Inflammatory Bowel Disease Self-management Research Articles

Self-Efficacy, Patient Activation, and the Burden of Inflammatory Bowel Disease on Patients' Daily Lives.

The effective management of inflammatory bowel disease (IBD) requires complex self-management behaviors. Both patient activation (the degree to which patients are willing and able to engage in care) and self-efficacy (one's confidence in performing certain behaviors) are thought to play an important role in chronic disease self-management, but patient activation is a broad concept that can be more difficult to precisely target than self-efficacy. We aimed to describe the relationship between patient activation, self-efficacy, and the burden of IBD on patients' daily lives. Patients with IBD were recruited from a single center to complete a survey including the Patient Activation Measure (PAM-13®), the IBD Self-Efficacy Scale (IBD-SES), and an IBD-specific patient-reported outcome measure. Using multivariable linear regression, we examined the relationship between IBD burden, self-efficacy, and patient activation, adjusting a priori for age, gender, IBD type, IBD medications, active corticosteroid use, anxiety, and depression. We performed a post-hoc mediation analysis to examine self-efficacy as a potential mediator in the relationship between patient activation and the burden of IBD on patient's daily lives. A total of 132 patients with IBD completed the survey (59% Crohn's disease, 41% ulcerative colitis, 52% female). Higher levels of patient activation and higher levels of self-efficacy were each associated with lower IBD burden (patient activation: ß = -1.9, p < 0.001, self-efficacy: ß = -2.6, p < 0.001). Post hoc mediation analysis confirmed that the relationship between patient activation and daily IBD burden was mediated by self-efficacy (Average Causal Mediation Effect = -1.00, p < 0.001, proportion mediated = 0.62, p < 0.001). The relationship between patient activation and IBD burden is highly mediated by self-efficacy, suggesting that self-efficacy could be a more precise target for intervention. Future studies could focus on targeting self-efficacy to build individuals' confidence in IBD self-management and testing of IBD-tailored self-management programs to ultimately improve disease outcomes.

Development and Validation of an Educational Book on Self-Management in Inflammatory Bowel Disease Based on Patient Preferences and Expert Opinions: A Methodological Study.

Self-management education resources for inflammatory bowel disease (IBD) using concepts remain infrequent. We aim to describe the development and evaluation process of educational material for self-management in IBD based on patient preferences and expert opinions. The method of this study includes two main phases of development and validation in five steps in the following order: (1) identification of information needs for patients with IBD; (2) content development with a comprehensive literature review and scientific texts related to IBD; (3) measuring the face validity of the content based on the expert opinions in the field of IBD; (4) validation of the content with the experts in the field of IBD; and (5) validation by target audiences. The expert panel comprises ten gastroenterologists, nutritionists, psychologists, gynecologists, and nurses. The total suitability score is 79.5%. The final draft version of the educational self-management material was presented to 30 IBD patients who were satisfied (n = 24; 80%) with the material. This study shows the development process and is validated for face and content validity by the academic multidisciplinary expert panel and target group. Patients and their caregivers can use this content to cope with their disease.

Review and content analysis of mobile apps for inflammatory bowel disease management using the mobile application rating scale (MARS): Systematic search in app stores

BackgroundPeople with inflammatory bowel disease (IBD) need tools for self-management of their disease with the ultimate goal of improving medication adherence and health outcomes. Mobile apps represent a novel opportunity to provide self-management for patients with IBD. Many mobile apps have been developed for IBD self-management, but more evidence is needed about the quality of these mobile apps. ObjectiveThis study evaluated mobile apps developed for the IBD community and rated the quality of these apps to provide a roadmap for future development. Materials and methodsThe Apple App Store and Google Play Store were systematically searched to identify IBD mobile apps for patients and physicians based on the IBD-related keywords. We included mobile apps that focus on IBD, are in the English language, and are free. The related app quality was evaluated independently by two reviewers using the Mobile Application Rating Scale (MARS). ResultsWe identified 401 mobile apps. After removing duplicates and unrelated apps, 44 apps were included in the review. Overall, the mean MARS scores were 3.5 (SD = 0.5) on a scale from 1.00 to 5.00, which was the acceptable range.; 12 apps got scores ≥ 4.00. The highest mean domain score belonged to the functionality dimension (mean = 3.9, SD = 0.6) and the lowest belonged to the engagement dimension (mean = 3.2, SD = 0.8). ConclusionThe MARS ratings showed that the IBD mobile apps quality meet acceptable criteria. However, more attention must be paid to design features that improve user interest and engagement, especially among children and adolescents. Healthcare professional involvement is crucial for designing mobile health apps.

