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OBJECTIVE AND AIMS: Fatigue is common in inflammatory bowel disease (IBD). In a RCT we demonstrated reductions in fatigue after 4 weeks' treatment with high-dose oral thiamine. We aimed to investigate whether 300 mg thiamine daily for 12 weeks could maintain the achieved levels of fatigue in patients with IBD after a 4-week intervention with high-dose thiamine; and evaluate the effect of a 6-month period where patients were free to take oral thiamine.METHODS: A randomised, open-label, controlled trial, performed as a long-term extension (LTE) study of an initial randomised, high-dose thiamine trial. Patients were allocated 1:1 to 300 mg oral thiamine or no thiamine for 12 weeks. Subsequently, the patients were allowed to self-treat with over-the-counter (OTC) oral thiamine 6-month.RESULTS: Regardless of allocation in the LTE study fatigue severity increased in the study period. No significant effect of 300 mg oral thiamine were found, when stratifying for initial allocation in the high-dose study or fatigue level at entry in the LTE study. Patients who took OTC thiamine had lower level of fatigue 6 month later (7.8; 95% CI: 5.5-10.1) when compared to the remains (11.0; 95% CI: 9.2-12.8) (p = .02). After the 6-months follow-up without restrictions, 66% of patients had reached normal fatigue levels.CONCLUSIONS: We found no beneficial effect on fatigue from thiamine taken in doses of 300 mg per day for 12 weeks following high-dose treatment. After a 6-months follow-up without restrictions 66% had reached a normal level of fatigue.CLINICAL TRIAL REGISTRATION: The trial was registered at ClinicalTrials.gov under study identifier NCT03634735.

The impact of a stoma on long-term health-related quality of life in people living with ileostomies is not clear.This study aimed to describe important patient-reported outcomes and health-related quality of life in people with ileostomies.This is a population-based, cross-sectional study. Patients were invited to answer questionnaires estimating stoma-specific and generic health-related quality of life (EQ-5D-5L and the Major Depression Inventory). Danish norms were retrieved from reference literature.This study was conducted at the major stoma clinic at Aarhus University Hospital, Denmark.We invited all patients with ileostomies who were in contact with the clinic between 2012 and 2017.The primary outcomes measured were patient-reported outcomes specific to people with ileostomies.Of 621 identified patients (50% women), 412 (67%) responded to the survey. Among the responders, 178 (43%) reported that they still had an ileostomy at the time of the survey and were included in the analysis. Fatigue was frequent; 68% (95% CI 60%-75%) reported being tired and 26% (95% CI 20%-33%) answered that they were "always tired," whereas 43% (95% CI 36%-51%) lacked energy, 62% (95% CI 54%-69%) reported poor sleep, and 59% (95% CI 52%-66%) needed to rest during the day. Fifty-six percent (95% CI 48%-63%) needed to know the immediate location of the nearest toilet, and 58% (95% CI 51%-66%) felt sexually unattractive because of their ileostomy. Health-related quality of life measured with generic questions indicated 0.124 points lower health-related quality of life than the Danish norm ( p0.001), and 18% (95% CI 13%-25%) scored above the threshold for depression, which is 2.6 times higher than the background population (7%, 95% CI 6%-9%; p0.001).This study was limited by potential selection bias, and all participants did not answer all items.Fatigue and low health-related quality of life is common in people living with ileostomies. Addressing fatigue and stoma-specific challenges in patients with an ileostomy is warranted. See Video Abstract at http://links.lww.com/DCR/B803 .ANTECEDENTES:El impacto de un estoma en la calidad de vida relacionada con la salud a largo plazo en personas que viven con ileostomías no está claro.OBJETIVO:Describir desenlaces importantes informados por pacientes y la calidad de vida relacionada con la salud en personas con ileostomías.DISEÑO:Estudio transversal poblacional. Se invitó a los pacientes a responder cuestionarios que estiman la calidad de vida relacionada con la salud general y específica del estoma (EQ-5D-5L y el Inventario de depresión mayor). Las normas danesas se recopilaron de la literatura de referencia.AJUSTES:El estudio se llevó a cabo en la clínica principal de estomas del Hospital Universitario de Aarhus, Dinamarca.PACIENTES:Invitamos a todos los pacientes con ileostomías que estuvieron en contacto con la clínica entre 2012 y 2017.PRINCIPALES MEDIDAS DE RESULTADO:Resultados informados por el paciente específicos para personas con ileostomías.RESULTADOS:De 621 pacientes identificados (50% mujeres), 412 (66%) respondieron la encuesta. Entre los que respondieron, 178 (43%) informaron que todavía tenían una ileostomía en el momento de la encuesta y fueron incluidos en el análisis. La fatiga era frecuente; el 68% (intervalo de confianza del 95%: 60-75%) informó estar cansado y el 26% (20-33%) respondió "siempre cansado", mientras que el 43% (36-51%) carecía de energía, el 62% (54-69%)) refirieron dormir mal y el 59% (52-6%) necesitaba descansar durante el día. El cincuenta y seis por ciento (48-63%) necesitaba saber la ubicación inmediata del baño más cercano y el 58% (51-66%) se sentía sexualmente poco atractivo debido a su ileostomía. La calidad de vida relacionada con la salud medida con preguntas genéricas indicó una calidad de vida relacionada con la salud 0,124 puntos más baja que la norma danesa ( p0,001), y el 18% (13-25%) puntuó con depresión, que es 2.6 veces más alta que la población de base (7%, 6-9%, p0,001).LIMITACIONES:Posible sesgo de selección, y no todos los participantes respondieron a todos los ítems.CONCLUSIONES:La fatiga y la baja calidad de vida relacionada con la salud es común en las personas que viven con ileostomías. Se justifica abordar la fatiga y los desafíos específicos del estoma en pacientes con una ileostomía. Consulte Video Resumen en http://links.lww.com/DCR/B803 . (Traducción-Juan Carlos Reyes ).

