diet, and biologic or small molecule therapies.

Crohn's disease (CD) is a chronic inflammatory bowel disease (IBD) characterised by endoscopic inflammation, progressive bowel damage and gastrointestinal lesions. Although treatment strategies for CD have traditionally focused on a stepwise pharmacological approach to achieve clinical remission or symptom resolution, these treatment goals correlate poorly with disease activity. Thus, achieving full clinical remission and full endoscopic healing alone may be insufficient, as patients may remain at risk of inflammatory complications. Individualised 'treat-to-target' (T2T) pharmacological and treatment approaches represent a promising strategy for improving endoscopic remission and symptom resolution among patients with CD. The Selecting Therapeutic Targets in Inflammatory Bowel Disease (STRIDE) and STRIDE-II guidelines, launched in 2013 and later renewed, identified individualised targets for a T2T therapeutic approach for patients with IBD. These guidelines facilitate the individualisation of target treatment goals through evidence-based, long-term (health-related quality of life, absence of disability, endoscopic healing) and intermediate/short-term (abdominal pain, stool frequency, normalisation of biomarker levels) treatment targets, allowing patients and clinicians to consider the risk-to-benefit balance of goals and selected therapeutic strategies. This article aims to summarise the STRIDE-II guidelines and provide intellectual guidance for healthcare professionals to apply the STRIDE-II principles to current clinical practice in the United Kingdom (UK). Management recommendations for primary and secondary first-line non-responders are provided, along with suggestions for utilising the endoscopic outcomes scoring system in UK clinical practice.

Inflammatory bowel disease (IBD) follows a heterogenous disease course and predicting a patient's prognosis is challenging. There is a wide burden of illness in IBD and existing tools measure disease activity at a snapshot in time. Comprehensive assessment of IBD severity should incorporate disease activity, prognosis, and the impacts of disease on a patient. This review investigates the concept of disease severity in adults with IBD to highlight key components contributing to this.

To perform this narrative review, a Medline search was conducted for full-text articles available at 1st March 2024 using search terms which encompassed disease activity assessment, disease severity, prognosis, natural history of Crohn's disease (CD) and ulcerative colitis (UC), and the burden of IBD.

Current methods of disease assessment in IBD have evolved from a focus on the burden of symptoms to one that includes inflammatory targets, genetic, serological, and proteomic profiles, and assessments of quality-of-life (QoL), disability, and psychosocial health. Longitudinal studies of IBD suggest that the burden of illness is driven by disease phenotype, clinical markers of complicated disease course (previous intestinal resection, corticosteroid use, perianal disease in CD, recent hospitalisations in UC), gut inflammation, and the impact of IBD on the patient.

Disease severity in IBD can be difficult to conceptualise due to the multitude of factors that contribute to IBD outcomes. Measurement of IBD severity may better encapsulate the full burden of illness rather than gut inflammation alone at a single timepoint and may be associated with longitudinal outcomes.

IBD care has gone through a real transformation over the last century, moving from the mere unidirectional interaction between the physician and the patient to a stronger framework with multiple stakeholders who interconnect and strengthen each other. The patient has evolved from a passive subject to the central pole in the care pathway. Key elements of the future framework include patient self-care and empowerment, and remote monitoring [eHealth]. This care will be delivered by a multidisciplinary team acknowledging the pivotal role of the IBD nurse, and emphasising and measuring the quality of its work. The big challenge for the future is to establish a financially viable model to make this evolution durable in the long term, and this by using the principles of value-based health care.

Patients with inflammatory bowel disease (IBD) require lifelong treatment, which significantly impacts their quality of life. Self-management of this disease is an effective factor in managing chronic conditions and improving patients' quality of life. The use of mobile applications is a novel approach to providing self-management models and healthcare services for patients with IBD. The present systematic review aimed to identify the features and technologies used in the development of IBD disease management applications.

