Review of a paediatric inflammatory bowel disease service during the pandemic and the impact of the CNS role.

BACKGROUND: Inflammatory bowel disease (IBD) is a chronic relapsing and remitting condition. The COVID-19 pandemic has severely disrupted provision of medical care across the world. IBD clinical nurse specialists (CNSs) played a pivotal role in the care of children with IBD during the pandemic national lockdown and in the recovery phase. This article aims to look at the impact of COVID-19 on the paediatric IBD service in one children's hospital and the effect on the IBD CNSs' workload. METHOD: A retrospective review of clinical notes and the service's IBD database from January 2019 to September 2020. RESULTS: There was a significant increase in the number of email and telephone contacts to the IBD CNS team during lockdown. There was an increase in virtual clinics, and an increase in new IBD patients coming to the service, but a reduction in the number of face-to-face consultant clinics. CONCLUSION: COVID-19 has disrupted medical services to children with IBD and led to a reduction in face-to-face activities but has also led to a significant increase in virtual activities. CNSs have taken up a wider role to cover patient care during a time of both medical and nursing redeployment.

Using e-health tools and PROMs to support self-management in patients with inflammatory bowel disease.

BACKGROUND: The use of digital health or e-health is growing. The potential positive impact on IBD care from supported self-management using these tools emerged from a literature review carried out in preparation for a service improvement project. A patient-reported outcomes measure (PROM) with validation across IBD sub-types was already available for use. This internationally recognised tool has potential for use with existing or new e-health systems. AIMS: In order to test the concept of using PROMs to support practice and follow up a small-scale pilot study was designed. The aim of the study was to understand if empowering patients to undertake supported self-management could lead in turn to improved flow through outpatient services. METHODS: An audit was carried out of PROMs looking at quality of life (QoL) as well as disease activity using an electronic platform in real time at the point of patient contact. The disease activity indices used were the Harvey Bradshaw Index and the Simple Clinical Colitis Activity Index, due to the author's familiarity with these tools. RESULTS: Of the 15 participants, 10 reported themselves as 'well' or 'well with questions' all participants reported an acceptance of supported remote self-management using e-health. CONCLUSION: This evaluation led to PROMs being captured on a tablet in the outpatient setting in the pre-pandemic period. Allowing patients to use the PROM as a tool in the outpatient setting has led to longitudinal data being added to the e-health system for each individual. Well patients could be managed remotely, freeing capacity in outpatient clinics.

Depression, anxiety and stress among patients with inflammatory bowel disease during the COVID-19 pandemic: Australian national survey.

BACKGROUND: The global COVID-19 pandemic has impacted on the mental health of individuals, particularly those with chronic illnesses. We aimed to quantify stress, anxiety and depression among individuals with Inflammatory bowel disease (IBD) in Australia during the pandemic. METHODS: An electronic survey was made available to IBD patients Australia-wide from 17 June to 12 July 2020. Respondents with an underlying diagnosis of IBD and over 18 years of age were included. A validated questionnaire (Depression, Anxiety, Stress Score-21, DASS21) was used to assess depression, anxiety and stress. Data on potential predictors of depression, anxiety and stress were collected. RESULTS: 352 participated in the survey across Australia. 60.5% of respondents fulfilled DASS criteria for at least moderate depression, anxiety or stress. 45% reported a pre-existing diagnosis of depression and/or anxiety. Over 2/3 of these respondents reported worsening of their pre-existing depression/anxiety due to the current pandemic. Of those without a pre-existing diagnosis of anxiety or depression, high rates of at least moderate to severe depression (34.9%), anxiety (32.0%) and stress (29.7%) were noted. Younger age (OR 0.96, 95% CI 0.94 to 0.98, p<0.001), lack of access to an IBD nurse (OR 1.81, 95% CI 1.03 to 3.19, p=0.04) and lack of education on reducing infection risk (OR 1.99, 95% CI 1.13 to 3.50, p=0.017) were associated with significant stress, anxiety and/or depression. CONCLUSION: High prevalence of undiagnosed depression, anxiety and stress was identified among respondents. Improved access to IBD nurse support and greater attention to education are modifiable factors that may reduce depression, anxiety and/or stress among patients with IBD during the pandemic.

The effects of inflammatory bowel disease on caregivers: significant burden and loss of productivity.

