Developing a web-based self-management intervention for symptoms of fatigue, pain and urgency in Inflammatory Bowel Disease (Preprint)

2021 ◽  
Author(s):  
Louise Sweeney ◽  
Sula Windgassen ◽  
Micol Artom ◽  
Christine Norton ◽  
Sophie Fawson ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Self Management ◽  
Delivery Mode ◽  
Evidence Based ◽  
Management Intervention ◽  
Emotional Factors ◽  
Digital Intervention ◽  
Cognitive Behavioural ◽  
Inflammatory Bowel

BACKGROUND Empirical studies and systematic reviews demonstrate the role of biological, cognitive, behavioural and emotional factors in fatigue, pain and urgency in inflammatory bowel disease (IBD). Behavioural management that addresses the cognitive, behavioural and emotional factors, that is offered alongside medical treatments is seldom available to people with IBD. Digital interventions provide a potentially scalable and cost-effective way of providing behavioural support to patients. OBJECTIVE This paper aims to describe the process of developing a supported digital self-management intervention for fatigue, pain and urgency in IBD using theory, evidence-based approaches and stakeholder input. METHODS The Medical Research Council framework for complex health interventions and the Person-Based Approach were used to guide intervention development consulting with 87 IBD patients and 60 nurses. These frameworks informed the selection and use of a theoretical model, which subsequently guided cognitive behaviourally-based intervention content. They also guided the design of tailored digital intervention pathways for individuals with IBD, matched to predominant symptoms. RESULTS A trans-symptomatic cognitive behavioural framework of symptom perpetuation was developed for the symptoms of fatigue, pain and urgency in IBD. A logic model was used to define intervention techniques. Patient feedback and qualitative interviews refined website content and functionalities, including use of visual aids, email reminders and graphical tracking of symptoms. Nurse focus groups informed the volume and delivery mode of therapist ‘facilitator’-support. Feasibility testing with 31 patients demonstrated accessibility (scoring 9.43/10), ease (scoring 8.07/10), clarity and relevant tone of the intervention. The final intervention consisted of 12 online sessions (8 core and 4 symptom-specific) with one 30-minute facilitator phone call following Session 1 and subsequent in-site messaging. CONCLUSIONS Use of theory and integration of stakeholders’ views throughout informed development of an evidence-based digital intervention for fatigue, pain and urgency in IBD. This is the first online self-management intervention designed to address these multiple symptoms with the aim of improving quality of life and reducing symptom burden in IBD. The intervention is being tested in a large multi-centre randomised controlled trial.

Inflammatory bowel disease nurses' views on taking on a new role to support an online self-management programme for symptoms of fatigue, pain and urgency: a qualitative study to maximise intervention acceptance

2021 ◽  
Vol 19 (9) ◽  
pp. 28-35
Author(s):  
Chanais Matthias ◽  
Sophie Fawson ◽  
Li Yan ◽  
Louise Sweeney ◽  
Rona Moss-Morris ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Self Management ◽  
Nurse Perception ◽  
Management Intervention ◽  
Sustainable Implementation ◽  
Cognitive Behavioural ◽  
Inflammatory Bowel ◽  
Specialist Nurses

Background: Patients can be empowered through self-managing their inflammatory bowel disease (IBD) symptoms. It is important to understand how specialist IBD nurses can practically support patients to do this. Aim: To explore the perceptions of IBD specialist nurses about the implementation of a proposed nurse-guided online cognitive behavioural self-management intervention to manage symptoms of fatigue, pain and urgency. Methods: Five semi-structured focus groups (45 participants) were conducted with IBD nurses, and themes were identified through thematic analysis. Findings: Four themes were identified: (1) role of nurse as a facilitator; (2) nurse competence in facilitating the intervention; (3) nurse perception of patient needs; and (4) intervention implementation. Conclusions: The results of this study helped to refine the proposed guided online intervention with a view to sustainable implementation in clinical practice. Refinements included in-depth training and minimisation of additional workload for nurses through reducing patient contact, including an online messaging system for communication with patients.

