Fatigue in inflammatory bowel disease: Understanding research needs through an exploratory narrative review

© 2019 MA Healthcare Ltd Aims: To summarise the main findings from research on current understanding of fatigue in inflammatory bowel disease (IBD). Methods: A narrative review of relevant literature corresponding to IBD fatigue was conducted. Results: IBD fatigue is multidimensional and has a complex aetiology. The subjective nature and the lack of a standardised measure of fatigue add to the challenge of developing suitable and effective management methods. Although IBD fatigue is highlighted as a top-five priority research area by N-ECCO, it remains a complex and relatively unexplored area, especially when considering health-related quality of life (HRQoL) and patient experience. Conclusions: Research on the pathogenesis of IBD-related fatigue, effective measurement and its impact on IBD patients will allow the discovery of predictors of severe fatigue that requires clinical intervention, as well as the development of clear treatment pathways and structured support for IBD patients

Exploration of the impact of inflammatory bowel disease fatigue on the health-related quality of life of adults

Background: Fatigue is a frequently reported symptom of Inflammatory Bowel Disease (IBD), experienced by patients with active disease and when in remission. Fatigue related to chronic conditions plays a significant negative role in health-related quality of life (HRQoL), but patients’ experience of this have not been researched in IBD. Aim: To explore patient experience of IBD fatigue and its impact on HRQoL in adults diagnosed with IBD. Methods: A systematic literature was undertaken to explore the impact of IBD fatigue on HRQoL in adults. Search terms were developed and combined encompassing concepts of ‘Fatigue’, ‘IBD and ‘HRQoL’. A narrative synthesis was conducted. To explore patient experiences of the impact of IBD fatigue on HRQoL, qualitative, semi-structured in-depth interviews were conducted with adults with Crohn’s Disease in remission, recruited from out-patient clinics in the UK. Eligibility and medical history were confirmed at recruitment. Interviews were audio-recorded and transcribed verbatim. Thematic analysis was employed to analyse data using NVivo 12 software. Results: Eleven publications were deemed eligible for inclusion in the systematic literature review. Studies revealed experience of fatigue was significantly related to three HRQoL areas; symptom acceptance, psychosocial factors and physical activity. Interviews of 14 adults with IBD fatigue revealed that there were three key themes that reflect the patient experience: ’The new normal’ established through adaptation to, and acceptance of, IBD fatigue impact on daily life. ’Energy as a resource’ describes participants attempts to better manage fatigue through planning and prioritising tasks. ‘Keeping healthy’ encompasses participants beliefs that good nutrition, good general health and keeping active permit them to better manage fatigue. Conclusion: Adults with IBD fatigue try to establish a sense of ‘new’ normality. However, this is often at the expense leisure activities. The study also indicates that conservation of energy through planning and prioritising tasks and high levels of social support were associated with better self-reported HRQoL. Further research is required to explore physical activity-based intervention in relation to IBD fatigue

Ultrasound assessment of small bowel Crohn's disease: A mixed methods exploration of barriers and facilitators to implementation in adult NHS IBD services

Background: Crohn’s disease (CD) is a long-term condition which requires repeated disease monitoring via medical imaging, where repeated burdensome medical investigations negatively impact on patients quality of life. Small bowel ultrasound scanning (SBUS) has been shown to be similar in accuracy when compared to magnetic resonance enterography (MRE), has the potential to be quicker, less costly and improve patient experience of care, but it is not routinely used in NHS IBD care. Objectives: This thesis aims to provide insight on how best to support the implementation of SBUS in practice by collecting information about current national usage and appetite for SBUS uptake, stakeholder perceptions of the adoption of the intervention by health services and the potential impact of use of SBUS on care pathways in routine CD care. Findings from this work will contribute to the production of an implementation package to facilitate national uptake of SBUS in NHS IBD services. Methods: A scoping literature review and three research studies were undertaken throughout this programme of work. The scoping literature review was undertaken to explore clinical utility of SBUS in IBD settings. A national survey was undertaken to uncover current usage and appetite for use of SBUS in IBD settings. A qualitative semi structured interview study was undertaken to explore stakeholder perceptions of SBUS use and implementation of ultrasound in IBD settings. A care pathway analysis and cost implications analysis were undertaken to gauge the impact of the introduction of SBUS into an NHS IBD service. The quantitative data were analysed using descriptive statistics. Qualitative data were analysed using template analysis. Results: Ultrasound is reported as quicker, more acceptable to patients and safer when compared to MRE and has been shown to be similarly accurate in detecting presence and extent of small bowel CD. Ultrasound is used widely in central Europe and Canada but has not yet been embraced in the UK. Survey responses indicated that there is an appetite for the uptake of SBUS in NHS services. There is disparity in confidence levels when using ultrasound to make clinical decisions, compared to MRE. The interview study revealed that stakeholders believe that the introduction of SBUS into clinical services would be beneficial to patient experience, outcomes and cost reduction. There are concerns in relation to the availability of training for health care professionals and the belief that there are still concerns relating to accuracy of SBUS compared to MRE. Interview participants believed that the largest barriers to implementation of SBUS in the NHS were the existing practices, beliefs and behaviours of healthcare professionals which are likely to be difficult to amend. Care pathway and costs implications analysis’ showed that there are significant potential cost saving and waiting time reduction implications to the introduction of SBUS into NHS IBD services. Conclusions: Recommendations from this work which will contribute to the generation of an implementation package for SBUS include the need for well-structured and supported training for health care professionals, tools for identifying and fostering leadership roles in promoting and sustaining change and mechanisms for reviewing and adapting SBUS over time to ensure it meets the needs of stakeholders and IBD services