Think of which expression you use: ‘cirrhotic patient’ or ‘a patient with cirrhosis’. Nurses will pick ‘a patient with cirrhosis’ because their training enables an intuitive understanding of the patient as a person — more emphasis on the person is needed.

Palle Bager explores the findings of an international review paper into complications arising from liver cirrhosis, with a focus on the role of specialist nursing care

BACKGROUND AND AIM: Malnutrition and muscle mass loss are complications in liver cirrhosis and alcoholic hepatitis (AH). Hospitalised patients who do not meet nutritional requirements are recommended to be fed enterally or parenterally, but no guidelines recommend a specific type of tube. This study aimed to compare the efficacy of jejunal versus gastric feeding.METHOD: 40 inpatients with liver cirrhosis and/or AH, a nutritional risk score more than 2 and a reduced daily energy intake were included. Half were randomised to nasogastric (NG) and half to nasojejunal (NJ) tube feeding. All received Peptamen AF as a supplement to oral intake. Participants were followed up until discharge or death.FINDINGS: The study evaluated the data for 33 patients for 7 days after tube insertion. Mean daily energy intake for 7 days was 6509 kJ (NG) vs 6605kJ (NJ) (P=0.90). Tubes accidently removed by patients: once (n=16); twice (n=9); three times (n=6), with no differences between NG and NJ.CONCLUSION: There were no significant differences in total nutritional intake between early NG feeding and early NJ feeding 7 days after tube insertion. The number of tube replacements was similar in both groups. Choice of tubes for patients with severe liver disease will depend on individual patient characteristics and needs and local facilities.

Background: Patients with inflammatory bowel disease (IBD) are more and more often treated with biological therapy, primarily to induce remission and secondarily to maintain remission in IBD. Studies have shown how the patients' health-related quality of life (HRQoL) improves during treatment. However, worry and concern have not improved as rapidly as other HRQoL parameters. Aim: This study aimed to explore the aspects of worry in a population of patients treated with biological therapy. Methods: Patients were asked to score HRQoL on two scales and subsequently asked to elaborate on their worry issues. Findings: The study revealed that worries were independent of disease activity. The main worry issues were lack of energy, emotional impact, sleep, pain, work and body image. Emotional impact and body image were more burdensome for women than men. When elaborating on emotional impact, it was revealed that worries about the future and the burden of IBD were common.

OBJECTIVE: Health literacy (HL) is a concept covering a range of cognitive and social skills that comprises aspects necessary for patients to navigate in the healthcare system. Our study aimed to investigate HL in patients with liver cirrhosis and determine factors associated with low HL.METHODS: Data were collected among outpatients with cirrhosis (n = 108), using three dimensions from the Health Literacy Questionnaire. The selected dimensions were: 'Social support for health' (Social support scale), 'Ability to actively engage with healthcare providers' (Engagement scale), and 'Understand health information well enough to know what to do' (Information scale). Unpaired t-test was used to investigate differences on the HLQ scale scores. The effect sizes (ES) were calculated between groups using Cohen's d.RESULTS: A total of 105 patients completed the questionnaire. Mean age of respondents was 60.6 years (45.5% females). A majority had alcoholic liver cirrhosis (64.8%) and 36.2% were living alone. Males had a low level of Social support HL (p CONCLUSIONS: Male outpatients with liver cirrhosis were found to have low levels of HL, so were patients with low education. In order to effectively communicate and support patients to self-manage their disease, healthcare providers can benefit from including a focus on HL in planning and delivering health care to patients with liver cirrhosis.

OBJECTIVE: Advice lines for patients with inflammatory bowel diseases (IBD) have been introduced internationally. However, only a few publications have described the advice line service and evaluated the efficiency of it with many results presented as conference posters. A systematic synthesis of evidence is needed and the aim of this article was to systematically review the evidence of IBD advice lines.MATERIALS AND METHODS: A broad systematic literature search was performed to identify relevant studies addressing the effect of advice lines. The process of selection of the retrieved studies was undertaken in two phases. In phase one, all abstracts were review by two independent reviewers. In phase two, the full text of all included studies were independently reviewed by two reviewers. The included studies underwent quality assessment and data synthesis.RESULTS: Ten published studies and 10 congress abstracts were included in the review. The studies were heterogeneous both in scientific quality and in the focus of the study. No rigorous evidence was found to support that advice lines improve disease activity in IBD and correspondingly no studies reported worsening in disease activity. Advice lines were found to be health economically beneficial with clear indications of the positive impact of advice lines from the patient perspective.CONCLUSION: The levels of evidence of the effect of advice lines in IBD are low. However, the use of advice lines was found to be safe, and cost-effective. Where investigated, patients with IBD overwhelmingly welcome an advice line with high levels of patient satisfaction reported.

