Inflammatory Bowel Disease Service Research Articles

Flare to care – future management of long-term conditions

To promote citizens with long-term conditions as authors of their own health data and competent self-managers supported by specialist clinical guidance that is tailored to their situation through a novel technology-driven management solution. Through close collaborative working with patients, clinical commissioning groups and demand for an out-of-hospital experience, the inflammatory bowel disease (IBD) service at East Surrey Hospital (ESH) was radically redesigned. In 2014, a new model of care that put patients at the centre of the care pathway and opened access to all patients with IBD through telephone and email support enabled citizens …

Inflammatory bowel disease and medical assessment service

Inflammatory bowel disease and medical assessment service

Process and Systems: A population-based model of care for people with inflammatory bowel disease – patient-reported outcomes

The NHS was not designed to provide ongoing support for people with long-term conditions. Conventional outpatient care relies on a diary-based appointment system, with regular follow-up offered to patients with a chronic disorder, not always tailored to clinical need. In contrast, at East Surrey Hospital, open access to the inflammatory bowel disease (IBD) service through telephone, email and a web-based portal known as Patients Know Best is offered to all people with IBD, putting them at the centre of the care pathway. This guides and directs those with the greatest clinical need to the clinician with the most appropriate clinical expertise to provide high quality consistent care. Over a 3 month period in 2015, the service avoided 20 hospital admissions, 34 emergency department attendances and 110 outpatient appointments. There is a demonstrable improvement in perception of IBD control and in the patient activation measure, with 66% of those who have used the open access service demonstrating medium to high levels of activation, compared with 11% in those new to the service.

Development of educational resources for patients and health professionals to enhance the inflammatory bowel disease (IBD) service

Diet and nutrition problems are extremely common in patients with IBD – Crohn’s disease and ulcerative colitis (UC). The UK IBD Standards (NICE 2015) recommend that in order to promote patient centred care all patients with IBD should have access to a dietitian and nutritional resources. However, many patients do not need the specialist services of a dietitian, but there is a need to improve awareness of the importance of good nutritional intake and to enable early interventions that can be delivered by other health professionals. Patient self-management should also be supported. Improving knowledge on diet and IBD to ensure nutritional adequacy and preventing nutritional depletion, managing food intolerances, symptom control, are just some aims of nutritional care.

Evaluation of an inflammatory bowel disease service to drive sustainable improvement

Evaluation of an inflammatory bowel disease service to drive sustainable improvement

Nonalcoholic Fatty Liver Disease in Inflammatory Bowel Disease: Prevalence and Risk Factors.

Nonalcoholic fatty liver disease (NAFLD) is common in inflammatory bowel diseases (IBD). Herein, NAFLD prevalence and risk factors in a large IBD cohort were evaluated and compared to that of a non-IBD sample. Crohn's disease/ulcerative colitis outpatients referred to IBD service of our Gastroenterology Unit were enrolled. Subjects affected by functional and motor gastrointestinal disorders, in whom IBD was ruled out, referred to general outpatient service in the same area, were considered as nonIBD group. Exclusion criteria were based on previous diagnosis of nonNAFLD chronic liver diseases and secondary causes of fat liver overload. Characteristics of IBD and liver status were collected. Risk factors for metabolic syndrome were analyzed. Ultrasonographic presence and degree of steatosis were assessed. Data were examined by univariate and multivariate analyses. For this study 465 IBD and 189 non-IBD subjects were consecutively enrolled. NAFLD was found in 28.0% and 20.1% in IBD and non-IBD subjects, respectively (P = 0.04). IBD patients with NAFLD were younger than non-IBD ones. There was no significant difference in steatosis grade and association between NAFLD and IBD behavior, extension, activity, and drugs. In the IBD group, multivariate analysis demonstrated that NAFLD was independently associated to metabolic syndrome (OR=2.24, 95%CI 1.77-28.81), diabetes (OR=1.71, 95%CI 1.43-12.25), fasting blood glucose (OR=1.36, 95%CI 1.13-1.68), and abdominal circumference (OR=1.68, 95%CI 1.15-14.52). NAFLD is more common and occurs at a younger age in IBD than in nonIBD subjects. However, further investigation is required to ascertain possible NAFLD pathogenic IBD-related factors other than conventional/metabolic ones. 10.1093/ibd/izy051_video1izy051.video15774874877001.