This systematic review was conducted according to PRISMA guidelines in PubMed, Scopus, and Web of Sciences databases up to August 8, 2023, which included initial searches, screening studies, assessing eligibility and risk of bias, and study selection. The data extraction form was based on the study objectives, including bibliographic information from articles, such as the first author's name, year of publication, country of origin, and details related to mobile health applications, such as the name of the application, features and technologies used, advantages and disadvantages, main outcomes, and other results. The content of the research was analyzed according to the research objectives.

In the initial review of four databases, a total of 160 articles were retrieved and subsequently entered into EndNote. After removing duplicates and irrelevant studies based on title, abstract, and full-text assessments, 12 articles were finally selected. The studies were conducted between the years 2015 and 2024. 100% of the applications designed for patients with IBD were aimed at treatment, 83% were for self-management of the disease, and 33% of the applications were intended for disease diagnosis. The features of IBD management applications were categorized into four groups: education, monitoring, counseling, and diagnosis and treatment.

Various mobile applications have been developed for the management of IBD, each differing in features and technologies used. While current IBD applications have limited capabilities in diagnosing disease severity, they still hold significant potential in empowering patients through education, counseling, and monitoring. The integration of artificial intelligence and decision support systems may enhance the effectiveness and reliability of these applications.

Acute severe ulcerative colitis (ASUC) is a life-treating presentation of ulcerative colitis (UC) that requires prompt initiation of treatment to avoid complication. Unfortunately, outcomes for ASUC are suboptimal, with as many as 20-30% of patients requiring colectomy. This can be challenging for patients and highlights the need to understand patient experiences and perspectives navigating ASUC.

A qualitative descriptive study utilizing semi-structured interviews was conducted to understand perspectives and experiences of patients navigating ASUC. Adult patients hospitalized for ASUC between January 2017 and March 2024 were eligible. Interviews were conducted both retrospectively among patients with a recent hospitalization and prospectively among patients within 24 h of hospitalization for ASUC. Interviews were analyzed using a well-established hybrid inductive-deductive approach.

Thirty-four patients (44.2% response rate) hospitalized for ASUC were interviewed. Hybrid thematic analysis uncovered five major themes: (1) the pervasive impact of UC on QoL and mental health, (2) challenges associated with navigating uncertainty, (3) prioritizing colon preservation, (4) bridging the divide between outpatient expectations and inpatient realities, and (5) balancing rapid symptom improvement with steroid safety. Our findings advocate for transparent approach to care, emphasizing the need for effective communication, education, and better alignment with patient values and expectations.

Five key themes were identified, each with significant implications for developing a more patient-centered approach to ASUC care. These themes captured meaningful insight into patient perceptions and experiences, identifying multiple areas for actionable interventions to improve care.

Inflammatory bowel disease (IBD) poses significant challenges for patients, requiring continuous monitoring and self-management to improve quality of life.

This study aims to investigate the viewpoints of individuals living with IBD on the use of information and communication technology (ICT) for the self-management of their condition, with a particular focus on the concept of a "smart" toilet seat as an example of ICT for IBD self-management.

We conducted an analysis of questionnaire responses obtained from 724 participants. They were encouraged to share their use cases and identify any perceived barriers associated with ICT adoption for managing their condition. To assess their responses, we used descriptive quantitative analysis, summative content analysis, and thematic qualitative analysis. We combined these results in an epistemic network analysis to look for meaningful patterns in the responses.

Of the 724 participants, more than half (n=405, 55.9%) were already using various forms of ICT for IBD self-management. The primary factor influencing their use of ICT was their affinity for interacting with technology. Distinct differences emerged between individuals who were using ICT and those who were not, particularly regarding their perceived use cases and concerns.

This study provides valuable insights into the perspectives of individuals with IBD on the use of ICT for self-management. To facilitate wider adoption, addressing privacy concerns, ensuring data security, and establishing reliable ICT integration will be critical.