This article provides an overview of the metabolic brain dysfunction hepatic encephalopathy (HE). HE is caused by severe liver cirrhosis and patients will often be treated in a liver unit, but patients with symptoms of HE may require nursing care anywhere in the healthcare system. Therefore it is beneficial for all nurses to have a basic knowledge of HE and this article explains the symptoms and treatment. Possible differential diagnoses are presented, as well as factors that can trigger episodes of HE. Both patients' and relatives' experiences are examined. Finally, the nurse's role in caring for patients with HE is described, along with the dilemmas and challenges involved.

Adherence to treatment can be challenging, especially in chronic diseases. In inflammatory bowel disease (IBD), maintenance therapy is common to prevent a disease relapse, and adherence becomes even more of a challenge during remission. Furthermore, practical problems with taking topical treatment can increase the likelihood of non-adherence. In IBD, the definition adherence can be expanded beyond taking medication to factors like leaving blood or stool samples, keeping appointments or adjusting behaviour regarding smoking or diet. This review provides a taxonomy of different types of non-adherence and indicates how these types call for different interventions. Furthermore, the article describes how IBD nurses can open up conversations with patients that will hopefully lead to improvements in their adherence.

OBJECTIVE: To provide normative data for the Low Anterior Resection Syndrome (LARS) score.BACKGROUND: The LARS score is a validated and frequently used tool measuring bowel dysfunction after sphincter sparing surgery for rectal cancer. The interpretation of LARS score results has previously been limited by the lack of normative data.METHODS: An age and sex-stratified random sample of 3440 citizens from the general population was drawn from the Danish civil registration system (age range 20-89 years, 50% females). A brief questionnaire including the LARS score and health-related items were distributed electronically or by post.RESULTS: A total of 1875 (54.5%) responded, 54.0% were females. In the age group 50 to 79 years, relevant for most rectal cancer studies, the response rate was 70.5% (n = 807). In this specific age group, 18.8% of the females and 9.6% of the males had a LARS score ≥30, corresponding to the LARS score category "major LARS" (P = 0.001), and the median (interquartile range) LARS score was 16 (7-26) and 11 (4-22), respectively (P < 0.001). Responders with physical disease had a statistically significant higher risk of a LARS score ≥30, compared with responders without any physical disease (odds ratio 2.2, 95% confidence interval 1.6-2.9, P < 0.001).CONCLUSIONS: A LARS score ≥30 (major LARS) is common in the general population, especially in the age group 50 to 79 years. Normative data for the LARS score are now available and can be taken into account when interpreting LARS score results in scientific studies of bowel function after rectal cancer treatment.

Patients who have liver cirrhosis, which is a chronic and complex disease, have to understand a lot of information, including the nature of the disease and the structure of the healthcare system. It is important for nurses to be able to tailor care to this group of patients. It can therefore be useful to know the level of patients' health literacy (HL). In general, HL is measured through self-administered questionnaires. This study investigated the face validity of three HL questionnaires with a total of 108 outpatients with liver cirrhosis. The patients were allocated to one of 6 groups, within which the questionnaires administered in a different order; the allocation to each groups was random. One-third of patients needed help to complete the questionnaires: these were mostly individuals with alcohol-related liver cirrhosis, low levels of education, who were mostly male. The order of questionnaires was found to be unimportant, as the results were similar across the 6 groups. Measuring HL in patients with liver cirrhosis is a challenge—and the findings of this study indicate that exposing patients to any questionnaire could be used as a rough screening tool.