Text4IBD: Feasibility, acceptability, and engagement with a mHealth self-management intervention for people with inflammatory bowel disease (Preprint)

2021 ◽  
Author(s):  
Jacob A Rohde ◽  
Edwin B Fisher ◽  
Marcella H Boynton ◽  
Deen Freelon ◽  
Dennis O Frohlich ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Text Messaging ◽  
Controlled Trial ◽  
Self Management ◽  
Digital Medium ◽  
Management Intervention ◽  
Use Of Resources ◽  
Inflammatory Bowel ◽  
Secondary Outcomes

BACKGROUND mHealth technologies can be useful for providing disease self-management information and support to people with inflammatory bowel disease (IBD). OBJECTIVE This study tested a self-management text messaging intervention for people with IBD. Our goal was to examine intervention feasibility, acceptability, and engagement, and to preliminarily evaluate improvements in certain self-reported health outcomes among participants. METHODS We developed a text messaging program called “Text4IBD.” The program sent daily support messages and resources about disease self-management over the course of a 2-week, single group, pretest-posttest intervention to participants (N=114) diagnosed with IBD. We examined intervention feasibility and acceptability, as well as engagement through Text4IBD message topic recall and use of resources (i.e., visiting supplemental websites recommended by the Text4IBD program). We also assessed pretest-posttest measures of IBD-related distress, self-efficacy, perceived support, use of coping strategies, and medication adherence. Analyses examined participant evaluations of the intervention and compared pretest-posttest changes in secondary outcomes using paired-samples statistics. RESULTS Nearly all participants were receptive to Text4IBD and viewed the program as feasible and acceptable. In addition, most participants (98%) recalled at least one of the message topics sent by the program and 79% self-reported engaging with at least one of the external self-management resources recommended by the Text4IBD program. Pretest-posttest results showed reduced IBD-related distress (M=3.33 vs. M=2.86; p<.001) and improvement on most other secondary outcomes. CONCLUSIONS Findings from this work highlight the value of text messaging as a useful digital medium for providing support to people with IBD, particularly for those who may struggle with disease-related distress. Text4IBD was highly feasible and acceptable and may help people self-manage their IBD. Future work should aim to evaluate this program in a randomized controlled trial in clinical settings.

scholarly journals N05 A Systematic Review of Self-Management Intervention Study for Patients with Inflammatory Bowel Disease

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S610-S610
Author(s):  
M Iizawa ◽  
L Hirose ◽  
A Tairaka ◽  
N Maya
Keyword(s):  
Inflammatory Bowel Disease ◽  
Health Care Providers ◽  
Bowel Disease ◽  
Action Plan ◽  
Risk Of Bias ◽  
Self Management ◽  
Care Providers ◽  
Inclusion Criteria ◽  
Management Intervention ◽  
Inflammatory Bowel

Abstract Background Patients with inflammatory bowel disease (IBD) have to deal with abdominal symptoms for a long time because the disease often develops at a young age, and radical treatment has not been established. To prevent worsening of symptoms associated with IBD and delay the progression of the disease, and lead a better daily life, patients must self-manage in their daily lives. At this moment, it is not clear which kinds of self-management are effective for IBD patients. Therefore, we conducted a systematic literature review (SLR) to clarify the present status and efficacy of self-management for IBD patients and find out the effective methods of self-management intervention. Methods The SLR was conducted in accordance with the methods recommended by the Cochrane Collaboration Handbook7, to reduce the risk of bias and errors. The searches were performed in Embase, Medline, and Cochrane databases. Additionally, the PsychInfo and the cumulative index of nursing and allied health literature (CINAHL) databases were searched, and relevant articles were included as other sources. Abstracts and full texts were screened to select relevant articles based on the inclusion criteria. A quality assessment was undertaken by using the Cochrane risk of bias tool checklist. Results Fifty studies met the inclusion criteria and were finally included in this review. In 31 studies, the overall population of IBD patients was included. Fourteen studies included only UC patients, 5 studies included only CD patients. Among 50 studies, 33 studies have statistically significant differences in the outcomes. We categorized the interventions and outcomes of all the studies based on Barlow’s study in 2002 and analyzed the efficacy of the intervention on the outcomes. The most common intervention was informational, subsequently management of psychological effects. The most common outcome was Inflammatory Bowel Disease Questionnaire (IBDQ). We found that psychological management and interventions related to problem-solving, goal setting, action plan, and coping skills had a positive effect on the body and psychology of IBD patients. There were six studies that investigated the effects of intervention by online medical care. Half of the online intervention showed an improvement in the use of medical services. Conclusion It is important for IBD patients and health care providers to work together to share the problem, followed by setting goals and decide on an action plan. To succeed in this process, multidisciplinary collaboration is necessary and continuous support by health care providers will be meaningful for IBD patients.

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