The disease severity index (DSI) encapsulates the inflammatory bowel disease (IBD) burden but requires endoscopic investigations. This study developed a non-invasive DSI using faecal calprotectin (DSI-fCal) and faecal myeloperoxidase (DSI-fMPO) instead of colonoscopy.

Adults with IBD were recruited prospectively. Baseline biomarker concentrations were used to develop DSI-fCal and DSI-fMPO, and these were correlated with the original DSI, IBD-symptoms, endoscopic activity, and quality-of-life (QoL). Area under the receiver-operating-characteristics curves (AUROC) assessed DSI-fCal/DSI-fMPO as predictors of clinical and biochemical remission at six months (symptom remission and fCal <150 μg/g, respectively), and a complicated IBD-course at 24 months (disease relapse needing escalation of biologicals/immunomodulators/recurrent corticosteroids, IBD-hospitalisations/surgeries). Multivariable logistic regression assessed the utility of DSI-fCal/DSI-fMPO in predicting a complicated IBD-course at 24 months.

In total, 171 patients were included (Crohn's disease=99, female=90, median age=46y (IQR 36-59)). DSI-fCal and DSI-fMPO correlated with the original DSI (r>0.9, p<0.001), endoscopic indices (r=0.45-0.49, p<0.001), IBD-symptoms (r=0.53-0.58, p<0.001) and QoL (r=-0.57-0.58, p<0.001). Baseline DSI-fCal (AUROC=0.79, 95% CI 0.65-0.92) and DSI-fMPO (AUROC=0.80, 95% CI 0.67-0.93) were associated with 6-month clinical and biochemical remission. DSI-fCal (AUROC=0.83, 95% CI 0.77-0.89) and DSI-fMPO (AUROC=0.80, 95% CI 0.73-0.87) performed similarly in predicting a complicated IBD-course to the original DSI (pdifference>0.05). The non-invasive DSI was independently associated with a complicated IBD-course on multivariable analyses (DSI-fCal28, aOR=6.04, 95% CI 2.42-15.08; DSI-fMPO25, aOR=7.84, 95% CI 2.96-20.73).

The DSI-fCal and DSI-fMPO perform similarly in prognosticating the longitudinal disease course as the original DSI, whilst avoiding a need for an endoscopic assessment.

Providing relevant digital health information of high quality may promote treatment adherence and self-management for patients with inflammatory bowel disease. The development of digital health services is optimised by considering end users' needs.

To identify key aspects required for digital promotion of inflammatory bowel disease patients' self-management by exploring their health information needs and the preferences of both patients and healthcare professionals in relation to the digital provision of inflammatory bowel disease health services.

Data from an audit of 1,481 electronic health record summaries from an inflammatory bowel disease help line, 17 semi-structured interviews with inflammatory bowel disease patients and 2 focus group interviews with 11 healthcare professionals were analysed.

Patients primarily contacted the hospital due to concerns about symptoms, examinations and tests, and medicines. Their concerns appeared to vary according to diagnosis, gender, age and disease duration. The interviews identified two overarching themes: (1) the available health information and patients' health information needs, and (2) whishes, thoughts and preferences for a digital solution in IBD care with relevant and individualised information.

The findings delineate key aspects for developing a suitable digital health information service. Patients seek information from healthcare professionals about treatment; however, in a digital solution, they want access to relevant and practical information about the disease, treatment and self-management. Both patients and healthcare professionals saw opportunities for increasing health data availability to patients. However, healthcare professionals expressed concerns about adapting, maintaining and ensuring the relevance of patient health information without increasing their workload and, thus, reducing quality of care.