P721 Psychological care is needed and welcomed by patients with inflammatory bowel disease under routine care

Mental Health issues (MHIs) are common in people with inflammatory bowel disease (IBD) and are associated with reduced quality of life and poor disease course. Despite this, psychological support is not routinely provided in IBD outpatient settings. We report on a two-year trial of integrated psychological care in IBD management. Potential participants were recruited from an established IBD service over 12 months. Psychological screening questionnaires included the Hospital Anxiety and Depression Scale, Kessler 6 Scale of Psychological Distress, Morisky Medication Adherence Scale and Assessment of Quality of Life measure. Psychological therapy was offered where scores indicated likely need via either an on-site psychologist or an external referral. Follow-up data were collected 12 months after initial screening. In total, 490 patients were approached: 68% participated in screening and more than half scored within clinical range (55%). Opiate or psychological drug use significantly increased the likelihood of distress (OR = 5.80, p = 0.010, OR = 11.26, p < 0.000, respectively). Half of those with likely MHIs accepted psychological support. Anxiety, depression and general distress were negatively related to quality of life and medication adherence. Anxiety was associated with greater numbers of emergency presentations (r = 0.123, p = 0.025) and appointment cancellations (r = 0.154, p = 0.005). 63% of patients who accepted support saw the on-site psychologist; 57% of these completed or are continuing treatment. Patients were 5.8 times more likely to engage in treatment if allocated support within service compared with externally. At 12 month follow-up patients who accepted support experienced significant improvements across most MH outcomes: Mean reduction in scores Mean reduction in scores Patients who needed but declined support demonstrated a similar pattern of improvement. There was no overall change in IBD activity over 12 months. Psychological screening was widely accepted and easily integrated within the service, with a high proportion of patients needing support. Whilst support was generally accepted, engagement was greater within service compared with external. At 12 months those who accepted support had significant improvements. This trial highlights the need, feasibility and acceptance of psychological care being integrated into routine IBD management. Further follow-up is needed to examine whether better psychological support might reduce healthcare utilisation or enhance IBD outcomes.

N026 IBDoc® self-care/point-of-care calportectin test: Early value in a district general hospital inflammatory bowel disease service

Faecal Calprotectin samples at the trust are a current send away test. These can take 3–6 weeks to come back and while the value of the result is high even with these lead times; a faster result is desirable. Patients who may be having distressing symptoms and the trust can benefit. Initiating treatment quickly avoiding admission and the spiralling costs seen in IBD patients who are admitted to hospital.1 The test requires access to a smart phone by the patient, they need to download an App called IBDoc® and calibrate their camera. (i) The plan is to use the kit in two ways to maximise the benefits. (ii) As a point of care with the sample being collected by the patient and the test carried out by the IBD nurses. (iii) As a self-test. 18 tests were provided to trial and one of the nurses underwent face-to-face training, this took backed up with online support materials. The IBD Nurse found the training to be effective it took approximately 20 min’s of an IBD nurses time to carry out the test. The results were compared using the same stool sample to send away to the current provider. Of the tests, 15 were completed, discrepancies between results (Figures 1 and 2) have two likely reasons. Tests completed by IBD nurse. Tests completed by IBD nurse. Tests completed by patients. Tests completed by patients. First, the IBDoc® results are higher this is thought to be because of the freshness of samples. Individuality of calprotectin results was noted by one study2 not just between individuals but between samples taken at different times of day from the same person. Secondly, the assays used are different and a different result is expected because of this. Comparing the two has helped us understand the new results and will allow us to interpret future results effectively. A small survey of the patients was conducted seven patients that responded found the test easy to use and thought it had improved their access to treatment. The results in Figure 1 shows that at least one hospital admission was avoided, as a fast-track of treatment to Infliximab occurred. The IBDoc® adds value to patient care, it enhances the patient’s journey allowing quick treatment decision to be made saving at least 1 hospital admission during this small trial of the product. Patients reported that they felt their care was enhanced because of it. Using this test with remote monitoring software may save the need for face-to-face follow-up. 1. Ghosh N, Premchand P. A UK cost of care model for inflammatory bowel disease. BMJ, 2015;6:169–74. 2. Lasson A, Stotzer PO, Öhman L, et al. The intra-individual variability of faecal calprotectin: a prospective study in patients with active ulcerative colitis. J Crohn's Colitis, 2014;9:26–32.

