Inflammatory Bowel Disease Nurses Research Articles

Introduction.

Infusion centers provide a unique opportunity to provide care in a different way to inflammatory bowel disease (IBD) patients. When considering specialist care for IBD patients, there is a range of settings where this may be delivered. Each of these settings differs in the way in which care can be delivered (Table 1). Unlike other clinical settings, infusion centers have a number of specific characteristics that provide an opportunity to improve the totality of IBD care for an individual patient. Unlike many settings, the infusion center offers a significant period of time when patients are focused on their disease, receiving a therapy and able to be engaged in decisions and health promotion. While the primary purpose of the infusion center is to deliver infusions, the opportunity to add value to the patient interaction should not be missed. Core therapies that should be offered in all IBD infusion centers in Australia include biologic drug infusions including vedolizumab and infliximab (both originator and biosimilar). These therapies are highly effective for the induction and maintenance of remission of both Crohn's disease and ulcerative colitis.1, 2 In a treat to target era where IBD physicians and their patients strive for symptomatic and mucosal healing, regular assessment before making treatment decisions is a vital aspect of IBD care.3 Intravenous iron therapy is a simple therapy that can have a significant impact on quality of life. IBD patients may not always tolerate oral iron, and with new, rapid iron infusions such as ferric carboxymaltose able to be given as a 15-min infusion, this improves patient outcomes without the need for prolonged periods in the infusion center.4, 5 Inflammatory bowel disease nurses are key people in the infusion center. Organizing infusions including biologic bureaucracy and paperwork, delivering infusions and making the most of the opportunity of having patients in the IBD care environment are all vital for a functional infusion center.6 Opportunities to deliver extra care through the infusion center include advice on smoking cessation, nutritional assessment, surveillance timetabling (colon, bones, skin, and cervix), psychological comorbidity screening and intervention, and contact with social workers to ensure benefits are used appropriately, and IBD education to improve adherence and knowledge. Many of these areas of care have been described as unpromoted issues by Andrews et al.7 and may be addressed to some extent in the infusion center. However, the unique skill mix of the IBD nurse is central to the effective delivery of such holistic care. There is a range of options for the preparation of infusions including being made up in the infusion center, hospital pharmacy, and by third parties who prepare the drug to order off site. Decisions regarding the way in which the biologic drugs are dependent on characteristics of the infusion center and the environment where it is housed. In conclusion, the infusion center is a unique opportunity to deliver more than just vedolizumab, infliximab, or iron. IBD nurses are key people in adding value to the infusion center experience, ensuring that IBD patients have a holistic IBD experience, promoting wider aspects of health.

OC-063 Introduction of An Inflammatory Bowel Disease Nurse Flexible Sigmoidoscopy Clinic Improves Patient Care by Initiating Earlier Treatment and Saves Clinic Slots

OC-063 Introduction of An Inflammatory Bowel Disease Nurse Flexible Sigmoidoscopy Clinic Improves Patient Care by Initiating Earlier Treatment and Saves Clinic Slots

Mo1843 Introduction of an Inflammatory Bowel Disease Nurse Flexible Sigmoidoscopy Clinic Improves Patient Care by Initiating Earlier Treatment and Saves Clinic Slots