Background: The telemanagement model in chronic diseases needs older patients to have a certain level of e-Health literacy. According to Electronic Health Literacy model, factors associated with the e-Health literacy among older patients could be comprehensively investigated from individual, situational, and environmental aspects. Objectives: To investigate the e-Health literacy levels among older patients with chronic obstructive pulmonary disease (COPD) and explore associated factors. Methods: A cross-sectional study was conducted among older patients with COPD. The e-Health Literacy Scale was used to measure individuals' e-Health literacy. The multiple linear regression was applied to identify factors associated with e-Health literacy. Results: A total of 230 responses were included in the final analysis. The average score of e-Health literacy for older COPD patients was 24.66 (6.86). After adjusting the model, the results of multiple linear regression demonstrated that aging attitudes (B = 0.067, p < 0.001), technophobia (B = -0.285, p < 0.001), and self-efficacy (B = 0.431, p < 0.001) accounted for 68.3% (p < 0.001) of the total variation in e-Health literacy. Conclusion: This study identifies significant correlations of technophobia, aging attitudes, and self-efficacy, respectively, with e-Health literacy, and self-efficacy and technophobia may be constant predictive factors of e-Health literacy. In the future, intervention research on e-Health literacy should be conducted from a social psychology perspective, with particular emphasis on addressing negative aging attitudes and technophobia. That will promote the tele-management model of chronic diseases. Trial Registration: Chinese Clinical Trial Registry (ChiCTR): ChiCTR1900028563; http://apps.who.int/trialsearch/default.aspx.

We recently showed that CAPTURE-inflammatory bowel disease (IBD)-a care coordination intervention comprised of routine remote monitoring of patient-reported outcomes (PRO) and a care coordinator-triggered care pathway-was more effective at reducing symptom burden for patients with IBD compared to usual care. We aimed to understand how patients and care team providers experienced the intervention and evaluate purported mechanisms of action to plan for future implementation.

In this study, 205 patients were randomized to CAPTURE-IBD (n = 100) or usual care(n = 105). We conducted semi-structured interviews with 16 of the 100 participants in the CAPTURE-IBD arm and 5 care team providers to achieve thematic saturation. We used qualitative rapid analysis to generate a broad understanding of experiences, perceived impact, the coordinator role, and suggested improvements.

Findings highlight that the intervention was acceptable and user-friendly, despite concerns regarding increased nursing workload. Both participants and care team providers perceived the intervention as valuable in supporting symptom monitoring, psychosocial care, and between-visit action plans to improve IBD care and health outcomes. However, few participants leveraged the care coordinator as intended. Finally, participants reported that the intervention could be better tailored to capture day-to-day symptom changes and to meet the needs of patients with specific comorbid conditions (eg, ostomies).

Remote PRO monitoring is acceptable and may be valuable in improving care management, promoting tight control, and supporting whole health in IBD. Future efforts should focus on testing and implementing refined versions of CAPTURE-IBD tailored to different clinical settings.

This review aimed to explore and describe the dietary information needs of individuals with inflammatory bowel disease and sources of information.

A scoping review of English language articles and grey literature, using electronic databases with a predefined search strategy was undertaken. Data were synthesised based on the identified variables (e.g. dietary information needs and sources of dietary information) corresponding to the aims of this review.

Forty-six studies were included, reporting data from 7557 people with inflammatory bowel disease, of which 58.6% had Crohn's disease and 60.1% were males. Dietary information was rated very important and appeared to be influenced by the disease course. The need to discuss it is heightened at important stages, namely diagnosis and relapse. Dietary information was described broadly and included advice about foods to avoid and dietary advice for symptoms management. No major differences were noted in the dietary information needs of people with Crohn's disease compared to ulcerative colitis. The main sources of dietary information were the gastroenterologist (36%-98%), the internet (9%-60%) and non-dietetic professionals (84.7%).

This review highlights limited literature describing the dietary information needs of people with inflammatory bowel disease. Importantly, the limited access to specialised dietary advice for this cohort is concerning. Future studies are required to explore not only the nuances in the needs of those with active disease and in remission, but to further understand issues of access to specialised dietary advice to provide holistic person-centred care desired by this cohort.

Health Information-Seeking Behaviour (HISB) is necessary for self-management and medical decision-making among patients with inflammatory bowel disease (IBD). With the advancement of information technology, health information needs and seeking are reshaped among patients with IBD. This scoping review aims to gain a comprehensive understanding of HISB of people with IBD in the digital age.