P795 A specialised inflammatory bowel disease service provides equality of access to healthcare, irrespective of deprivation indices

P795 A specialised inflammatory bowel disease service provides equality of access to healthcare, irrespective of deprivation indices

Recomendaciones del Grupo Español de Trabajo en Enfermedad de Crohn y Colitis Ulcerosa (GETECCU) y de la Confederación de Asociaciones de Enfermedad de Crohn y Colitis Ulcerosa (ACCU) para el manejo de los aspectos psicológicos en la enfermedad inflamatoria intestinal

AimsTo establish recommendations for the management of psychological problems affecting patients with inflammatory bowel disease (IBD). MethodsA meeting of a group of IBD experts made up of doctors, psychologists, nurses and patient representatives was held. The following were presented: 1) Results of a previous focal group, 2) Results of doctor and patient surveys, 3) Results of a systematic review of tools for detecting anxiety and depression. A guided discussion was then held about the most important psychological and emotional problems associated with IBD, appropriate referral criteria and situations to be avoided. The validated instrument most applicable to clinical practice was selected. A recommendations document and a Delphi survey were designed. The survey was sent to the group and to a scientific committee of the GETECCU group in order to establish the level of agreement with these recommendations. ResultsFifteen recommendations were established linked to 3 key processes: 1) What steps should be taken to identify psychological problems at an IBD appointment; 2) What are the criteria for referring patients to a mental health specialist; 3) How to approach psychological problems. ConclusionsResources should be made available to healthcare professionals so that they can treat these problems during consultations, identify the disorders which could affect the clinical course of the disease and determine their impact on the patient's life in order that these can be treated and followed up by the most suitable professional. These recommendations could serve as a basis for redesigning IBD services or processes and as justification for the training of healthcare personnel.

Implementing IBD Registry audit tools in a nurse-led inflammatory bowel disease service at a district general hospital

Inflammatory bowel disease (IBD) is a chronic condition with no known cure. Continual auditing of patients is an important part of developing and refining therapies, including biologics, for inducing and maintaining remission. Between 2006 and 2016, the IBD National Audit gathered data that showed how services should improve standards to meet patient needs. This was followed by the IBD Registry, a multi-agency initiative to enable local teams to electronically record clinical data at the point of care to benefit patients, clinicians, commissioners and managers. The service integrates with existing hospital systems and uses a patient management system (PMS), a web tool for real-time data collection and a data visualisation tool for biologics. As of 2017, there were 99 participating sites, with data from 31 614 patients. A district general hospital successfully implemented the registry auditing tools, despite initial administrative challenges; the IBD team have used the data to demonstrate the value of the specialist nursing service, expanding it by recruiting another 0.6 whole-time equivalent nurse. The PMS offered more robust tools for monitoring complex, high-cost treatments, such as biologics.