Introduction It is a marker of quality to be able to respond promptly and effectively to a patient with inflammatory bowel disease (IBD) at a time of flare. Many patients who contact the IBD helpline with flare symptoms require a flexible sigmoidoscopy (FS) for accurate assessment. These are usually performed on generic lists where follow up to consider a new treatment plan is arranged resulting in delays in treatment and creating pressure on clinic slots. An experienced IBD nurse prescriber (IBDN) was trained in FS with the aim to endoscopically assess patients and potentially start new treatment the same day. Aim Report the outcomes from the first 2 years of the IBD nurse endoscopist clinic Methods Records were reviewed of all patients attending the IBDN FS clinic. We evaluated the time from referral to FS, diagnoses, demographics and outcomes. Results 410 patients underwwent a FS with the IBDN 195 (47.6%) patients referred for rectal bleeding did not have IBD. 215 (52.4%) had a known diagnosis of IBD, 152 (70.7%) ulcerative colitis and 63 (29.35%) Crohn’s disease. 130 (60.5%) were female, mean age: 48 (range 16 – 88). Referral origin: 76 (35.3%) IBD Helpline. 58 (27%) IBD Consultant clinic. 39 (18.1%) IBDN Clinic. 27 (12.6%) Other medical clinic. 11 (5.1%) inpatient. 4 (1.9%) primary care. FS outcome: 55 (25.6%) commenced azathioprine, 47 (21.9%) started oral prednisolone, 38 (17.7%) commenced 5 ASA therapy, and 19 (8.8%) no changes to their care. In 41 (19.1%) FS was performed to assess need for or response to biological therapy. The 11 (5%) in-patients returned to the ward, 4 (1.9%) diagnosed with acute severe ulcerative colitis. Mean time from referral to test: 7 days, (range 0 – 28). In total 137 clinic slots were saved over 2 years, 76 direct from the helpline avoiding an urgent clinic slot. Following FS, 51 (23.7%) patients were discussed at the next IBD MDT, saving a follow up clinic slot. At the MDT the endoscopy findings were reviewed and discussed and appropriate treatment confirmed with the patient in the IBD telephone clinic. 10 (4.7%) patients were referred direct to the day unit to commence biological therapy following confirmation of active disease at FS as per the treatment plan from the Consultant referral. Conclusion The IBDN FS clinic reduced the time interval between developing symptoms and starting a new treatment plan in patients with IBD. The skilled prescribing IBD nurse endoscopist made changes in 91.2% at the time of the FS. The relatively small number of patients starting 5 ASA therapy suggests this had been optimised prior to FS suggesting patients attending the IBDN FS clinic had moderate to severe IBD. The introduction of the IBDN FS clinic also led to a reduction in demand on outpatient clinic slots. Disclosure of Interest H. Johnson: None Declared, S. Weaver: None Declared, S. McLaughlin Conflict with: Sponsored by Abbvie

Inflammatory bowel disease nurse specialists for patients on biological therapies: a nationwide Italian survey.

BackgroundManagement of inflammatory bowel disease (IBD) patients requires a multidisciplinary approach. Among the working team, the role of IBD nurse is expected to be particularly relevant when managing patients receiving biological therapies. We performed a survey to assess the presence of IBD nurse in centers where patients were receiving biologics.MethodsFor this Italian nationwide survey a specific questionnaire was prepared. IBD nurse was defined as a nurse directly involved in all phases of biological therapy, from pre-therapy screening, administration and monitoring during therapy, to follow up performed by a dedicated helpline, completed a specific training on biological therapy therapy, and observed international guidelines.ResultsA total of 53 Italian IBD centers participated in the survey, and 91 valid questionnaires were collected. Overall, 34 (37.4%) nurses could be classified as IBD specialists. IBD nurses had a significantly higher educational level than other nurses, they were more frequently operating in Central or Southern than in Northern Italy, they were working in an Academic center rather than in a General hospital, and in IBD centers with >25 patients on biological therapy. On the contrary, mean age, gender distribution, years of nursing, and years working in the IBD unit did not significantly differ between IBD and other nurses.ConclusionsOur nationwide survey showed that the presence of an IBD nurse is still lacking in the majority of Italian IBD centers where patients receive biological therapies, suggesting a prompt implementation.

Changing face of care for patients with moderate to severe inflammatory bowel disease: the role of specialist nurses in the governance of anti-TNF prescribing.

Anti-tumour necrosis factor (TNF) therapy is highly effective for inflammatory bowel disease (IBD), but expensive and potentially toxic. Meticulous supervision prior to and during anti-TNF treatment is required to screen and monitor patients for adverse clinical events. In addition, a systematic administrative process is necessary to comply with Australian Medicare requirements and ensure ongoing therapy is uninterrupted. IBD nurses are essential components of multidisciplinary IBD services, but their role in facilitating the safe and timely delivery of anti-TNF drugs is unacknowledged. The aim of the study was to calculate time spent by IBD nurses on anti-TNF drug governance and its indirect cost. Time spent on activities related to anti-TNF governance was retrospectively assessed by questionnaire among IBD nurses employed at Melbourne hospitals. The capacity of IBD clinics at these hospitals was separately evaluated by surveying medical heads of clinics. On average, each Melbourne IBD service handled 150 existing and 40 new anti-TNF referrals in 2013. The average annual time spent by nurses supervising an existing and newly referred anti-TNF patient was 3.5 and 5.25 h respectively, or a minimum of two full working days per week. If clinicians undertook this activity during normal clinic time, the organisational opportunity cost was at least 58%. Anti-TNF therapy governance is an essential quality component of IBD care that is associated with a definite, indirect cost for every patient treated. IBD nurses are best positioned to undertake this role, but an activity-based funding model is urgently required to resource this element of their work.