BACKGROUND: Caregiver burden is the emotional, physical, practical, and/or financial burden associated with taking care of a patient with a chronic condition. Limited literature on caregiver burden in Inflammatory Bowel Diseases (IBD) has accounted for some predictors, but its effect on work productivity (absenteeism and presenteeism) is unknown. METHODS: In a prospective study, patients and their respective caregivers were surveyed from November 2015 until July 2017. Data on demographics, work productivity, quality of life, disease activity, caregiver burden and productivity were collected. The burden on caregivers was assessed and associations between caregiver productivity and caregiver burden were analyzed. Additionally, predictors for caregiver burden were identified. RESULTS: One hundred two IBD patients and their respective caregiver were included. In total, 39% of IBD caregivers experienced burden. Caregivers with burden experienced significantly more absenteeism and presenteeism (65 and 85% respectively). Furthermore, 51% of caregivers felt that they should be doing more for their care recipient and felt they could do a better job at caregiving. Predictors of burden included race/ethnicity, history of fistulas, diagnosis of ulcerative colitis, higher caregiver education, and hours spent caregiving. CONCLUSION: Caregivers with burden had significantly more productivity decrease compared to those without burden. Additionally, the majority of caregivers feel they should be providing more and better care for their recipients. The development of strategies to address caregiver's distress and perceived burden when caring for IBD patients is warranted.

Effects of introduction of an inflammatory bowel disease nurse position on healthcare use.

OBJECTIVE: Inflammatory bowel diseases (IBDs) are chronic relapsing remitting diseases which potentially result in hospitalisation, requiring long-term outpatient follow-up, ideally by a dedicated, multidisciplinary team. In this team, the IBD nurse is the key point of access for education, advice and support.The aim of this study was to assess the impact of introduction of an IBD nurse position on healthcare use and costs in a tertiary IBD centre. METHODS: An IBD nurse was instituted in September 2017 in our multidisciplinary IBD team. We compared differences in healthcare use 1 year before and 1 year after the introduction of an IBD nurse position for all the patients with a confirmed diagnosis of IBD attending the Robert Debre Hospital via two information sources: Programme de Médicalisation des Systèmes d'Information and Centre des Maladies Rares. RESULTS: 252 patients (78.5% of patients with IBD followed up in our centre) were included in the patient education programme. After the introduction of an IBD nurse position, fewer patients were hospitalised for a flare, with less hospital stays: 56 before vs 28 after (p=0.002). An estimated saving of €35 070 was achieved through the decrease of hospitalisations for flare.More patients were also hospitalised for diagnosis: 32 hospitalisations before vs 54 hospitalisations after (p=0.001). All other hospitalisation categories were comparable, and the same reasons for hospitalisation were found before and after. CONCLUSION: This study demonstrates that the IBD nurse position reduces hospital admissions. Instead of the traditional model, the IBD nurse provides accessible advice and allows patients to be outpatients.

Gastrointestinal Symptoms of and Psychosocial Changes in Inflammatory Bowel Disease: A Nursing-Led Cross-Sectional Study of Patients in Clinical Remission.

Background and Objectives: Nursing management in Inflammatory Bowel Disease (IBD) is focused on global patient care. Starting from basic knowledge of diagnostic and therapeutic management, nurses can assess the impact of IBD on patients' quality of life not only at the physical level, but also at the psychological, social, and emotional levels. The aim of this study was to evaluate the impact of gastrointestinal symptoms on psychosocial changes in IBD patients in remission through nursing-led Patient-Reported Outcomes. Materials and Methods: We performed a cross-sectional study of 109 IBD patients in clinical and endoscopic remission. Specialist nurses invited patients to complete questionnaires on gastrointestinal symptoms and quality of life through the Patient-Reported Outcomes Measurement Information System (PROMIS). Results: We found that the gastrointestinal symptoms that the patients reported had a significant impact on the analyzed aspects of health. More specifically, belly pain, diarrhea, and bloating were associated with depressive symptoms (p < 0.001), anxiety (p < 0.001), fatigue (p < 0.001), and sleep disturbances (p < 0.001). Moreover, these symptoms also significantly affected patients' social dimension in terms of satisfaction with participation in social roles (p < 0.001, p < 0.05, and p < 0.001 for belly pain, diarrhea, and bloating, respectively) and physical functions (p < 0.001). The results were virtually the same in a multivariable analysis adjusted by age, gender, body mass index (BMI), and disease duration. Conclusions: Even during remission, gastrointestinal symptoms are the main factors that influence quality of life in IBD patients. This exploratory study highlights the need to adopt validated questionnaires in clinical practice, and demonstrates that PROMIS is a valid, objective, and standardized instrument that can help nursing staff to better define the consequences of the disease in a patient's daily life.