Background Patients with Inflammatory Bowel Disease (IBD) often experience the problematic and burdensome symptom of fatigue, both during periods of relapse and remission. The optimal management of fatigue in IBD is uncertain, however there is evidence suggesting that physical activity is likely to be a beneficial way of managing the symptom. The aim of this study is to explore the relationship between fatigue and objective measurements of both physical activity metrics and varying intensities of physical activity for individuals with IBD. Methods A multi-centred, European, cross-sectional, correlational study was employed. A consecutive sample of 187 patients with Crohn’s disease (59%) or ulcerative colitis (41%) were recruited from six IBD centres in the Republic of Ireland (42%), United Kingdom (40%) and Denmark (18%). Fatigue was measured using the IBD-Fatigue (IBD-F) scale, including both the level of fatigue (IBD-F, Section 1) and impact of fatigue (IBD-F, Section 2). Physical activity was objectively measured using scientifically validated triaxial accelerometers (ActiGraph wGT3X-BT) during seven consecutive days. Results A moderate level of fatigue (IBD-F Section 1 Md (IQR) = 10 (6 – 13)), predominantly intermittent in nature (72%) was reported by participants (57.4% female; 59% Crohn’s disease; 43% active disease). Participants self-reported sleeping an average of 8.7 hours over the seven nights. During the week, the intensity of activity was predominantly sedentary (Md 5 days, 22 hours, 20 minutes) or light (Md 19 hours, 35 minutes). The median moderate-to-vigorous intensity of physical activity per day was 32.2 minutes and step count over the week was 47052 steps. There was no evidence of a unique linear or non-linear relationship between each of the objective measurements of physical activity with IBD-related fatigue. This lack of evidence extended separately to patients in remission and to patients with active disease. These findings are in the context of a statistically significant moderately-strong relationship between disease activity (measured using both HBI and SCCAI) and level of fatigue for both patients of Crohn’s disease (rs = .327, p = .001, n = 96) and ulcerative colitis (rs = .353, p = .003, n = 71). Conclusion This large multi-centred study shows no association between objective measurements of physical activity and IBD-fatigue. These findings suggest that engaging or not engaging in physical activity has no differential impact on self-assessment of fatigue.

OBJECTIVE: Inflammatory bowel diseases (IBDs) have a considerable impact on the health-related quality of life (HRQoL) of patients. We aimed to investigate the effect of biological therapy on HRQoL in IBD patients followed in an out-patient clinical setting and to compare the HRQoL scores to that of IBD patients without disease activity.MATERIALS: Observational and retrospective study in patients treated with biologics. A Short Health Scale (SHS) questionnaire on HRQoL consisting of four items (bowel symptoms, interference in daily life, worry, and general well-being) was completed and registered in each patient's medical journal. Data on HRQoL was collected at the beginning of treatment and every 3 months thereafter. The biologically treated group was compared with a control group of IBD patients without disease activity.RESULTS: We identified 114 patients who began a new round of biological treatment. These were either naïve to biologics or had a break in treatment for more 3 months. After 3 months of therapy, significant improvements in HRQoL compared to baseline were observed for every item on the SHS (p value CONCLUSION: Treatment with biological therapy leads to a statistically and clinically significant improvement in HRQoL in all parameters. After 6 months of treatment, bowel symptoms and interference in daily life were similar to patients without disease activity.

OBJECTIVE: Fatigue is a common concern among patients with inflammatory bowel disease (IBD). The Inflammatory Bowel Disease Fatigue (IBD-F) scale was developed in 2014 together with patients with IBD. The IBD-F comprises five questions about the frequency and severity of fatigue followed by 30 questions about the experience and impact of fatigue. All questions have generic character. Normative values are needed if the IBD-F scale is to be used extensively. This study aims to generate normative values for the IBD-F scale in a Danish background population.MATERIALS AND METHODS: An age- and gender-stratified random sample of 3460 Danes was drawn from the total population. The IBD-F and a few socio-demographic questions were administered electronically.RESULTS: Of the 3460 drawn individuals, 2952 citizens with electronic access were invited to participate, 1925 (65.2%) citizens accepted the invitation, and 1761 (59.7%) completed the IBD-F questionnaire. Overall, women had more fatigue than men (the frequency and severity, 7.2 vs. 6.6; p 0.85.CONCLUSIONS: The IBD-F scale can be used in the background population and this study provides normative data for fatigue. Fatigue was higher for women and specific age groups. Several socio-demographic and morbidity variables were associated with fatigue.

This clinical review aims to describe the complexity of care planning for patients with end-stage liver disease (ESLD). There is no definition of ESLD and no guidelines for the supportive care of patients. A few screening tools can be used to assess ESLD and the prognosis. Complications include hepatic encephalopathy, ascites, malnutrition, gastrointestinal bleeding, pruritus, infections and muscle cramps. Several complications to liver disease might be treated in a different way when the patients are at this stage. Focus shifts from symptom control to palliative care and optimising the patients' quality of life. When limiting alcohol intake, clinicians and patients need to balance its impacts on quality of life. This review addresses how these changes can be carried out by the liver nurses as a part of the liver multidisciplinary team (MDT).

Anaemia and iron deficiency (ID) are common complications in inflammatory bowel disease (IBD). In patients undergoing iron therapy, intravenous iron supplementation is recommended in preference to oral therapy. This study evaluated routine practice in the management of IBD-associated anaemia and ID to verify implementation of international treatment guidelines.Gastroenterologists from nine European countries (n=344) were surveyed about their last five IBD patients treated for anaemia (n=1404). Collected information included tests performed at anaemia diagnosis, haemoglobin (Hb) levels and iron status parameters, the anaemia treatment given and, if applicable, the iron administration route.Selection of diagnostic tests and treatment for IBD-associated anaemia varied considerably across Europe. Anaemia and iron status were mainly assessed by Hb (88%) and serum ferritin (75%). Transferrin saturation was only tested in 25% of patients. At diagnosis of anaemia, 56% presented with at least moderate anaemia (Hb10 g/dl) and 15% with severe anaemia (Hb8 g/dl). ID (ferritin30 ng/ml) was detected in 76%. Almost all patients (92%) received iron supplementation; however, only 28% received intravenous iron and 67% oral iron. Management practice was similar in 2009 and 2011.In clinical practice, most IBD patients received oral iron even though this administration route may aggravate the disease, and despite international guidelines recommending intravenous administration as the preferred route. The high frequency of ID suggests insufficient monitoring of iron status in IBD patients. There is a need to increase awareness and implementation of international guidelines on iron supplementation in patients with IBD.