PTU-334 Setting up a paediatric nurse-led inflammatory bowel disease (ibd) clinic – a tertiary centre experience: Abstract PTU-334 Table 1

Introduction Paediatric Nurse-led IBD patient reviews often occur in an unscheduled manner and without defined resources resulting in inefficient use of nurse time. We describe the process of the first year of a Paediatric Nurse-led IBD clinc. Method The clinic was designed as a quality initiative to dedicate a weekly session for consecutive patient review and facilitate more effective use of resources. Appropriate post graduate study was undertaken by the Paediatric IBD Nurse Specialist prior to the clinic being set up which included history taking, clinical examination, prescribing, requesting tests or further investigation, referral to other services and venepuncture. A nurse-led clinic proforma and patient pathway was designed to facilitate an auditable pathway for patients coming through clinic. Clinical governance and supervision was provided at the IBD multi-disciplinary team (MDT) meeting where each patient was discussed in an MDT forum. Results 344 patient episodes involving 124 patients took place between Feb 2013 – Dec 2014. 68 male. 93 Crohn’s disease (CD), 17 Ulcerative Colitis (UC) and 14 IBD Unclassified (IBDU). Median number of patients seen per clinic was 4. 87% of reviews were routine; 13% were rapid review (booked Conclusion The Paediatric Nurse-led IBD clinic has provided a robust and auditable addition to the IBD patient service. Co-ordination of care requiring cross boundary working with surgeons, physicians, dietitians and other members of the MDT was part of the outcome in over 1/3 of all patient reviews. This demonstrates the pivotal role of the IBD nurse within the MDT. Disclosure of interest None Declared. References Jelness-Jorgenson LP, et al . Is patient reported outcome (PRO) affected by different follow-up regimens in inflammatory bowel disease (IBD)? A one year prospective, longitudinal comparison of nurse-led versus conventional follow-up. J Crohn’s Colitis 2012;6(9):887–894 Whayman K, et al . Developing the role of the clinical nurse specialist in inflammatory bowel disease. Part 2: scope of practice. Gastrointest Nurs. 2012;10(9):22–29

PWE-064 The clinical outcomes of a personalised approach to the management of patients taking thiopurine medication, using metabolite assessments