Building a Self-Management Toolkit for Patients with Pediatric Inflammatory Bowel Disease: Introducing the resilience 5

Transition from pediatric to adult health care is a complex process that calls for complex interventions and collaboration between health care teams and families. However, many inflammatory bowel disease (IBD) clinical care teams do not have the resources to implement rigorous transition programs for youth. This review provides a description of the Resilience5: self-efficacy, disease acceptance, self-regulation, optimism, and social support. The Resilience5 represents teachable skills to support IBD self-management, offset disease interfering behaviors, and build resilience in adolescents and young adults transitioning to adult health care systems. These skills can also be encouraged and reinforced during routine IBD clinical care.

Profiles of Web-based Portal Users with Inflammatory Bowel Disease.

Web-based portals can enhance communication between patients and providers to support IBD self-management and improve care. We aimed to identify portal use patterns of patients with inflammatory bowel disease (IBD) to inform future web portal-based interventions and portal design. Patients with IBD receiving care at the University of Michigan between 2012 and 2021 were identified. Meta-data from electronic logs of each patient's most recent year of portal use were abstracted. Portal engagement was characterized in terms of intensity (ie, frequency of use); comprehensiveness (ie, number of portal functions used); and duration (ie, quarters per year of portal use). We used k-means clustering, a machine-learning technique, to identify groupings of portal users defined in terms of engagement features. We found 5605 patients with IBD who had accessed their portal account at least once. The average age was 41.2 years (SD 16.7), 3035 (54.2%) were female, and 2214 (39.5%) received immune-targeted therapies. We identified 3 patterns of portal engagement: (1) low intensity users (29.5%); (2) moderate intensity, comprehensive, and sustained users (63.3%); and (3) high intensity, comprehensive, sustained users (7.2%). Patients with more intense, comprehensive, and sustained use of the portal were older, female, with more comorbidities, and were more likely to receive immune-targeted therapies. Understanding distinct patterns of portal use can inform portal-based interventions and portal design. Patient portals may be particularly helpful in delivering assistance to those with comorbidities and those receiving immune-targeted therapies-many of whom demonstrate more intense, comprehensive, and sustained portal use.

EXPLORING RELATEDNESS AS SOUGHT BY ADOLESCENTS AND YOUNG ADULTS IN AN ONLINE INSTAGRAM INFLAMMATORY BOWEL DISEASE SUPPORT COMMUNITY

Individuals with chronic conditions have flocked to social media as a source of information, connection, and support. Online social groups are particularly salient for individuals with isolating or stigmatized conditions such as inflammatory bowel disease (IBD). IBD self-management is complex, ongoing, and highly individualized. Adolescents and young adults (AYAs) often struggle with IBD self-management, resulting in increased risk for poor health outcomes. AYAs with IBD are active on social media sites, but little is known about the possible drivers of motivation for AYAs to engage in online support communities.