This scoping review adhered to Arksey and O'Malley's framework and Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews frameworks (PRISMA-ScR). A comprehensive literature search was conducted in PubMed, Embase, Web of Science, PsycINFO, CINAHL, and three Chinese databases from January 1, 2010 to April 10, 2023. Employing both deductive and inductive content analysis, we scrutinized studies using Wilson's model.

In total, 56 articles were selected. Within the information dimension of HISB among patients with IBD, treatment-related information, particularly medication-related information, was identified as the most critical information need. Other information requirements included basic IBD-related information, daily life and self-management, sexual and reproductive health, and other needs. In the sources dimension, of the eight common sources of information, the internet was the most frequently mentioned source of information, while face-to-face communication with healthcare professionals was the preferred source. Associated factors were categorized into six categories: demographic characteristics, psychological aspects, role-related or interpersonal traits, environmental aspects, source-related characteristics, and disease-related factors. Moreover, the results showed five types of HISB among people with IBD, including active searching, ongoing searching, passive attention, passive searching, and avoid seeking. Notably, active searching, especially social information seeking, appeared to be the predominant common type of HISB among people with IBD in the digital era.

Information needs and sources for patients with IBD exhibit variability, and their health information-seeking behaviour is influenced by a combination of diverse factors, including resource-related and individual factors. Future research should focus on the longitudinal changes in HISB among patients with IBD. Moreover, efforts should be made to develop information resources that are both convenient and provide credible information services, although the development of such resources requires further investigation and evaluation.

Patient safety management systems in general hospitals require a comprehensive tool for assessing the expectations of inpatients across different wards. This study aimed to develop and psychometrically validate a new scale, the hospitalized patients' expectations for treatment scale-clinician version (HOPE-C), to meet this requirement.

We interviewed 35 experts and 10 inpatients while developing the HOPE-C scale. The scale was initially designed with three dimensions: clinicians' expectations regarding doctor-patient communication, clinicians' expectations regarding treatment outcome, and clinicians' expectations regarding disease management. We recruited 200 inpatients from a general hospital in China. At the same time, 51 clinicians were assigned to the enrolled patients who completed the HOPE-C to examine the reliability, validity, and psychometric characteristics of the questionnaire. We applied item analysis, assessed construct validity, evaluated internal consistency, and conducted a test-retest reliability analysis over 7 days.

Both exploratory and confirmatory analyses supported a 2-dimensional structure, comprising doctor-patient communication expectations and treatment outcome expectations, with favorable model fit parameters (root mean square residual [RMR] = 0.042, root mean square error of approximation [RMSEA] = 0.049, comparative fit index [CFI] = 0.989, Tucker-Lewis index [TLI] = 0.984). Item analysis demonstrated appropriate item design (r = 0.744-0.961). The scale exhibited strong internal consistency, with Cronbach's α values of 0.884, 0.816, and 0.840 for the overall scale, the doctor-patient communication expectation subscale, and the treatment outcome expectation subscale, respectively. The 7-day test-retest reliability was 0.996 (p < 0.001).

Our findings suggest that the HOPE-C is a reliable and valid assessment tool for measuring the expectations of inpatients in general hospitals. It effectively identifies patients' expectations concerning doctor-patient communication and treatment outcomes.

Treatment expectations reportedly shape treatment outcomes, but have not been studied in the context of multimodal therapy in Crohn's disease (CD). Therefore, the current study investigated the role of treatment expectations for subjective symptom changes in CD patients who have undergone an integrative multimodal therapy program.

Validated questionnaires were completed at the start of the treatment program and post intervention. Pre-treatment expectations and experienced symptom change were assessed with the Generic Rating Scale for Previous Treatment Experiences, Treatment Expectations, and Treatment Effects (GEEE); stress levels were quantified with the Perceived Stress Scale (PSS-10) and disease specific quality of life was quantified with the disease-specific Inflammatory Bowel Disease Questionnaire (IBDQ). We performed multiple linear and Bayesian regression to determine how expectations related to symptom change.