With the increasing number of patients with inflammatory bowel disease (IBD) and consequently limited available resources, the organization and quality of care that patients receive require ongoing attention. Many initiatives have been introduced, but few have begun by asking the patients about their support for planned changes to their care. The aim of this project was to investigate the willingness and concerns of outpatients with IBD to change regular outpatient visits to annual telephone calls from an IBD nurse. We also wanted to illuminate any potential barriers to introducing self-management (SM) to this population. One way to accomplish this is by introducing SM that replaces routine appointments in the outpatient clinic with annual blood sample collection, followed by a telephone call from an IBD nurse and direct acute access to the clinic, if needed. We consecutively included 150 IBD patients who attended the outpatient clinic at Aarhus University Hospital, Aarhus C, Denmark. They were asked to which extent they were willing to shift to the SM approach from their current routine. The survey showed that 87% of the patients agreed to adopt the SM approach. Many patients commented that it was an excellent and timesaving idea. Those who had doubts were mainly older, retired patients. Their concerns were mainly due to hearing loss, disease activity, medical treatment monitoring, and worries about the competence of the IBD nurse.

OBJECTIVE: In inflammatory bowel disease (IBD), adherence to both medical treatment and other aspects of care has a substantial impact on the course of the disease. Most studies of medical adherence have reported that 30-45% of patients with IBD were non-adherent. Our study aimed to investigate the different aspects of adherence and to identify predictors of non-adherence, including the quality of care, for outpatients with IBD.MATERIALS AND METHODS: An anonymous electronic questionnaire was used to investigate different aspects of adherence, the quality of care, patient involvement and shared decision making among 377 IBD outpatients.RESULTS: Three hundred (80%) filled in the questionnaire. The overall adherence rate was 93%. Young age (CONCLUSIONS: Predictors for non-adherence were young age and smoking. High adherence rates could be explained by a high patient satisfaction and a high degree of shared decision making.

Background:\ud Robust research evidence should inform clinical practice of inflammatory bowel disease (IBD) specialist nurses, but such research is currently very limited. With no current agreement on research priorities for IBD nursing, this survey aimed to establish topics to guide future IBD nursing research across Europe.\ud \ud Method:\ud An online modified Delphi survey with nurse and allied health professional members of the Nurses European Crohn’s and Colitis Organisation (n=303) was conducted. In round one, participants proposed topics for research. In round two, research topics were rated on a 1-9 scale and subsequently synthesised to create composite research questions. In round, three participants selected their top five research questions, rating these on a 1-5 scale.\ud \ud Results:\ud Eighty-eight, 90, and 58 non-medical professionals, predominantly nurses, responded to rounds one, two and three respectively, representing 13 European countries. In round one, 173 potential research topics were suggested. In rounds two and three, responders voted for and prioritised 125 and 44 questions respectively. Round three votes were weighted (rank of 1 = score of 5), reflecting rank order. The top five research priorities were: interventions to improve self-management of IBD; interventions for symptoms of frequency, urgency and incontinence; the role of the IBD nurse in improving patient outcomes and quality of life; interventions to improve IBD fatigue; and care pathways to optimise clinical outcomes and patient satisfaction.\ud \ud Conclusion:\ud The prioritised list of topics gives clear direction for future IBD nursing research. Conducting this research has potential to improve clinical practice and patient-reported outcomes.

This study aimed to explore how patients with liver cirrhosis experienced overt hepatic encephalopathy (HE), how patients' close relatives perceived having a relative with HE and how nurses described the challenges related to caring for patients with HE. The study was based on semi-structured interviews with eight patients, eight relatives and six nurses. The collected data were analysed according to Malterud's systematic text condensation. The analysis process identified four themes (loss, anxiety, dependence and isolation) for patients, five themes (powerlessness, taking control, support, on guard and information) for relatives and four themes (unpredictable nature, becoming familiar with patients, protecting oneself and doing right) for nurses. The findings reveal new perspectives on HE and can be said to provide an important contribution to gaining a deeper understanding of the experience and impact of HE.