EXPLORING RELATEDNESS AS SOUGHT BY ADOLESCENTS AND YOUNG ADULTS IN AN ONLINE INSTAGRAM INFLAMMATORY BOWEL DISEASE SUPPORT COMMUNITY

Abstract INTRODUCTION Individuals with chronic conditions have flocked to social media as a source of information, connection, and support. Online social groups are particularly salient for individuals with isolating or stigmatized conditions such as inflammatory bowel disease (IBD). IBD self-management is complex, ongoing, and highly individualized. Adolescents and young adults (AYAs) often struggle with IBD self-management, resulting in increased risk for poor health outcomes. AYAs with IBD are active on social media sites, but little is known about the possible drivers of motivation for AYAs to engage in online support communities. Self-Determination Theory proposes that behavior is intrinsically motivated by an individual’s need for autonomy, competence, and relatedness. Relatedness has been defined as a sense of group belonging and has been theorized as a key component of behavior change. However, little is known about the way in which online communities may fulfill the need for relatedness for people with chronic conditions. In this study, we aim to explore the way AYAs with IBD find relatedness in an Instagram IBD support community. METHODS We extracted public Instagram posts published between January and December 2019 in a popular IBD support group. In this group, Instagram users sent questions about IBD to the group account owner via direct message. The owner screenshotted user messages and posted these anonymous screenshots to the group, allowing other users to leave comments. We extracted posts about IBD self-management from users who indicated that they had IBD and that they were 13-24 years old or in middle school, high school, or college. Eighty-three posts were included. Then, we screenshotted and transcribed comments under each post, resulting in 1,110 unique comments. Using thematic analysis, three investigators have begun familiarizing themselves with the data, independently coding comments, and identifying emerging themes. Themes will continue to be refined through an iterative process. RESULTS From preliminary analysis, five themes have emerged: Validation, Autonomy Support, Well Wishes, Shared Identity, and Connection Within and Beyond Illness. Instagram users connected with AYAs with IBD in a variety of ways by validating their concerns, supporting their autonomy in making self-management decisions, providing online human connection, and uplifting them in their illness journeys. CONCLUSION Relatedness is a critical component of behavioral interventions, but is poorly understood in reference to self-management support in AYAs with IBD. As AYAs seek relatedness online, it is crucial to understand this population’s needs for relatedness in developing future interventions that are effective, sustainable, and tailored to the self-management needs of AYAs with IBD.

Inflammatory Bowel Disease Self-Management: Exploring Adolescent Use of an Online Instagram Support Community.

The purpose of this qualitative study was to explore the challenges adolescents with inflammatory bowel disease (IBD) experience with disease self-management as expressed in an online Instagram social support community. Public Instagram posts between January and December 2019 were manually collected from an online IBD support community. To focus on adolescent self-management needs, only posts from Instagram users who (1) indicated they had inflammatory bowel disease, (2) were 13-24 years old, or were in middle school, high school, or college were collected. Using thematic analysis, authors independently coded and identified emerging themes about self-management. Of 2,700 Instagram posts assessed for eligibility, 83 posts met inclusion criteria. Six major themes about inflammatory bowel disease self-management emerged: Desire for Normalcy, Dietary Changes, Education and Career, Healthcare System, Relationships With Others, and Symptoms and Complications. As the first thematic analysis of Instagram posts in an online inflammatory bowel disease community, results provide a crucial perspective of the concerns of adolescents with inflammatory bowel disease. Self-management challenges were wide-ranging and complex, underscoring the importance of IBD self-management in the adolescent population. Nurses should take a holistic approach to assess self-management challenges and tailor care to the specific needs of adolescents living with inflammatory bowel disease.

EXPLORING SELF-MANAGEMENT CHALLENGES OF ADOLESCENTS AND YOUNG ADULTS WITH INFLAMMATORY BOWEL DISEASE IN AN ONLINE INSTAGRAM SUPPORT COMMUNITY