N = 71 CD patients (66.2% female) were included. Stronger expectations regarding symptom improvement (b = 0.422, t = 3.70, p < .001) were associated with higher experienced symptom improvement. Additionally, Bayesian analysis provided strong evidence for including improvement expectations as a predictor of improvement experience (BFinclusion = 13.78).

In line with research in other disorders, we found that positive treatment expectations were associated with experienced symptom improvement. In contrast, we found no indication that an experience of symptom worsening was associated with positive or negative baseline treatment expectations. Induction of positive expectations might be a potential avenue for improving treatment outcomes in CD therapy.

Patients with inflammatory bowel disease (IBD) are increasingly using online platforms to communicate with other patients and healthcare professionals seeking disease-related information and support. Free-text posts on these platforms could provide insights into patients' everyday lives, which could help improve patient care. In this proof-of-concept (POC) study, we applied text mining to extract patient needs from free-text posts on a community forum in Japan, holistically visualized the patients' perceptions and their connections, and explored the patient characteristic-dependent trends in the use of words.

Free-text posts written between May 11, 2020 and May 31, 2022 on the community forum were retrieved and subjected to text mining analysis. Trends in the use of words were extracted from the posts for correspondence and co-occurrence network analyses using KH Coder open-source text mining software.

Seventy-four posts were analyzed. Using text mining methods, we successfully extracted and visualized a variety of patient concerns and their connections. The correspondence and co-occurrence analyses revealed patient segment-dependent trends in the use of words. For example, patients with a disease duration of ≤5 years were more likely to use words related to emotions or their desire to change or quit their job, such as "anxiety" and "resignation." Patients with a disease duration of >10 years were more likely to use words showing that they are finding ways to live with or accept their disease, and are getting used to the lifestyle, but some patients continued to experience worsening disease.

We found that free-text posts on an IBD community forum can be a useful source of information to capture the wide variety of thoughts of patients. Text mining procedures can help visualize the relative importance of the topics identified from free-text posts. Our findings of this POC study will be useful for generating new hypotheses to better understand and address the needs of patients with IBD.

Self-management support services can improve patients' self-management ability. This study summarized the best evidence on a self-management support scheme for patients with inflammatory bowel disease based on a mobile health system to accurately describe the current status of the field and provide recommendations for healthcare workers.

Two researchers retrieved studies from computer decision support systems, guideline websites, official association websites, and databases from the establishment of the database until October 2023. The quality of the included studies was independently evaluated by two authors using the Appraisal of Guidelines for Research and Evaluation Instrument II and the 2016 version of the corresponding evaluation standards of the Australian Joanna Briggs Institute Evidence-based Health Care Center. The classification of evidence and recommendation level adopted the 2014 version of the Australian Joanna Briggs Institute evidence pregrading and recommending level system.

Fifteen studies were included, comprising one guideline, two expert consensuses, four systematic reviews, four quasi-experimental studies, and four qualitative studies. The overall quality of the included studies was moderate to high. Thirty-six pieces of best evidence were compiled for seven elements, namely, mobile health system type and functional support; mobile health system application preparation; health information recording, uploading, and presentation; zoning management of diseases and early warning of the active period; support related to health education; healthcare support team formation and services; and virtual communities.

Our study evaluated the quality of the included studies and summarized a self-management support scheme for patients with inflammatory bowel disease based on a mobile health system. The main scheme was divided into 7 parts and 36 items, which can be used as a reference for healthcare workers so that they can provide more comprehensive and scientific self-management support services for patients with inflammatory bowel disease through mobile health systems.