Development of a nurse-led paediatric inflammatory bowel disease service

The incidence of paediatric-onset inflammatory bowel disease (IBD) is increasing, and treatment pathways are becoming more complex. Therefore, it is necessary to develop services that are able to manage these patients appropriately with consideration of national and international guidelines. It is important to recognise children are not just small adults and their needs are different to adult patients with IBD. This article discusses the process of establishing a paediatric IBD service at Northwick Park Hospital with the support of the adult IBD nursing service at St Mark's Hospital. Both hospitals are co-located on the same site as part of the London Northwest Healthcare Trust. The new role was designed to be managed jointly by the paediatric matron and adult IBD lead nurse to ensure the appropriate aspects of both specialties were reflected in the new service.

Establishing the aims, format and function for multidisciplinary team-driven care within an inflammatory bowel disease service: a multicentre qualitative specialist-based consensus study

ObjectiveTo obtain a specialist-based consensus on the aims, format and function for MDT-driven care within an inflammatory bowel disease (IBD) service.DesignThis was a prospective, multicentre study using a Delphi formal...

Inflammatory Bowel Disease Clinical

Inflammatory Bowel Disease Clinical

Integrated psychological care in Inflammatory Bowel Disease outpatients: Early data from a new initiative.

Introduction: Psychological issues are known to be prevalent in people with Inflammatory Bowel Disease (IBD), and are risk factors for poor outcomes such as hospitalisation, low medication adherence and persistent smoking. Despite this, psychological care is not routinely provided to IBD patients in outpatient settings. Short description of practice change implemented: At the Royal Adelaide Hospital, psychological screening and intervention have been integrated into the IBD service. Screening measures are administered at scheduled outpatient appointments, and individual psychological intervention is offered to patients where results indicate likely need. Aim and theory of change: This study aims to explore the possible benefits of incorporating psychological screening and therapy in an already established IBD service. By improving accessibility to psychological care and bypassing potential barriers, the aim is to improve patient outcomes (mental health, medication adherence, quality of life), and possibly healthcare utilisation. Targeted population and stakeholders: The target population is outpatients of the Inflammatory Bowel Disease Service at the Royal Adelaide Hospital, South Australia (which comprises approximately 1200 patients). Gastroenterologists and IBD nurses in the team are helping the psychologist with the integration of these changes. Timeline: The initial data collection phase is currently being conducted between September 2015 and September 2016. Twelve-month follow-up data will then be collected, concluding in September 2017. Highlights: This is a novel initiative in IBD healthcare, with early data uncovering a high need for psychological support. To date, 380 patients in the service have been approached, with 249 (66%) participating. 137 (55%) participants scored within the clinical range on mental health screening questionnaires. Fifty-eight participants (42% of those with clinical results) subsequently accepted psychological support. The screening process has so far been easy to implement, with positive feedback from both patients and staff. Comments on sustainability: The current initiative is a pilot study to explore the importance of psychological support in IBD patients and the usefulness of a more holistic approach to IBD healthcare. Study outcomes will inform both funding requirements and health practitioners regarding the need to address psychological factors in chronic disease management. Comments on transferability: Early data highlights the need to address psychological factors in IBD patients within the hospital setting. Similar services could be implemented in other hospitals in Australia and around the world, subject to funding. Conclusions :(key findings) Outcomes to date support the need for, and acceptability of, the integration of psychological care in the routine care environment. Discussions: Results are so far promising and support our hypotheses. Data collection will continue until September 2017 when analysis of longer-term outcomes will be possible. Lessons learned: While the initiative is still being piloted, initial evidence for the usefulness of integrating psychological support for IBD outpatients is solid.