Abstract PURPOSE The purpose of this qualitative study was to explore disease self-management challenges posted in an online Instagram support community by adolescents and young adults (AYAs) with inflammatory bowel disease (IBD). BACKGROUND For the estimated 6.8 million people worldwide living with IBD, effective disease self-management is paramount to supporting positive disease outcomes including quality of life. IBD self-management is highly individualized and can include a combination of medication management, ostomy management, and lifestyle modification. Self-management can be a complex process as it is often influenced by unpredictable disease trajectory. AYAs are disproportionately affected by IBD and experience myriad psychosocial and self-management challenges considering their stage of development and disease status. Youth with chronic conditions often turn to social media as a source of information and support. Instagram is a popular social media platform among AYAs, with more than one-third of users falling between 13 and 24 years of age. Harnessing this real-world data can reveal the authentic self-management challenges of AYAs with IBD. METHODS Public Instagram posts between January and December 2019 were manually extracted from an online IBD support community with over 16,7000 followers (see examples in Figure 1). We extracted posts about self-management from Instagram users who: 1) indicated they had IBD; and 2) stated they were 13-24 years old or in middle school, high school, or college. Using thematic analysis, authors independently coded and identified emerging themes about IBD self-management challenges (Figure 2). Authors discussed any disagreement about identified themes through an iterative process until consensus was reached. RESULTS Out of 2,700 posts assessed for eligibility, 83 met inclusion criteria. Six major themes about self-management emerged: Desire for Normalcy, Dietary Changes, Education and Career, Healthcare System, Relationships with Others, and Symptoms and Complications. Additionally, nine subthemes emerged: Finding Balance, Wanting a Normal Life, Transitioning to College and Work, Handling School, Understanding Diagnosis, Accessing Health Services, Navigating Treatment and Side Effects, Managing Significant Relationships, and Seeking Peers with IBD. Self-management challenges permeated every aspect of life, including relationships, school activities, and aspirations for the future. CONCLUSIONS Our findings represent the first thematic analysis of Instagram posts in an online IBD community and provide a crucial perspective of the concerns of AYAs with IBD. Self-management challenges were wide-ranging and complex, highlighting the gap between self-management needs and skills in this population. Future research should further explore these challenges to develop tailored self-management interventions to improve quality of life in AYAs with IBD.

The impact of illness intrusiveness and overparenting on depressive symptoms in parents of youth with inflammatory boweldisease.

Inflammatory bowel disease (IBD) management creates significant caregiver demands that can interfere with parents' ability to engage in a number of role functions (i.e., illness intrusiveness) well into their child's adolescence, potentially resulting in excessive or misdirected parenting (i.e., overparenting). Disruptions and limited access to routine and valued activities (e.g., family, work, and leisure) due to IBD and excessive parenting may result in parents neglecting their own personal and emotional self-care needs, increasing their risk for depressive symptoms. To explore these associations, the present study examined parents' experience of illness intrusiveness and subsequent overparenting as serial mediators in the association between disease severity and parent depressive symptoms. Participants were 146 caregivers of adolescents with IBD from an outpatient pediatric gastroenterology clinic. During a scheduled outpatient visit, parents completed measures of illness intrusiveness, overparenting, and depressive symptoms. Pediatric gastroenterologists provided ratings of disease severity. Several direct and indirect associations were observed among the modeled variables. Notably, mediation analysis revealed a significant disease severity → illness intrusiveness → overparenting → depressive symptoms serial indirect effect. Parents' experience of greater IBD-induced lifestyle disruptions is associated with increased overparenting and a heightened risk for depressive symptoms. Parents should be encouraged to establish and maintain a healthy balance between parenting and self-care/role function activities, especially during adolescence when greater youth autonomy and independence are crucial. These types of clinical efforts may reduce the likelihood of parents experiencing depressive symptoms, and have the added benefit of improving adolescent IBD self-management.

S804 Identifying Targets for Improving Inflammatory Bowel Disease Medication Adherence