Inflammatory bowel disease (IBD) is a chronic digestive disease that requires continuous monitoring by healthcare professionals to determine the appropriate therapy and monitor short-term and long-term complications. The progressive development of information technology has enabled healthcare personnel to deliver care services to patients remotely. Therefore, various applications of telemedicine in IBD management have evolved, including telemonitoring, teleconsulting, teleducation, telenursing, telenutrition, and telepathology. While evidence has been provided for some telemedicine applications, targeted studies are still required. This review summarises the major studies that have evaluated telemedicine and its application in the management of IBD.

Patient adherence is a major challenge for the successful management of any chronic disease, and ulcerative colitis (UC) is no exception. Patient adherence is closely related to patient preference of medication and formulation used.

The aim of this study was to investigate patient and physician perspectives around UC treatment preference.

This study was conducted in France, Germany, Spain, and the UK. Physicians and UK inflammatory bowel disease (IBD) nurses answered an online questionnaire. In addition, adult mild-to-moderate UC patients, treated with oral mesalazine, were invited to answer a 30-min online survey which included a conjoint exercise.

400 patients, 160 physicians, and 20 IBD nurses participated in the survey. 68% of patients were taking tablets and 32% granules. Physicians stated that from their perspective patients are more adherent to tablets than granules (76% vs. 24%), patients tended to have better relief of symptoms with tablets (69% vs. 31%), and patients found tablets to be the most convenient formulation (61% vs. 39%). From the patients' perspective, when questioned which formulation they prefer, 58% answered tablets, 37% granules, and 5% none of these. When patients were asked about some negative attributes of tablets, the highest agreement was for "I would like to take fewer each day" (6.1/10) and "I wish I could take fewer at a time" (5.4/10).

The majority of UC patients in this survey prefer the tablet formulation. A high strength tablet overcoming the high pill burden could be a good solution to address patient expectations.

Inflammatory Bowel Disease (IBD) affects the quality of life. Patient education and support needs are crucial components of comprehensive chronic illness care. The main purposes of this review were to (i) explore the informational and supportive needs of these patients to improve the quality of life in the existing literature and (ii) identify the gaps related to the needs of the patients in articles.

The scoping review is based on the Daudt methodological framework, a modified version of Arksey and O'Malley. Electronic databases were extensively searched from January 01, 2000 to April 30, 2022. Four electronic databases (PubMed/Medline, CINAHL, APA PsycInfo, Psychology and Behavioral Sciences Collection, APA PsycArticles, and ProQuest) were searched using controlled vocabulary, and specific keywords. The searched terms were matched to each database. We manually searched two key journals, namely the Journal of Inflammatory Bowel Disease and the Journal of Crohn's and Colitis.

In the review, 75 studies on the assessment of the information and support needs of patients with IBD were reviewed. In this regard, 62 and 53 studies were regarding information needs and support needs, respectively. Most of the information needs of patients with IBD reported in the studies were related to diet needs, and educational needs were the most essential support needs.

Health policymakers and managers can develop care and educational programs related to this disease in health centers according to the needs of the patients. Health professionals, especially gastroenterologists, are the primary referral sources for information on patients. Therefore, gastroenterologists can take the lead in planning and educating the patients and sharing their decisions.

OSF, https://doi.org/10.17605/OSF.IO/3MWGJ.

Strategies incorporating objective disease monitoring in Crohn's disease (CD), beyond clinical symptoms are important to improve patient outcomes. Little evidence exists to explore patient understanding of CD treatment goals, nor preferences and experiences with monitoring options. This qualitative study aimed to explore patient experiences and preferences of CD monitoring to inform monitoring strategies, improve patient engagement, and optimize a patient-centered approach to care.

This study used a patient-oriented, qualitative descriptive design. Convenience and snowball sampling were used to recruit adult participants diagnosed with CD who had experience with at least 2 types of disease monitoring. Online focus groups were conducted and data were analyzed using thematic analysis.