Helping patients live well with a stoma for inflammatory bowel disease: directions for future research.

Lesley Dibley, Reader in Nursing Research and Education, University of Greenwich (L.B.Dibley@greenwich.ac.uk), and Jennie Burch, Head of Gastrointestinal Nurse Education, St Mark's Hospital, outline the need to assess patients' emotional as well as physical needs before stoma surgery for IBD.

[The Research of Present Situation and Influencing Factors of Inflammatory Bowel Disease Nursing Competence in Gastroenterology Department of Grade A of level â ¢ Hospital in Shandong Province].

Objective: The research is to study the present situation and influencing factors of inflammatory bowel disease (IBD) nursing competency in grade A of level Ⅲ hospital in Shandong province. and provided reference for further training and education of IBD nurses. Methods: From October, 2018 to May, 2019, the research is a cross-sectional study including 17 cities, 327 IBD nurses (qualified group n=197, unqualified group n=130) based on the IBD nursing competency questionnaire. The questionnaire is self-designed on the reference of registered nurse core competence scale and the reliability and validity have been tested very well. Results: The IBD nursing competence questionnaire has 8 categories and 68 entries. The content validity index (CVI) is 0.90, while the Cronbach index is 0.992. The median score of IBD nursing competency is 70.59 and each category vary from 55.00 to 84.38. Among them, the critical thinking skills or research ability (55.00) and continuing nursing (58.33) behave not very well. According to the single factor analysis, the hierarchy (P=0.031) and the follow-up numbers of IBD patients (P=0.001) are two significant factors for the IBD nursing competency. In the Logistic multiple factors analysis, the hierarchy (N(1) and N(2)) and the follow-up numbers of IBD patients (21-50 patients) are also important factors. Conclusion: The present situation of IBD nursing competency of Shandong province is acceptable. But there is still a long way to go in the aspect of critical thinking skills, research ability, and continuing nursing. Nurse hierarchy level and follow-up of IBD patients affect nursing competence and we should reinforce the training and education of IBD nurses.

Coping Among Parents of Teens With Inflammatory Bowel Disease.

Parents of teens with inflammatory bowel disease must prepare their children for independent disease self-management. This study characterizes the stressors and coping strategies adopted among parents of teens with inflammatory bowel disease. Teens aged 16-22 years with inflammatory bowel disease who were consecutively seen by a pediatric gastroenterologist prior to transition to adult-centered care and their parents completed sociodemographic data, and two validated questionnaires for coping (Coping Health Inventory for Parents) and stress (Pediatric Inventory for Parents). Sixty-six patient-parent pairs were enrolled in this study-impairment was highest in role function (e.g., trying to attend to the needs of other family members, being unable to go to work, and feeling uncertain about how to maintain consistent discipline). These concerns seemed to be most pronounced among parents of children 18 years and older (χ (df) = 1, p = .04) with Crohn disease (χ (df) = 1, p = .02). The top five listed concerns differed depending on the caregiver's gender. Parents of teens with inflammatory bowel disease are concerned about parenting role function. Parents of teens 18 years and older with Crohn disease reported the highest stress. Caregiver gender differences were noted.

Anti-TNF biosimilars in Crohn's Disease: a patient-centric interdisciplinary approach.

Introduction: The purpose of this review is to highlight the role of biosimilars in early treatment in IBD and introduce ways to facilitate a patient-centric switching process through multidisciplinary approach. Areas covered: We summarize existing scientific literature related to the role of biosimilars in inflammatory bowel disease in terms of early treatment and cost-saving and implementing switching process. Expert opinion: Use of anti-TNF biosimilars in patients has the potential for large drug-acquisition cost-saving, which can be reinvested into early treatment. Managed switched programs for adalimumab can add further benefits in the future.

Nurse-Led Telephone Advice Line for Patients With Inflammatory Bowel Disease: A Cross-Sectional Multicenter Activity Analysis.