Introduction: Medication adherence is challenging for patients, leading to suboptimal inflammatory bowel disease (IBD) care despite the availability of effective treatments. Patients’ self-efficacy—their ability to cope with specific stresses or challenges in disease management —is predictive of self-management behavior, such as medication adherence, for many chronic illnesses. Patient activation—the degree to which a patient is ready, willing, and able to engage in behavior change—is also critical to improving self-management, and has been associated with better IBD control. Our objective was to understand the relationship between self-efficacy, patient activation, and medication adherence to tailor improvement efforts. Methods: A convenience sample of patients with IBD were recruited to complete a survey composed of the IBD Self-Efficacy Scale, the Patient Activation Measure, and the Morisky Medication Adherence Scale. Using multivariable linear regression, we examined the relationship between three concepts of self-management: self-efficacy, patient activation, and medication adherence. We adjusted a priori for age, IBD type, disease activity using validated patient reported outcomes, and IBD severity defined by current or prior use of biologics or immunomodulators. Results: We enrolled 87 patients with IBD who were seen by a gastroenterologist at a single medical center. A majority were white (89.7%), female (63.1%), younger than 60 years (57.5%), with ulcerative colitis (41.9%) or Crohn’s disease (48.8%), and moderate-to-severe disease (70.1%). Patient activation positively correlated with self-efficacy (r=0.22; p=0.039), and self-efficacy positively correlated with medication adherence (r=0.40; p< 0.001). However, patient activation did not correlate with medication adherence (p=NS), suggesting the relationship between self-efficacy and medication adherence was not mediated through patient activation (Figure 1). In multivariable analyses, higher medication adherence was associated with a higher self-efficacy, moderate-to-severe disease, and Crohn’s disease, and higher patient activation was associated with higher self-efficacy (Table 1). Conclusion: Self-efficacy and patient activation are distinct concepts. Self-efficacy is associated with both medication adherence and patient activation suggesting its important role in IBD care. Self-efficacy may be an important target in improving IBD self-management, but needs to be further elucidated in larger studies.Figure 1.: Cumulative Incidence Curves of Time to Adverse Outcomes within one-year follow-up.Table 1.: Crude Odds Ratio and Adjusted Differences for Primary and Secondary Outcomes in Patients with Crohn’s disease Who Underwent Elective Bowel Resection with vs without Severe Protein Calorie Malnutrition

Development of self-management in pediatric inflammatory bowel disease: A qualitative exploration

Background: Self-management programs in pediatric chronic conditions, such as asthma and diabetes were effective in improving health-related outcomes. Similarly, self-management in the context of adult in inflammatory bowel disease (IBD) safely reduced healthcare costs. Nevertheless, evidence on self-management in pediatric IBD is scant. This study aims to explore self-management in pediatric IBD by exploring the childhood experience of IBD and how it is understood by the participants.Methods: Using a constructivist grounded theory approach, seven participants aged 8-17 years old were recruited in a tertiary metropolitan pediatric IBD center. Semi-structured interviews using topic guides and optional draw-and-write methods were used for data collection. Multi-level coding and constant comparison methods were utilised during data analysis.Results: The pediatric IBD self-management theory described the phenomenon of self-management through the relationship of categories that emerged from the study. Self-management starts off as a parent-dominant process that progressed to a more autonomous form with increasing disease experience. The experience was described as filled with struggles and a developing sense of control in managing these struggles. Autonomous self-management developed from the interaction of information, insight and integration. Enablers and deterrents were the contextual factors that influenced the development of self-management.Conclusions: Establishing identity both as a psychosocial developmental task and a disease-specific task is the core of self-management in childhood IBD. Future self-management programs should explore the role of structures around the child (family, school and healthcare systems) and the implementation of a proactive philosophy of involving children in managing their condition.

The Telemedicine for Patients With Inflammatory Bowel Disease (TELE-IBD) Clinical Trial: Qualitative Assessment of Participants' Perceptions.