Background and aim Anemia is common in IBD patients and intravenous iron treatment is preferred. The drug cost of intravenous iron carboxymaltose is approximately twice the cost of intravenous iron sucrose. The aim was to evaluate the health care costs of intravenous iron sucrose (Venofer®, Vifor) and intravenous iron carboxymaltose (Ferinject®, Vifor) treatment to IBD patients in an outpatient setting. Methods Based on data from111 IBD patients treated with intravenous iron in an outpatient setting health care costs were evaluated by means of Budget Impact Analysis, Cost Effective Analysis and Cost Benefit Analysis. Results The Cost Effective Analysis showed that iron carboxymaltose was more cost-effective than iron sucrose, due to fewer outpatient setting visits. Even a sensitivity analysis using a reduced patient income (50%) in the Cost Effective Analysis showed iron carboxymaltose to be the most cost effective treatment. The Budget Impact Analysis from a hospital perspective showed that iron carboxymaltose was more expensive than iron sucrose regardless of the dose given. In contrast the Cost Benefit Analysis showed that the average patients' ‘willingness to pay’ for a total of iron dose of 1400 mg was €233 in order to reduce the number of infusions from 7 to 2 by using iron carboxymaltose rather than iron sucrose. Conclusion Both the Cost Effective Analysis and the Cost Benefit Analysis showed clearly that iron carboxymaltose is a more cost effective way of giving intravenous iron than iron sucrose in IBD patients. Only the Budget Impact Analysis showed that intravenous iron sucrose was the cheapest choice if only direct cost was included in the analysis.

Patients admitted to general hospital with harmful use of alcohol are often motivated for alcohol abstinence post discharge, but they are often readmitted to hospital, by which time they have likely started drinking again. The purpose of this study was primarily to evaluate the effect of Brief Intervention before and after discharge on the frequency of alcohol abstinence 2 months after discharge, and secondarily to identify predictors for abstinence. A randomized, controlled trial with consecutive recruitment of patients was conducted at Aarhus University Hospital, Denmark. A total of 50 patients admitted due to alcohol-related disease and active harmful use of alcohol, were included in the study and randomly placed in two groups: a “Brief Intervention” group, which received Motivational Interviewing for 2 months, and a control group which was discharged according to standard practice. Patients in the Brief Intervention group were more likely to remain alcohol abstinent after 2 months. None of the patient...

Inflammatory bowel diseases (IBD) are characterised by periods of disease activity and period with disease in remission. In Denmark all patients are seen in hospital settings. The aim of this study was to introduce a nurse-led phone service for stable patients replacing annual visits. The study originated from an outpatient cohort of 1,600 patients with IBD. A research protocol was determined before the intervention was launched, which included surveys among the patients before the intervention, after the intervention, collection of longitudinal data in a three year period, and a clinical audit. Budget impact analysis (BIA) and cost-effectiveness analysis (CEA) were done. Furthermore, the staff evaluated the process. Almost 30% (n = 474) of the total cohort was enrolled in the service. Eighty-seven per cent of the patients welcomed the phone service beforehand. After implementation, 94% of the patients included were pleased with the service. The programme has shortened the waiting time for most other services, but no improvement in the workload was observed. The BIA showed limited savings. The CEA showed an annual saving of 100€ per patient when using the annual phone service over routine visits. In conclusion, changing the method of contact from routine annual visits to annual phone calls from a nurse was feasible and well accepted for stable patients with IBD. The benefits of the service were most marked for the patients. Problem Patients with inflammatory bowel diseases (IBD) are often seen by a doctor on a regular basis in the hospitals outpatient clinics regardless of disease activity or not. The follow-up and treatment of patients with IBD is continuous to postpone relapse and prolong the period of disease remission. The majority of IBD patients are diagnosed while in their twenties. Therefore, many patients are quite young and are studying or are in the labour market. Appointments in the outpatient clinic can therefore become costly for the patients and might as well be replaced by telephone calls if the disease is in-remission.

Objective. Nonvariceal acute upper gastrointestinal bleeding (AUGIB) is often associated with significant blood loss and anemia. Both the bleeding episode itself and the subsequent anemia are likely to significantly impact a patient's health-related quality of life (HRQoL). Treating the anemia is essential to increase the hemoglobin levels. The HRQoL impact has not been investigated. This longitudinal study aimed to determine the relationship between anemia, HRQoL, and fatigue in patients after nonvariceal AUGIB. Materials and methods. A total of 97 patients (51 males and 46 females; mean age 70 years) were followed in a longitudinal study with a 6-month follow-up. All patients had AUGIB and were anemic at inclusion. Anemia, HRQoL (EQ-5D-3L), and fatigue (using the Multidimensional Fatigue Inventory) were assessed at baseline, and at 1, 3, and 6 months. The patients were initially included in an iron supplementation study. Results. The patients' HRQoL increased and their fatigue levels decreased from baseline to month 3 and month 6. Approximately half of the patients had full health at month 3; similar results were observed in the general population. Three and six months after the bleeding episodes, neither the HRQoL nor fatigue was affected by the anemia. Conclusion. This study did not uncover relationships between anemia and HRQoL or anemia and fatigue after nonvariceal AUGIB.

Finally, we agree that the causal role of IFNL4 geno-types for viral clearance is conflicting, and further studiesneed to be performed to elucidate the molecular mecha-nistic relationship.ACKNOWLEDGEMENTThe authors’ declarations of personal and financial inter-ests are unchanged from those in the original article.