Introduction A significant number of patients with inflammatory bowel disease (IBD) are treated with thiopurine drugs. Typically patients are commenced on starting doses of Azathioprine (AZA) or 6-Mercaptopurine (6-MP) and these are titrated up to 2.5 mg/kg and 1.25 mg/kg respectively, provided this is tolerated. Measurement of thiopurine metabolites (TPM), 6-Thioguanine nucleotide (6-TGN) and 6-Methylmercaptopurine nucleotide (6-MMPN), has proved useful in improving therapeutic efficacy, minimising unwanted side effects and identifying non-compliance. The aim of this study was to use TPM analysis to help guide the management of patients within our immunomodulator service, at the Luton and Dunstable University Hospital, taking thiopurine drugs. Method The gastroenterology department identified 406 patients with IBD who were taking thiopurine drugs. Letters were sent out on mass to these patients in December 2014 requesting a blood test for TPM before the end of January 2015. The patient’s samples were sent to Birmingham City Hospital for measurement of 6-TGN and 6-MMPN. A thiopurine management algorithm was designed to help clinicians understand these TPMs and direct them on how best to act on these results. Results Of the 406 patients who were sent TPM test requests, 200 attended prior to the end of January. These included 156 patients taking AZA and 44 taking 6-MP. The results for 6-TGN and 6-MMPN determined a change in management for 124 patients (62%), with only 76 patients (38%) classified as having an ‘accurate dose’ of AZA or 6-MP. Non-compliance with thiopurine therapy was evident for 15 patients (7.5%), and a further 5 patients phoned the IBD nurses directly admitting non-compliance. The dose of AZA or 6-MP was increased for 28 patients (14%) and decreased for 71 patients (35.5%). Thiopurine therapy was stopped in 10 patients (5%) due to significantly high levels of 6-TGN or 6-MMPN. A number of patients were classified as being ‘too sensitive’ to the thiopurine drugs with high concentrations of 6-MMPN. Based on the results of 6-TGN and 6-MMPN the drug used by 1 patient was changed from AZA to 6-MP. Conclusion The assessment of thiopurine metabolites directly led to the dose adjustment of AZA and 6-MP in 62% of patients tested. The measurement of 6-TGN and 6-MMPN enables appropriate personalised thiopurine dosing, following a simple thiopurine management algorithm, to optimise their therapy. Non-compliance is easy to identify and patients who preferentially metabolise thiopurine drugs to the hepatotoxic metabolite 6-MMPN had their therapy stopped, enabling initiation of alternative treatment modalities. Further work would be necessary to assess whether this reduces complications in the long term. Disclosure of interest None Declared.

Inflammatory bowel disease in pregnancy: management strategy based on best evidence and European guidelines.

#### Clinical Question What can the primary care practitioner offer men and women with inflammatory bowel disease who are contemplating starting a family? Inflammatory bowel disease (IBD) affects approximately 620 000 people in the UK. IBD (including both Crohn’s disease and ulcerative colitis) is a chronic condition commonly presenting in the teens and twenties.1 Thus it may affect individuals who are anxious about the impact of their medications or their disease on fertility, pregnancy, neonatal outcomes, and breastfeeding. For most patients, their GPs, specialist IBD nurses, or midwives are likely to be the first port of call to address such concerns. Several studies report that patients with IBD believe that their medications are contraindicated in pregnancy or at the very least cause some degree of harm to their unborn child despite evidence to the contrary.2 This article is aimed at primary care practitioners and is a concise summary of various specialist reviews and guidelines on the optimal management of IBD in pregnancy. Several studies have shown that women with IBD are just as likely to become pregnant as those without IBD,3 with two exceptions: women with active Crohn’s disease who may have reduced fertility and women who have had pelvic surgery. The effect of pelvic …

Experiences of complementary and alternative medicine in patients with inflammatory bowel disease - a qualitative study.

BackgroundThe use of Complementary and Alternative Medicine (CAM) in Inflammatory Bowel Disease (IBD) is increasing. Although CAM often improves patients’ well-being, it can also lead to side-effects and interactions with conventional medications. Research on patients with IBD in Sweden who have experiences of CAM is sparse. More studies are needed to enhance awareness of and improve communication about CAM. The aim of this study was to describe experiences of CAM in the healthcare context reported by patients with IBD.MethodsFifteen patients with IBD, eight with Crohn’s disease (CD) and seven with ulcerative colitis (UC), were recruited. Semi-structured qualitative interviews were conducted and qualitative content analysis was performed.ResultsThe analysis revealed the theme Knowledge and communication lead to participation in the area of CAM based on three categories; CAM use, Communication and Self-care. Patients with IBD wanted to be asked about CAM to be able to start a dialogue, as some perceived being treated in a disparaging manner and not taken seriously when raising the subject. Healthcare professionals (HCPs) need to be aware of this in order to meet and understand patient needs. Patients with IBD found it easier to communicate about CAM with the IBD nurses than physicians and dietary changes was one important CAM treatment.ConclusionsThe finding that it was easier to discuss CAM with nurses than physicians emphasizes the important role of the IBD nurse in communication and monitoring patients’ CAM use. Patients wanted to be asked about CAM to be able to start a dialogue, as some perceived not taken seriously when raising the subject. Furthermore, HCPs need to understand that many patients with IBD regard dietary changes as an important part of CAM treatment. Further research in these areas is needed.