Ultrasound assessment of small bowel Crohn's disease: A mixed methods exploration of barriers and facilitators to implementation in adult NHS IBD services

Background: Crohn’s disease (CD) is a long-term condition which requires repeated disease monitoring via medical imaging, where repeated burdensome medical investigations negatively impact on patients quality of life. Small bowel ultrasound scanning (SBUS) has been shown to be similar in accuracy when compared to magnetic resonance enterography (MRE), has the potential to be quicker, less costly and improve patient experience of care, but it is not routinely used in NHS IBD care. Objectives: This thesis aims to provide insight on how best to support the implementation of SBUS in practice by collecting information about current national usage and appetite for SBUS uptake, stakeholder perceptions of the adoption of the intervention by health services and the potential impact of use of SBUS on care pathways in routine CD care. Findings from this work will contribute to the production of an implementation package to facilitate national uptake of SBUS in NHS IBD services. Methods: A scoping literature review and three research studies were undertaken throughout this programme of work. The scoping literature review was undertaken to explore clinical utility of SBUS in IBD settings. A national survey was undertaken to uncover current usage and appetite for use of SBUS in IBD settings. A qualitative semi structured interview study was undertaken to explore stakeholder perceptions of SBUS use and implementation of ultrasound in IBD settings. A care pathway analysis and cost implications analysis were undertaken to gauge the impact of the introduction of SBUS into an NHS IBD service. The quantitative data were analysed using descriptive statistics. Qualitative data were analysed using template analysis. Results: Ultrasound is reported as quicker, more acceptable to patients and safer when compared to MRE and has been shown to be similarly accurate in detecting presence and extent of small bowel CD. Ultrasound is used widely in central Europe and Canada but has not yet been embraced in the UK. Survey responses indicated that there is an appetite for the uptake of SBUS in NHS services. There is disparity in confidence levels when using ultrasound to make clinical decisions, compared to MRE. The interview study revealed that stakeholders believe that the introduction of SBUS into clinical services would be beneficial to patient experience, outcomes and cost reduction. There are concerns in relation to the availability of training for health care professionals and the belief that there are still concerns relating to accuracy of SBUS compared to MRE. Interview participants believed that the largest barriers to implementation of SBUS in the NHS were the existing practices, beliefs and behaviours of healthcare professionals which are likely to be difficult to amend. Care pathway and costs implications analysis’ showed that there are significant potential cost saving and waiting time reduction implications to the introduction of SBUS into NHS IBD services. Conclusions: Recommendations from this work which will contribute to the generation of an implementation package for SBUS include the need for well-structured and supported training for health care professionals, tools for identifying and fostering leadership roles in promoting and sustaining change and mechanisms for reviewing and adapting SBUS over time to ensure it meets the needs of stakeholders and IBD services

Physical activity and fatigue in adults with Inflammatory Bowel Disease (IBD): a systematic review