This international study included 37 participants from Australia, Canada, United Kingdom, and the United States. Overall, participants preferred more noninvasive types of monitoring [eg, intestinal ultrasound (IUS)] but were willing to undergo more invasive monitoring (eg, colonoscopy) if required. To improve disease monitoring, participants wanted increased access to IUS, establishment of a patient-centered interdisciplinary team and access to information and self-testing. Participants identified challenges with communication between patients and providers and stressed the importance of participating in shared decision making and being equal team members in their care.

It is imperative to incorporate patient-driven preferences into how we can best structure monitoring strategies, to ensure equitable access to those preferred modalities and embrace a shared decision-making approach to disease management in CD.

Patient-centric management of inflammatory bowel disease [IBD] is important, with consensus considering patient-reported outcomes alongside clinical and endoscopic assessment by healthcare providers. However, evidence regarding patients' treatment priorities is still limited. This study aimed to elicit benefit-risk trade-offs that patients with IBD are willing to make, to help inform discussions about patient-centric treatment targets.

This was a cross-sectional online survey of adults with self-confirmed Crohn's disease [CD] or ulcerative colitis [UC] receiving IBD treatment. The impact of efficacy, administration and safety on treatment preferences was elicited using a discrete choice experiment. Relative attribute importance [RAI] and maximum acceptable risk of mild-to-moderate side effects [SEs] were estimated from a mixed logit model.

In total, 400 patients [CD: 54%; UC: 46%; female: 38.0%; age range: 18-78 years] were recruited. Efficacy, administration and safety affected treatment preferences to varying degrees, with abdominal pain being most important [RAI 33%] followed by risks of mild-to-moderate SEs [RAI 27%] and serious infections [RAI 16%]. To reduce abdominal pain from severe to moderate/mild, patients accepted an additional 18.8% or 30.6% risk of mild-to-moderate SEs, respectively. While average preferences between patients with CD and UC were similar, patients with CD placed greater importance on abdominal pain [p < 0.05], and patients with UC on bowel urgency [p < 0.05]. However, preferences varied notably.

While avoiding abdominal pain, SEs and serious infections had on average the highest treatment priority, preferences varied between patients. Treatment strategies should consider the trade-offs individuals are willing to make.

Current therapeutic options for patients with ulcerative colitis comprise monoclonal antibodies against tumor necrosis factor (TNF), alpha4/beta7 integrin, and interleukin (IL)12/23 as well as small molecules such as tofacitinib, upadacitinib, ozanimod, and filgotinib. However, many patients fail to respond to these agents or have loss of response over time. Therefore, there is a large unmet clinical need for new therapeutic agents.

Here, we review recent phase 2/3 studies in active ulcerative colitis and discuss preliminary data on the efficacy (clinical, endoscopic, and histologic remission) and safety of novel drugs including Janus kinase (JAK) inhibitors, IL23 blockers, integrin inhibitors, and S1P1R modulators.

We highlight the potential impact of these agents for the future therapeutic landscape of this disease with special emphasis on clinical impact, unmet needs, safety aspects, and advanced combination therapy.

The latest consensus standards for patients with inflammatory bowel disease published by the European Crohn's and Colitis Organisation conclude that optimizing quality of care in inflammatory bowel disease involves information and education after diagnosis. A scoping review was performed to identify educational interventions in newly diagnosed inflammatory bowel disease patients. A systematic literature search was conducted using five databases and gray literature. Inclusion criteria were studies with at least one group of patients whom were less than 2 years from their initial inflammatory bowel disease diagnosis. The review process initially identified 447 articles, resulting in four relevant studies: three randomized controlled trials and one pre-/post-test. Only one study exclusively included newly diagnosed inflammatory bowel disease patients. All studies included a multidisciplinary assessment and three were based on a group intervention, but none of them was described in enough detail to be replicated. The content was the same for all patients regardless of the time elapsed since diagnosis. Education of newly diagnosed patients does not seem to be a priority given the lack of publications meeting our criteria despite the evidence of their need. Interventions and outcomes are heterogeneous. Interventions did not consider patient needs and suggest that they centered more on the professional than on the patient. More evidence is clearly needed about this topic.