BackgroundInflammatory bowel disease (IBD), comprising Crohn disease and ulcerative colitis, affects 1 to 3 million people in the United States. Telemedicine has shown promise in IBD. The objective of this study, telemedicine for patients with IBD (TELE-IBD), was to compare disease activity and quality of life (QoL) in a 1-year randomized clinical trial of IBD patients receiving telemedicine versus standard care. Treatment groups experienced improvements in disease activity and QoL, but there were no significant differences between groups. Study adherence to the text-based intervention was less than 80%, the targeted goal.ObjectiveTo understand adherence to remote monitoring, the goal of this qualitative assessment was to obtain TELE-IBD trial participants’ perceptions, including their recommendations for future monitoring.MethodsIn this study, patients attending 3 tertiary referral centers with worsening IBD symptoms in the previous 2 years were eligible for randomization to remote monitoring via SMS text messages (short message service, SMS) every other week, weekly, or standard care. Participants (n=348) were evenly enrolled in the treatment groups, and 259 (74.4%) completed the study. For this study, a purposive sample of adherent (N=15) and nonadherent (N=14) patients was drawn from the TELE-IBD trial population. Adherence was defined as the completion of 80% (278/348) or more of the weekly or every other week self-assessments. Semistructured interviews conducted by phone surveyed (1) the strengths and benefits of TELE-IBD, (2) challenges associated with using TELE-IBD, and (3) how to improve the TELE-IBD intervention. Interviews were recorded, professionally transcribed, and coded based on a priori concepts and emergent themes with the aid of ATLAS.ti, version.7 qualitative data analysis software.ResultsParticipants' discussions centered on 3 elements of the intervention: (1) self-assessment questions, (2) action plans, and (3) educational messages. Participants also commented on text-based platform, depression and adherence, TELE-IBD system in place of office visit, and their recommendations for future TELE-IBD systems. Adherent and nonadherent participants prefer a flexible system that is personalized, including targeted education messages, and they perceive the intervention as effective in facilitating IBD self-management.ConclusionsParticipants identified clear benefits to the TELE-IBD system, including obtaining a better understanding of the disease process, monitoring their symptoms, and feeling connected to their health care provider. Participants’ perceptions obtained in this qualitative study will assist in improving the TELE-IBD system to be more responsive to patients with IBD.

A Systematic Review of Self-Management Interventions for Children and Adolescents With Inflammatory Bowel Disease.

Self-management of inflammatory bowel disease is complex. Children and adolescents (CA) with inflammatory bowel disease (IBD) often have difficulty with managing aspects of their condition, resulting in treatment nonadherence and impaired psychosocial function. Self-management interventions are developed to help support patients and their parents/carers to effectively self-manage. The aim of this systematic review was to evaluate the efficacy of self-management interventions in children and adolescents with IBD. The review was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A systematic literature search of the following databases was conducted to identify controlled trials of interventions aiming to enhance IBD self-management in CA: Medline, Embase, Cochrane, CINAHL, and PsychINFO. Two reviewers screened articles for inclusion. Nine trials (11 articles) met the inclusion criteria. Most were underpowered, with 7 recruiting fewer than 50 participants. The interventions aimed to enhance psychological well-being (n = 5), medication adherence (n = 3), or calcium intake (n = 1). There was considerable heterogeneity in intervention content and outcomes assessment. Some benefits were reported in disease activity, adherence, and psychological well-being, but findings were inconsistent. Self-management is difficult for CA with IBD; however, this review identified only a small number of interventions to support self-management, most of which were underpowered and only 1 that was conducted outside the United States. Clinical consensus is required on which self-management activities should be recommended to patients and targeted in interventions and which core outcomes should be assessed. Adequately powered trials of interventions are required to identify how best to support self-management in CA with IBD.

Can Smartphones Help Deliver Smarter Care for Patients With Inflammatory Bowel Disease?

The addition of smartphone applications to the armamentarium of tools to help manage patients with inflammatory bowel disease (IBD) has the potential to improve care in multiple ways, including enhanced disease understanding, improved adherence to medications, accessible support networks, and earlier interventions by medical professionals when problems arise. However, at present, for patients with IBD, the development of such mobile applications is still in its infancy. We conducted a review of the literature and online resources including phone application stores (Apple and Android app stores) to assess the current availability of mobile health applications for IBD patients and opportunities to increase patient engagement. We also addressed the limitations and challenges of patient and provider adoption of mobile-based technologies for IBD self-management and remote monitoring.

Design considerations for an eHealth decision support tool in inflammatory bowel disease self-management.