Background: Fatigue is frequently reported in inflammatory bowel disease (IBD). IBD has been shown to have an impact on, and be impacted by, physical activity levels in IBD patients, Yet, to date, there have been no systematic reviews considering the impact of physical activity on levels of IBD fatigue.Aim: This aim of this review is to explore the current body of knowledge of what kind of physical activity interventions are available to treat IBD fatigue.Methods: Systematic database searchs (CINAHL, EMBASE, PsychInfo, PsycARTICLES, AMED, Medline) and hand searching were conducted on 03/03/2019. Searches were restricted to ‘human’, ‘adult’, ‘primary research’ and ‘English language’publications. No time limit was set. Quality appraisal and data extraction was undertaken by at least 2 reviewers.Results: searches yielded 32 publications; 2 studies were included in the review. Physical activity is inhibited by higher fatigue levels, lowering HRQoL, but also as a means of reducing fatigue, subsequently improving HRQoL.Conclusion: There was very little data eligible for inclusion in this review, and it was not of a high quality. The findings of the review suggest that physical activity may be beneficial for IBD fatigue, but this cannot be definitively stated. Evidence suggests physical activity is safe to undertake in active disease, therefore better-quality studiesare needed in this area

Systematic review: the impact of inflammatory bowel disease-related fatigue on health-related quality of life

Background: Fatigue is frequently reported in inflammatory bowel disease (IBD) and impacts on Health-Related Quality of Life (HRQoL). HRQoL has not been systematically reviewed in IBD fatigue. Aim: To investigate what impact IBD fatigue has on HRQoL in adults with IBD.Methods: Systematic searches (CINAHL, EMBASE, PsychInfo, Medline) were conducted 25.09.2018, restricted to ‘human’, ‘adult’, ‘primary research’ and ‘English language’. Search terms encompassed concepts of ‘Fatigue’, ‘IBD’ and ‘HRQoL’. A 5 year time limit (2013-2018) was set to include the most relevant publications. Publications were screened, data extracted, and quality appraised by two authors. A narrative synthesis was conducted.Results: Eleven studies were included, presenting data from 2823 participants. Fatigue experiences were significantly related to three HRQoL areas: symptom acceptance, psychosocial wellbeing, and physical activity. Patients reporting high fatigue levels had low symptom acceptance. Psychosocial factors were strongly associated with both, fatigue and HRQoL. Higher social support levels were associated with higher HRQoL. Physical activity was impaired by higher fatigue levels, lowering HRQoL, but it was also used as a means of reducing fatigue and improving HRQoL. Quality appraisal revealed methodological shortcomings in a number of studies. Notably use of multiple measures, comparison without statistical adjustment and fatigue and HRQoL assessment using the same tool

Stakeholder-identified barriers and enablers to ultrasound implementation in inflammatory bowel disease services in the UK: a qualitative interview study.

The study sought to explore and better understand the perceptions and experiences of stakeholders in relation to the use of ultrasound for the assessment of inflammatory bowel disease (IBD) in adults in the UK. A qualitative semistructured interview study, using template analysis and normalisation process theory, was undertaken. Interviews were conducted using virtual meeting software. Fourteen participants were enrolled between 2nd of June 2021 and 6th of September 2021. Participants were from the following roles: medical gastroenterology and radiology doctors, IBD nurse specialists, patients living with IBD, healthcare service managers. Participants reported that perceived barriers included reliance on established imaging and care pathways, reluctance to change, lack of trust in ultrasound in relation to perceived lack of precision and the initial financial and time outlay in establishing an ultrasound service. Participants were enthusiastic for the uptake of ultrasound and discussed enablers to ultrasound uptake including the benefits to patients in terms of reduction in waiting times and earlier diagnosis and treatment allocation, reduced number of hospital appointments and patients having better understanding of their health. There are perceived barriers to achieving implementation of ultrasound. There is scant literature to effectively assess these reported barriers. Therefore, there is further research required in the areas of the impact of the use of ultrasound for the assessment of IBD in the UK. [Abstract copyright: © Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

Ultrasound use to assess Crohn’s disease in the UK: a survey of British Society of Gastroenterology Inflammatory Bowel Disease Group members