Background and aims: The difference in nursing roles when caring for patients with inflammatory bowel disease varies across Europe with different levels of responsibility. This might vary widely from country to country and even hospital to hospital depending on the local requirements of the patients and the gastroenterology team. This survey was developed to assess the current nursing practice across Europe. Methods: A total of 220 nursing delegates who attended the N-ECCO Meeting and School in 2012 were invited to complete a survey. The survey consisted of 11 questions about the role and responsibility of nurses in the care of patients with inflammatory bowel disease. Results: Of the 220 European nurses, 192 responded (87%). A majority (61%) came from 5 European countries, most were between 30 and 50 years old, 73% worked in public hospitals and 68% were involved in adult care. The level of education varied equally between certificate level, degree level, diploma level and masters level. The nurses' level of experience, above that of the level of education, was the main factor in determining whether to offer advice or not to the patient, independent of a doctor (p < 0.01). Conclusion: This survey has provided an understanding of the nursing role in the care of patients with IBD across Europe as well as Australia, Canada and Israel. It demonstrates that the role of nurses in IBD exists in various settings within hospital care, providing complex management and autonomous nursing care in a range of services to. a significant number of patients with IBD. (C) 2014 European Crohn's and Colitis Organisation. Published by Elsevier B.V. All rights reserved.

Summary Background Nonvariceal acute upper gastrointestinal bleeding (AUGIB) is often accompanied by post-discharge anaemia. Aim To investigate whether iron treatment can effectively treat anaemia and to compare a 3-month regimen of oral iron treatment with a single administration of intravenous iron prior to discharge. Methods Ninety-seven patients with nonvariceal AUGIB and anaemia were enrolled in a double-blind, placebo-controlled, randomised study. The patients were allocated to one of three groups, receiving a single intravenous administration of 1000 mg of iron; oral iron treatment, 200 mg daily for 3 months; or placebo, respectively. The patients were followed up for 3 months. Results From week 4 onwards, patients receiving treatment had significantly higher haemoglobin levels compared with patients who received placebo only. At the end of treatment, the proportion of patients with anaemia was significantly higher in the placebo group (P

Neuroendocrine Tumors (NET) are rare tumors. Massive information regarding the disease has to exchange in a few days during admission. As the disease is rare only sparse information are available in Danish. No studies regarding NET-patients and their information needs have been located and it seems as an under-researched area of cancer management. Our aim was to identify NET patients' need for: information after establishment of the diagnosis; the needs for further Web-based information and the demands for a National Patients' Association (NPA). A survey including 39 NET-patients treated at Aarhus University Hospital was conducted. The result shows that < 50% was given written information regarding NET. A total of 68% had Web access and were active users of the Internet; 95% of patients' ≤ 65 years had Web access and all Web users responded positively towards a Danish homepage. A total of 72% would welcome an NPA. The results indicate the need for additional written and Web-based information in Danish. De...

Objective. The prevalence of anemia in inflammatory bowel disease (IBD) has been broadly described. The recurrence, type and burden of anemia remain unenlightened. The primary objective was to describe this. The secondary objective was to evaluate the implementation of European guidelines. Materials and methods. This longitudinal follow-up study included 300 IBD outpatients from six centers in Scandinavia. Patients were enrolled in a research cohort, in which each center included 5% of their IBD cohort. The study was prospectively planned, while data were retrospectively collected. The burden of anemia was calculated as number of months with anemia. A Markov model was used to calculate the probabilities of transitioning between stages. The European guidelines were used as the standard for anemia management. Results. Anemia affected > 50% of IBD outpatients during the 2-year observation period. Totally, 20% of the total observation time was spent in anemia. Over the 7200 months of observation, anemia was found in 1410 months. The most frequent type was combined anemia (63%). Combined anemia covers both anemia of chronic disease (ACD) and iron-deficiency anemia (IDA). Pure ACD was present in 21% of burden time, while pure IDA was present in 16% of burden time. The European guidelines have mainly been implemented. Conclusion. Anemia affected a majority of the IBD outpatients. One in five months, the patients were anemic. Anemia related to inflammation dominated the different types of anemia. Pure IDA was found in for 16%. These findings, despite a fair implementation of guidelines.

N-ECCO (Nurses-European Crohn's & Colitis Organisation) has been an active member of ECCO since 2007, with the purpose of providing nurse education and the opportunity for nurses to network internationally. N-ECCO aims through its activity to improve nurses' knowledge of Inflammatory Bowel Disease (IBD), share best practice and thus improve the quality of care accessed across Europe by patients with IBD. It has long been acknowledged in N-ECCO that nurses across Europe perform and provide varying roles in caring for patients with IBD, given the country-specific variances in role, title, salary and level of training. ### 1.1 Aims The intentions of the N-ECCO Consensus statements are to identify the positioning of nurses (adult and paediatric) in the care of patients with IBD and to provide a consensus on the ideal standard of minimum care that patients with IBD might expect, irrespective of the level of nurse training, title or country. The ‘ideal’ standard of nursing care was deemed an accurate measure and appropriate by the group in order to provide a standard for all nurses working with people with IBD. ### 1.2 Methods The N-ECCO Committee agreed the need for the consensus statements on the nurses' role in June 2011. Following the Standard Operating Procedure (SOP) of ECCO (www.ecco-ibd.eu/) a proposal for guidelines, along with draft contents for the statements, was submitted to the Governing Board. This was approved in November 2011, with a recommendation to conduct a survey to gain a clear understanding of the current situation of nurses within Europe in caring for patients with IBD. The survey was developed and refined within the N-ECCO committee in time for N-ECCO February 2012, when all attending nurse delegates were asked to complete it. Results of this survey will be published separately. There was an official call from the ECCO Office for nursing participants to be …