Telephone helplines is an effective method for helping patients with chronic diseases, including inflammatory bowel disease (IBD). The objective of this cross-sectional multicenter study was to assess reasons for consultation by patients with IBD to a nurse-led telephone service. The sample included 7,273 IBD patients from 6 public hospitals in Barcelona, Spain. Data collected included calls registered during 50 working days including caller characteristics, reason for consultation, patient's diagnosis, and action recommended. The most common reasons for consultation were suspicion of relapse, doubts regarding medication, drug monitoring, side effects, visit appointment, and request of test results. In 63.7% of cases, telephone calls were solved solely by nurses, and in 35.9% in collaboration with a physician. Patient's questions were resolved via telephone in 89.3%. Findings from this study add support of the nurse's role for providing an effective telephone service for resolution of a wide range of patient queries in IBD. Helplines managed by IBD nurses may be a key element for patient-centered care.

Nurses are Critical in Aiding Patients Transitioning to Biosimilars in Inflammatory Bowel Disease: Education and Communication Strategies.

The increasing prevalence of inflammatory bowel disease and the high costs associated with biologic therapies suggest that biologics with lower costs, but no compromise on efficacy and safety, should be considered when developing a treatment plan for inflammatory bowel disease. Biosimilars offer a more cost-effective alternative, and although the European Medicines Agency has approved the use of biosimilars for many indications, including inflammatory bowel disease, patients may be concerned about the safety and efficacy of these agents. The updated Nurses-European Crohn's and Colitis Organisation statements, published in March 2018, recommend that inflammatory bowel disease nurses facilitate patient choice of biologic or biosimilar therapy. Nurses are pivotal in managing the challenges associated with patients transitioning to biosimilars. However, there is limited information available on how inflammatory bowel disease nurses can communicate the concept of biosimilars to patients and also on how best to support them before and during the switch from originators. This review article will focus on patients' concerns regarding biosimilars and describe considerations for nurses when supporting patients transitioning from originators to biosimilars. Through nurse-led patient education and the use of structured communication strategies, as well as investment in managed switching programmes, patients will become more confident and adherent to their biosimilar therapy, and this may lead to overall reductions in health-care expenditure for inflammatory bowel disease.

Modelling the Inflammatory Bowel Disease Specialist Nurse Workforce Standards by Determination of Optimum Caseloads in the UK.

BACKGROUND AND AIMS: Crohn's disease and ulcerative colitis are the most common forms of inflammatory bowel disease [IBD], affecting 1 in 250 of the population in the UK. It is accepted that access to a specialist nurse service improves patient experience and outcome. National Standards for the Healthcare of People Who Have Inflammatory Bowel Disease [2013] defined the number of nurse specialists required at 1.5 full time equivalent per 250000 population. The aim of this study was to determine if these standards were being met and to publish a new, robust, validated standard optimising the UK nursing workforce model. METHODS: Existing national data and specific workload and service data were collected from 164 IBD specialist nurses who completed a questionnaire designed to collect information on activity and complexity of work both done and undone. RESULTS: Data were received from all of the UK; 36% of respondents were specialist nurses in the field for 3 years or less. A higher caseload than the recommended level was reported by 63% of respondents. Unpaid overtime was regularly carried out by 84% of respondents. The IBD specialist nurse was involved in all areas of the patient pathway. Areas of work left undone were psychological interventions, prescribing medicines and physical assessments. CONCLUSIONS: Compared with other specialties, IBD specialist nurses are less experienced. It is recommended that the current standard be increased to 2.5 full time equivalent specialist nurses per 250000 patients, to mitigate the increasing complexity of the role, care and the 'rookie' factor.

Immunosuppressive/Autoimmune Disorders.

Autoimmune disorders are a category of diseases in which the immune system attacks healthy cells as a result of a dysfunction of the acquired immune system. Clinical presentation and diagnosis are disease specific and often correspond with the degree of inflammation, as well as the systems involved. Treatment varies based on the specific disease, its stage of presentation, and patient symptoms. The primary goal of treatment is to decrease inflammation, minimize symptoms, and lessen the potential for relapse. Graves disease, Hashimoto thyroiditis, rheumatoid arthritis, Crohn disease, ulcerative colitis, systemic lupus erythematosus, and multiple sclerosis are discussed in this article.