PTH-111 Clinical and psychosocial predictors of abdominal pain frequency in patients with inflammatory bowel disease

Introduction Pain is a commonly experienced and burdensome symptom in patients with Inflammatory Bowel Disease (IBD). A substantial number of patients continue to experience pain while the disease is in remission. Research exploring factors in IBD-pain is sparse. This study aimed to explore sociodemographic, clinical and psychosocial factors associated with pain frequency in patients with IBD. Method Patients recruited from outpatient IBD services completed the United Kingdom Inflammatory Bowel Disease Questionnaire (UK IBDQ) and a number of sociodemographic, clinical and psychosocial measures. In the secondary analysis of these data, item 13 from the UK IBDQ measuring pain frequency, “On how many days over the last two weeks have you felt pain in your abdomen?”, was utilised as the primary outcome. Sociodemographic, disease-related and laboratory data were retrieved from patients’ hospital electronic medical records. Patients completed a number of self-report measures including: IBD-Fatigue Scale (IBD-F) and Multidimensional Fatigue Inventory (MFI), Hospital Anxiety and Depression Scale (HADS), IBD-Distress Scale (IBD-DS), Cohen Perceived Stress Scale (PSS), Brief Illness Perceptions Questionnaire (BIPQ) and Cognitive and Behavioural Responses to Symptoms Questionnaire (CBSQ). Univariate and multivariate analyses were conducted to test the relationship between pain frequency and sociodemographic, clinical and psychosocial variables. Results 182 patients with IBD took part in the study (57% female, 64% Crohn’s Disease, mean age 37.0 years). In univariate analyses, greater pain frequency was significantly associated with disease activity and fatigue. Female patients, those with active disease and taking steroids reported significantly more pain frequency. All emotional, cognitive and behavioural factors in psychosocial measures had significant positive correlations with pain frequency. In multivariate analyses, disease activity (p=0.01) and fatigue measured by the MFI (p=0.04), were significant predictors of pain frequency and explained 26% of the variance. Emotional, cognitive and behavioural factors were not found to predict pain frequency. Conclusion Fatigue and disease activity were independent predictors of pain frequency in patients with IBD. Utilising a single pain item from the IBDQ, none of the psychosocial factors were found to predict pain frequency. Further research, using more comprehensive pain measures, capturing pain severity and frequency is required to explore the relationship between pain and psychosocial factors in IBD. This knowledge may help in the development of pain management interventions. Disclosure of Interest None Declared

Implementing a self-management strategy in inflammatory bowel disease (IBD): patient perceptions, clinical outcomes and the impact on service

IntroductionPatient self-management and its service integration is not a new concept but it may be a key component in the long-term sustainability of inflammatory bowel disease (IBD) service provision, when...

P125 Rapid increase in pan-treatment refractory Crohn's disease after transition to adult services: a regional cohort study

Background: Inflammatory bowel disease (IBD) presents in childhood in up to 15% of cases. Paediatric onset IBD (PIBD) has a more extensive and dynamically changing phenotype and a faster rising incidence than adult-onset IBD. We aimed to evaluate rates of treatment refractory disease at and then following transition to adult services. Methods: A prospective PIBD database identified a cohort of all patients discharged from our regional service since 01/01/07. A retrospective study of patients graduating from paediatric to adult IBD services through a transition process, transition event (single joint clinic) or transfer until 31/12/13 was conducted with post transfer follow-up (FU) data at a minimum of 1 year to last adult FU (LAFU). Pan-treatment exposure (PTE) was defined as exposure to all of azathioprine (AZA) or mercaptopurine (MP), methotrexate (MTX), infliximab (IFX) and adalimumab (ADA). Pan-treatment refractory (PTR) disease as those refractory (primary non-response [PNR], loss of response [LOR] or intolerance) to all of these therapies. We used the Montreal classification to describe disease location (L) and behaviour (B) phenotypes. Psychological co-morbidity was defined as a formal psychiatric diagnosis, regular psychiatry/psychology input (or intention for this if repeated family refusal), documented anxiety or depression and deliberate self-harm. Results: 138 patients graduated to adult services, 69% (95/138) had Crohn's disease (CD); 59% (56/95) male, 76% (72/95) with extensive disease (L3 or L3+L4) and 22% (21/95) B2 or B3 disease at time of transfer. Median (IQR) age at transfer 17.8 years (17.3, 18.4) and median (IQR) disease duration at transfer 5.4 years (4.6, 7.6). Median (IQR) length of FU post-transfer was 3.3 years (2.1, 5.1). 12% (11/95) had PTE with 4% (4/95) having PTR disease by time of transfer. PTE rates increased significantly to 26% (21/82) p=0.009 at LAFU and PTR disease to 18% (15/82) p=0.003; 13 patients lost to follow-up. 90% (19/21) of those with PTE had extensive disease and 48% (10/21) had B2 or B3 disease by LAFU. 80% (12/15) patients with PTR disease required bowel resection or a defunctioning stoma by LAFU, compared with 37% (30/82) of the whole CD cohort p=0.002. 24% (5/21) of those with PTE had significant psychological co-morbidity by LAFU. Conclusions: Our novel data show that pan-treatment exposure in paediatric-onset CD is already significant by time of transfer to adult services and continues to increase to affect 26% of this regional cohort within a relatively short period of adult follow-up. 18% of paediatric-onset CD patients have failed all medical treatments by LAFU and 71% with PTE require resectional or defunctioning surgery to manage disease.