Background. Fatigue is a significant aspect of everyday life for patients with inflammatory bowel disease (IBD), and it influences their health-related quality of life. Little is known about fatigue from the patient’s perspective.Aim. To investigate how female IBD patients experience and handle fatigue.Methods. The study included 11 female outpatients. These patients were 40–59 years old and had IBD ≥ one year and a significantly increased fatigue score. Patients with severe active IBD, anaemia, comorbidity, or pregnancy were excluded. The included patients agreed to participate in a semistructured interview. The interviews were analysed using Malterud’s principles of systematic text condensation.Results. The patients described physical and mental symptoms of fatigue that led to social-, physical-, and work-related limitations with emotional consequences. To handle fatigue, the patients used planning, priority, acceptance, exercise, and support. Two of the eleven patients used exercise on a regular basis. Surprisingly, some patients indicated that they did not need to talk with professionals about their fatigue unless a cure was available. Conclusion. Fatigue in IBD includes physical and mental symptoms that limit the patients’ social-, physical-, and work-related lives. Despite this, some patients expressed that they had chosen to accept their fatigue.

Objective. To evaluate the prevalence of anemia and iron deficiency (ID) among patients with inflammatory bowel disease (IBD) in the Scandinavian countries. Material and methods. A cross-sectional study including 429 IBD patients from six centers in Denmark, Norway and Sweden. Patients were screened for anemia and ID. Each center included ∼5% of their IBD cohort. Patients were consecutively seen in the outpatient clinic, regardless of disease activity and whether the visits were scheduled or not. Results. The overall prevalence of anemia was 19% (95% CI: 16–23%). The prevalence was higher among patients with Crohn's disease than among patients with ulcerative colitis (p = 0.01). The etiology of anemia was as follows: iron deficiency anemia (20%), anemia of chronic disease (12%), and both conditions (68%). Less than 5% had folate acid or vitamin B12 deficiency. ID was found in 35% (CI: 31–40%) of the patients. Conclusions. Anemia was present in every fifth IBD patient and ID in every third IBD pat...

et al. about the comparison of oral iron treatment vs. intravenous (IV) iron treatment in patients with upper gastrointestinal haemorrhage. They reported that iron stores are replenished more effectively with IV iron compared with oral iron. The authors did not find any significant difference in Helicobacter pylori infection rates between the treatment groups at baseline. However, they did not mention the H. pylori treatment response rate, which could possibly influence the efficiency of oral iron treatment. Iron-deficient patients who have H. pylori do not seem to respond well to oral iron therapy until the bacterium has been eradicated. The possible pathogenic mechanisms include occult blood loss secondary to chronic erosive gastritis and decreased iron absorption secondary to atrophy-associated gastric hypochlorhydria. Gastric acid secretion is an important factor in iron absorption. An increase in the degree of alkalinity facilitates the oxidation of ferrous (Fe) iron to the ferric form (Fe), which is not absorbed. Thus, gastric hypoacidity should prolong the time to effectively treat iron deficiency anaemia. This is an important point for patients with bleeding ulcers, who are also iron deficient and require oral replacement therapies. Incidence of gastric atrophy strongly increases with age and is very low in the absence of H. pylori. After H. pylori eradication, inflammation decreases by 1– 3 months, whereas atrophy does not improve generally in all patients and requires a longer period for improvement of gastric hypoacidity. Helicobacter pylori and gastric atrophy should influence the oral iron treatment efficiency and extend the time for iron store replenishment. Therefore, we suggest that H. pylori and gastric atrophy should be considered before deciding the treatment route in iron deficiency anaemia.

We agree that all effects of a certain intervention need to be evaluated from a broad perspective. The effect of iron supplementation after a non-variceal acute upper gastrointestinal haemorrhage (AUGIB) is no exception. As mentioned in our paper, the topic of anaemia treatment after AUGIB was unenlightened at the time we performed our study. The primary outcome measurement when investigating anaemia and the effect of iron supplementations were naturally haemoglobin levels and markers for iron stores respectively. The results for these parameters, as well as adherence to oral iron therapy and considerations on the health economic aspects, are described in our paper. 2 Bounford and Ford ask for further data on the clinical impact on anaemia after AUGIB. We did measure patient-reported outcomes both during the study period (13 weeks) and in a 3-month follow-up period after the end of treatment. We used the EuroQol 5-item questionnaire and the Multidimensional Fatigue Inventory questionnaire to measure health-related quality of life and fatigue respectively. The results have been stratified for the presence or absence of anaemia at week 13, and we have compared the groups with each other and with a general population. The results are almost ready and a manuscript will be submitted to an international journal.