Electronic health (eHealth) decision support tools have the potential to: facilitate inflammatory bowel disease (IBD) self-management, reduce health care utilisation and alleviate the pressure on overburdened outpatient clinics. The purpose of this study was to explore the perspectives of key stakeholders on the potential use of a decision support tool for IBD patients. A qualitative study using focus group methodology was conducted at a tertiary IBD centre in Melbourne, Australia in February 2015. Key stakeholders, including physicians, nurses and patients, were included in the study. Two independent reviewers undertook inductive coding and generated themes. In total, 31 participants were included in the study (including 16 males; 11 physicians; 6 nurses). An eHealth decision support tool was thought to be beneficial to facilitate IBD self-management. Four themes emerged: (i) Framework for the decision support tool - the tool should be an adjunct to current models of care and facilitate shared decision-making and patient engagement; (ii) Target population - stable patients with mild to moderate disease; (iii) Functionalities of the intervention - a web-based platform encompassing patient-reported outcomes, objective markers of disease and clinical algorithms based on international guidelines; and (iv) Design and Implementation - patients should be involved in the design. eHealth interventions are thought to be an important strategy to facilitate self-management for patients with IBD. A multi-stage iterative approach should be adopted in the design and implementation process of eHealth interventions. Patient perspectives need to be sought prior to and throughout the development of an eHealth decision support tools for IBD.

P375 Self-management in inflammatory bowel disease: A perspective of patients and caretakers

P375 Self-management in inflammatory bowel disease: A perspective of patients and caretakers

Validation of a Self-efficacy Scale for Adolescents and Young Adults With Inflammatory Bowel Disease.

Self-efficacy (SE) is a strong predictor of health outcomes in chronic diseases. The aim of the study was to develop a valid and reliable SE scale for adolescents and young adults with inflammatory bowel disease (IBD). Participants with IBD, 12 to 25 years' old, were recruited via outpatient gastroenterology clinics and online to provide demographic and clinical information and to complete psychosocial questionnaires. Reliability statistics, principle components factor analysis, and Pearson correlations with psychosocial variables assessed the psychometric properties of the IBD Self-efficacy Scale for Adolescents and Young Adults (IBDSES-A). A total of 95 participants completed the study. Internal consistency and split-half reliability of the IBDSES-A fell above the acceptable standard cutoff. Principle components factor analysis yielded 3 potential subscales. Test-retest reliability was excellent. Construct validity is supported by significant positive correlations with self-esteem and health-related quality of life, and negative correlations with depression and anxiety. IBDSES-A, a 13-item disease-specific scale to assess SE toward disease management, demonstrates good reliability and construct validity and could be a useful tool in understanding the role of SE in pediatric IBD self-management and outcomes.

EHealth for inflammatory bowel disease self-management – the patient perspective

Background: Electronic health (eHealth) solutions may help address the growing pressure on IBD outpatient services as they encompass a component of self-management. However, information regarding patients’ attitudes towards the use of eHealth solutions in IBD is lacking.Objective: The aim of this study was to evaluate eHealth technology use and explore the perspectives of IBD patients on what constitutes the ideal eHealth solution to facilitate self-management.Methods: A mixed methods qualitative and quantitative analysis of the outcomes of a discussion forum and an online survey conducted at a tertiary hospital in Melbourne, Australia between November 2015 and January 2016 was undertaken.Results: Eighteen IBD patients and parents participated in the discussion forum. IBD patients expressed interest in eHealth tools that are convenient and improve access to care, communication, disease monitoring and adherence. Eighty six patients with IBD responded to the online survey. A majority of patients owned a mobile phone (98.8%), had access to the internet (97.7%), and felt confident entering data onto a phone or computer (73.3%). Most patients (98.8%) were willing to use at least one form of information and communication technology to help manage their IBD. Smartphone apps and internet websites were the two most preferred technologies to facilitate IBD self-management.Conclusions: This study demonstrates the willifngness of patients to engage with eHealth as a potential solution to facilitate IBD self-management. Future development and testing of eHealth solutions should be informed by all major stakeholders including patients to maximise their uptake and efficacy to facilitate IBD self-management.

The Role of Patient Self-efficacy in Inflammatory Bowel Disease Self-management

The Role of Patient Self-efficacy in Inflammatory Bowel Disease Self-management