PWE-120 What Do Healthcare Professionals Know About Fatigue In Patients With Ibd And How Do They Manage It?

IntroductionFatigue is one of the top complaints in inflammatory bowel disease (IBD) with 40% of patients in remission and 86% in active condition reporting fatigue.1 However patients report that their...

PTH-051 The First Years Outcome Data From Ibd-sshamp; Uk’s First Remote Web-based Self Management Programme For Stable Inflammatory Bowel Disease Patients

IntroductionIn February 2012 the Luton and Dunstable University Hospital, became the first hospital in UK to use a remote (web-based) programme to help manage stable inflammatory bowel disease (IBD) patients....

Early identification of patients with psychological distress: the role of inflammatory bowel disease nurses

Psychological complications in patients with inflammatory bowel disease (IBD) reflect the complexity of coping with a chronic disease. Roughly 30% of patients with IBD have symptoms of psychological distress ( Mikocka-Walus et al, 2007 ). Such distress often goes unidentified, although the effect on disease severity, management, and patients’ use of hospital services can be profound. Even though nurses often feel they do not have the training or skills to identify and deal with patients with psychological problems, yet they find that giving psychological and social support to patients forms a key part of their daily routine. This article provides a simple and straightforward explanation of psychological distress, and provides brief and practical screening tools that can be used in everyday settings to help identify patients in distress.

Health care and patients' education in a European inflammatory bowel disease inception cohort: An ECCO-EpiCom study

Background and AimsThe EpiCom study and inception cohort was initiated in 2010 in 31 centers from 14 Western and 8 Eastern European countries, covering a 10.1million person background population. Our aim was to investigate whether there is a difference between Eastern and Western Europe in health care and education of patients with inflammatory bowel disease (IBD). MethodsA quality of care (QoC) questionnaire was developed in the EpiCom group consisting of 16 questions covering 5 items: time interval between the onset of symptoms and diagnosis, information, education, empathy and access to health care providers. ResultsOf 1,515 patients, 947 (217 east/730 west) answered the QoC questionnaire. Only 23% of all patients had knowledge about IBD before diagnosis. In Eastern Europe, significantly more patients searched out information about IBD themselves (77% vs. 68%, p<0.05), the main source was the Internet (92% vs. 88% p=0.23). In Western Europe, significantly more patients were educated by nurses (19% vs. 1%, p<0.05), while in Eastern Europe, gastroenterologists were easier to contact (80% vs. 68%, p<0.05). ConclusionHealth care differed significantly between Eastern and Western Europe in all items, but satisfaction rates were high in both geographic regions. Because of the low awareness and the rising incidence of IBD, general information should be the focus of patient organizations and medical societies. In Western Europe IBD nurses play a very important role in reducing the burden of patient management.

Quality of care in Crohn's disease.

Crohn's disease (CD) is a chronic and progressive inflammatory disease of the intestine. Overall, healthcare delivery for patients with CD is not optimal at the present time and therefore needs improvement. There are evidences which suggest that there is a variation in the care provided to patients with CD by the inflammatory bowel disease (IBD) experts and community care providers. The delivery of healthcare for patients with CD is often complex and requires coordination between gastroenterologists/IBD specialist, gastrointestinal surgeon, radiologists and IBD nurses. In order to improve the quality of health care for patients with CD, there is need that we focus on large-scale, system-wide changes including creation of IBD comprehensive care units, provision to provide continuous care, efforts to standardize care, and education of the community practitioners.

Inflammatory Bowel Disease Nurses in Canada: An Examination of Canadian Gastroenterology Nurses and Their Role in Inflammatory Bowel Disease Care