BackgroundData from the METRIC trial (PMID:29914843) has shown that small bowel ultrasound has very good diagnostic accuracy for disease extent, presence and activity in Crohn’s Disease (CD), is well tolerated by patients and is cheaper when compared to MRI. However, Uptake of ultrasound in the UK is limitedMethodsWe designed and conducted an online survey to assess the current usage of ultrasound throughout the UK. The survey was undertaken by BSG IBD group members between 9 June 2021 - 25 June 2021. Responses were anonymous, respondents were able to skip questions.Results103 responses were included in the data analysis Responses came from 14 different regions of the UK, from 66 individual NHS trusts. 103 respondents reported that they currently have an MRI service for Crohn’s disease, where only 31 had an ultrasound service. Numbers of MRIs per month was reported as an average of 15, with a range of 3-75. The average number of ultrasounds undertaken was reported as 8 per month, with a range of 0-50. Average time for results to be reported for MRI scans was reported as between 4-6 weeks, with a range of 2 days to 28 weeks. The average time for an ultrasound to be reported was stated as 1-4 weeks, with a range of 0-8 weeks. 26 respondents were ‘extremely confident’ when using MRI data to make clinical decisions, 5 were ‘very confident’ were somewhat confident and 3 were not so confident. Only 6 respondents stated they would be extremely confident in using ultrasound to make clinical decisions, 17 people stated they would be very confident, 20 were somewhat confident, 15 not so confident and 15 not at all confident. Of those respondents who did not have access to an ultrasound service, 72 stated that they would be interested in developing an ultrasound service.ConclusionThere is an appetite for the uptake of ultrasound in the UK for assessment of CD, however there remains a significant number of UK centres with little or no access to an ultrasound service. There is a difference in the levels of confidence that clinicians have in using ultrasound as a diagnostic tool in the UK. Further research is necessary to understand why this is the case. Results from this survey will go on to inform our future work in developing an implementation package for ultrasound in the UK in the NH

Delphi consensus survey: the opinions of patients living with refractory ulcerative proctitis and the health care professionals who care for them

© 2023 The Authors. Published by BMJ Publishing Group. This is an open access article available under a Creative Commons licence. The published version can be accessed at the following link on the publisher’s website: http://dx.doi.org/10.1136/bmjgast-2023-001139Background Refractory ulcerative proctitis presents a huge clinical challenge not only for the patients living with this chronic, progressive condition but also for the professionals who care for them. Currently, there is limited research and evidence-based guidance, resulting in many patients living with the symptomatic burden of disease and reduced quality of life. The aim of this study was to establish a consensus on the thoughts and opinions related to refractory proctitis disease burden and best practice for management. Methods A three-round Delphi consensus survey was conducted among patients living with refractory proctitis and the healthcare experts with knowledge on this disease from the UK. A brainstorming stage involving a focus group where the participants came up with an initial list of statements was completed. Following this, there were three rounds of Delphi surveys in which the participants were asked to rank the importance of the statements and provide any additional comments or clarifications. Calculation of mean scores, analysis of comments and revisions were performed to produce a final list of statements. Results In total, 14 statements were suggested by the focus group at the initial brainstorming stage. Following completion of three Delphi survey rounds, all 14 statements reached consensus following appropriate revision. Conclusions We established consensus on the thoughts and opinions related to refractory proctitis from both the experts who manage this disease and the patients living with it. This represents the first step towards developing clinical research data and ultimately the evidence needed for best practice management guidance of this condition.Published versio

An examination of resting-state functional connectivity in patients with active Crohn’s disease

Background: Alterations in resting state functional connectivity (rs-FC) in Crohn’s Disease (CD) have been documented in default mode network (DMN) and frontal parietal network (FPN) areas, visual, cerebellar, salience and attention resting-state-networks (RSNs), constituting a CD specific neural phenotype. To date, most studies are in patients in remission, with limited studies in active disease. Methods: 25 active CD cases and 25 age-, BMI- and gender-matched healthy controls (HC) were recruited to a resting-state-functional Magnetic Resonance Imaging (rs-fMRI) study. Active disease was defined as C-reactive protein>5mg/dl, faecal calprotectin>250μg/g, or through ileocolonoscopy or MRE. rs-fMRI data were analysed using independent component analysis (ICA) and dual regression. Differences in RSNs between HCs and active CD were assessed, and rs-FC was associated with disease duration and abdominal pain. Results: Increased connectivity in the FPN (fusiform gyrus, thalamus, caudate, posterior cingulate cortex, postcentral gyrus) and visual RSN (orbital frontal cortex) were observed in CD versus HC. Decreased activity was observed in the salience network (cerebellum, postcentral gyrus), DMN (parahippocampal gyrus, cerebellum), and cerebellar network (occipital fusiform gyrus, cerebellum) in CD versus HCs. Greater abdominal pain scores were associated with lower connectivity in the precuneus (visual network) and parietal operculum (salience network), and higher connectivity in the cerebellum (frontal network). Greater disease duration was associated with greater connectivity in the middle temporal gyrus and planum temporale (visual network). Conclusion: Alterations in rs-FC in active CD in RSNs implicated in cognition, attention, emotion, and pain may represent neural correlates of chronic systemic inflammation, abdominal pain, disease duration, and severity