Co-designing inflammatory bowel disease (Ibd) services in Scotland: findings from a nationwide survey.

BackgroundThe Scottish Government’s ambition is to ensure that health services are co-designed with the communities they serve. Crohn’s and Colitis UK and the Scottish Government acknowledged the need to review and update the current IBD care model. An online survey was conducted asking IBD patients about their experiences of the NHS care they receive. This survey was the first step of co-designing and developing a national strategy for IBD service improvement in Scotland.Aim: To explore IBD patients’ experiences of current services and make recommendations for future service development.MethodsThis study was part of a wider cross-sectional on-line survey. Participants were patients with IBD across Scotland. 777 people with IBD took part in the survey. Thematic analysis of all data was conducted independently by two researchers.ResultsThree key themes emerged:Quality of life: Participants highlighted the impact the disease has on quality of life and the desperate need for IBD services to address this more holistically.IBD clinicians and access: Participants recognised the need for more IBD nurses and gastroenterologists along with better access to them. Those with a named IBD nurse reported to be more satisfied with their care.An explicit IBD care pathway: Patients with IBD identified the need of making the IBD care pathway more explicit to service users.ConclusionsParticipants expressed the need for a more holistic approach to their IBD care. This includes integrating psychological, counselling and dietetic services into IBD care with better access to IBD clinicians and a more explicit IBD care pathway.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-016-1490-7) contains supplementary material, which is available to authorized users.

The impact of an inflammatory bowel disease nurse-led biologics service.

Southampton General Hospital provides inflammatory bowel disease (IBD) services for a population of 650 000. Biological agents have impacted hugely on IBD but are costly drugs requiring careful supervision. These challenges led us to develop a specialist nurse-led biologics service to improve patient care. A 2010 case note audit highlighted areas for improvement in monitoring biologics and follow-up. A business case was developed to establish an IBD nurse to ensure identification and appropriate screening, education and review of biologics patients. A gain share was agreed with the local Care Commissioning Group (CCG) and £60 000 invested. Outcomes were reaudited in 2014. Biologic use has grown rapidly from 90 patients in 2011 to 330 in 2014. All records are now kept in a centralised database. Infection screening improved from 79% to 100%. In 2014, 96% of patients had follow-up ≤4 months post-induction to assess response, but two patients were seen at 7 months. 80% were followed up again at 9-12 months (100% at 9-14 months), all with treatment decisions. The initial investment was recouped via commissioners funding 368 additional outpatient appointments and 35 colonoscopies. Savings represented 15% total yearly biologic costs. The introduction of the IBD biologics nurse-led service resulted in significant gains in care quality and costs. The need for improved follow-up of patients on biologics reflects increased pressures on clinic resources across the country. With continued biologics expansion, the introduction of a biologics nurse has provided invaluable support to patients and the IBD team at Southampton General Hospital.