Inflammatory bowel disease (IBD) is a chronic relapsing illness primarily including Crohn disease and ulcerative colitis. The disease course often fluctuates over time, and requires maintenance therapy and acute interventions to target disease flares. IBD management requires a multidisciplinary approach, with care from physicians, nurses, dieticians, social workers and psychologists. Because nurses play a pivotal role in managing chronic disease, the aim of the present study was to assess and determine how many nurses work primarily with IBD patients in Canada. A 29-question survey was developed using an Internet-based survey tool (www.surveymonkey.com) to investigate nursing demographics, IBD nursing roles and nursing services provided across Canada. Distribution included the Canadian Society of Gastroenterology Nurses and Associates, the Canadian Association of Gastroenterology, Progress (AbbVie Corporation, USA) and BioAdvance (Janssen Inc, USA) coordinators (via e-mail), and online availability for 15 weeks. Of 275 survey respondents, 98.2% were female nurses, with 68.7% employed in full-time positions. Among them, 42.5% were between 51 and 60 years of age, and 32.4% were between 41 and 50 years of age. In addition, 53.8% were diploma-prepared registered nurses, 35.3% were Baccalaureate-prepared nurses and 4.4% were Masters-prepared nurses. Almost one-half (44% [n=121]) were employed in Ontario, followed by 19.6% (n=54) in Alberta and 9.1% (n=25) in British Columbia. All provinces were represented with the exception of Nunavut and the Northwest Territories. Forty-three per cent (n=119) of nurses identified as working in endoscopy units. Of the 90% who responded as working with IBD patients, only 30% (n=79) had a primary role in IBD care. Among these 79 nurses with a primary role in IBD care, 79.7% worked with the adult population, 10.1% with the pediatric population, and 10.1% worked with both adult and pediatric patients. Their major service was an outpatient setting (67.1%). Survey results showed that only a small percentage of Canadian gastroenterology nurses provide clinical IBD care. Many have multiple roles and responsibilities, and provide a variety of services. The exact depth of care and service is unclear and further study is needed.

P-181 YI Inflammatory Bowel Disease Nurses in Canada

P-181 YI Inflammatory Bowel Disease Nurses in Canada

The effect of an inflammatory bowel disease nurse position on service delivery

Inflammatory bowel disease (IBD) management is increasingly concentrated in units with expertise in the condition leading to substantial improvement in outcomes. Such units often employ nurses with a specialised interest in IBD with enhancements in care reflecting in part the promotion of more efficient use of medical and hospital services by this role. However, the relative contributions of nurse specialist input, and the effect of medical staff with a sub-speciality interest in IBD are unclear although this has major implications for funding. Determining the value of IBD nurses by assessing the direct impact of an IBD nurse on reducing admissions and outpatient attendances has immediate cost benefits, but the long-term sustainability of these savings has not been previously investigated.We therefore assessed the effect of an IBD nurse on patient outcomes in a tertiary hospital IBD Unit where the position has been established for 8years by measuring the number of occasions of service (OOS) and outcomes of all interactions between the nurse and patients in a tertiary hospital IBD Unit over a 12-month period.There were 4920 OOS recorded involving 566 patients. IBD nurse intervention led to avoidance of 27 hospital admissions (representing a saving of 171 occupied bed days), 32 Emergency Department presentations and 163 outpatient reviews. After deducting salary and on-costs related to the IBD nurse there was a net direct saving to the hospital of AUD $136,535.IBD nurse positions provide sustained direct cost reductions to health services via reducing hospital attendances. This is additional to benefits that accrue through better patient knowledge, earlier presentation and increased compliance.

Exploring the role of the inflammatory bowel disease nurse specialist

The number of inflammatory bowel disease (IBD) nurses and the amount of biological therapies being used in IBD has proliferated over the past ten years. Coordinating and managing a biologics service requires highly skilled specialist nursing knowledge and awareness of the support, assessment, administration and monitoring required in supporting the patient through this pathway. This article explores the role of the nurse and clinical issues in managing patients receiving biological therapies.

PTH-110 Are we Doing Enough Vaccinations? – a Dgh Experience of Patients on Biologics

IntroductionImmunomodulators (IM) and biological agents are now used more often and earlier in Inflammatory Bowel Disease (IBD) leading to an increase in opportunistic infections (OI)1. European Crohn’s and Colitis Organization...

PTH-075 You’Ve Gut Mail: A Gastroenterology Email Helpline Is Efficient and Cost-Effective in Resolving Patient Queries and Reducing Non-Elective Inpatient Bed Days

IntroductionElectronic patient-provider communication may be a convenient, cost-effective complement to standard healthcare services1. We piloted a dedicated gastroenterology (GI) email helpline to increase accessibility for patients and medical colleagues seeking...