Creating a synergy effect: A cluster randomized controlled trial testing the effect of a tailored multimedia intervention on patient outcomes.

OBJECTIVE: Improving adherence is a challenge and multiple barriers are likely to explain non-adherence. These barriers differ per patient and over course of the regimen. Hence, personalized interventions tailored to the specific barriers are needed. In a theoretical and evidence-based Tailored Multimedia Intervention, technology (online preparatory assessment, text messaging) was used as an add-on to a tailored counseling session (learned during a communication skills training), with the expectation of synergistic effects. METHODS: A cluster randomized controlled trial was conducted in six hospitals, eight nurses and 160 chronic patients. Patient satisfaction with communication, beliefs about medication, self-efficacy and medication adherence were assessed at initiation of the treatment and after six months. RESULTS: Intervention effects were found for patient satisfaction with nurses' affective communication and self-efficacy at the initiation of treatment. The effect on self-efficacy remained after six months. CONCLUSION: By combining tailored counseling with technology, this intervention resulted in positive changes in important prerequisites of medication adherence. PRACTICAL IMPLICATIONS: Technology can contribute significantly to health care providers' ability to tailor information to the patients' needs.

The impacts of an inflammatory bowel disease nurse specialist on the quality of care and costs in Finland.

INTRODUCTION: A specialized inflammatory bowel disease (IBD) nurse is considered a valuable and cost-effective member of a multidisciplinary team, not all clinics responsible for IBD care employ such nurses. We evaluated IBD nurse resources, quality of care and cost effects on IBD patients care in a nationwide study in Finland. METHODS: A healthcare professional electronic survey was conducted in order to assess the impact of an IBD nurse on the quality of care. To study the cost effects, we obtained nationwide comprehensive data covering years between 2008 and 2016 from major administrative healthcare districts of Finland. Patients with a diagnosis of IBD (ICD-code K50 or K51) were identified from the data and their personal contacts and hospitalization were analyzed. The results were compared between healthcare districts with an IBD nurse and healthcare districts without an IBD nurse. RESULTS: Forty-nine physicians and 88 nurses responded to the survey. Of the physicians, 92% reported that an established IBD nurse had released physician's resources. The most important IBD nurse contributions listed were patient support and follow-up (79-81% of the respondents). Healthcare district, which had an established IBD nurse, produced more patient contacts. A larger proportion of the contacts was managed by the IBD nurse. Clinics with an IBD nurse reported less patient hospitalization (4-9% vs 11-19%, p < .001). Estimated annual cost savings while employing an IBD nurse may be significant. CONCLUSION: The introduction of an IBD nurse led to better quality of care and potentially significant cost savings by reducing hospitalization rates and reallocating physician's time resources.

Symptom clusters in adults with inflammatory bowel disease.

Symptoms (pain, fatigue, sleep disturbance, depression, and anxiety) in inflammatory bowel disease (IBD) are associated with reduced quality of life. Understanding how IBD symptoms cluster and the clinical and demographic factors associated with symptom clusters will enable focused development of symptom management interventions. The study purposes were to (i) identify symptom cluster membership among adults with IBD and (ii) examine associations between demographic (age, gender, race/ethnicity, and education) and clinical factors (smoking status, time since diagnosis, medication type, IBD type, disease activity), and membership in specific symptom cluster groups. We conducted a retrospective study of data from the Crohn's and Colitis Foundation of America's (CCFA) Partners Cohort and used Patient Reported Outcome Measurement Information System (PROMIS) measures to measure pain interference, fatigue, sleep disturbance, anxiety, and depression. The sample included 5,296 participants with IBD (mean age 44, 72% female). In latent class analysis (LCA), four groups of participants were identified based on symptoms: "low symptom burden" (26% of sample), "high symptom burden" (38%), "physical symptoms" (22%), and "psychological symptoms" (14%). In multinomial regression, female gender, smoking, corticosteroids, Crohn's disease, and active disease state were associated with membership in the high symptom burden group. Additional research is needed to test interventions that may be effective at reducing symptom burden for individuals with IBD.

Establishing a nurse-led pelvic floor and functional bowel service.

Jane Turner, Colorectal Nurse Specialist, Cardiff and Vale University Health Board, was awarded a travel scholarship by the Florence Nightingale Foundation. She used it to find out about the running of nurse-led pelvic floor and functional bowel services around the UK.