The management of inflammatory bowel disease (IBD) is complex, and requires tight control of disease activity, close monitoring to avoid treatment side effects, healthcare professionals with expertise in IBD and an interdisciplinary, holistic approach. Despite various efforts to standardise structures, processes and outcomes1-8, and due to the high variability at the local, national and international levels, there are still no clear definitions or outcome measures available to establish quality of care standards for IBD patients that are applicable in all contexts and all countries. For this reason, the European Crohn’s and Colitis Organisation (ECCO) supported the construction of a list of criteria summarising current standards of care in IBD. The list comprises 111 quality standard points grouped into three main domains (structure n=31, process n=42, outcomes n=38) and is based on scientific evidence, interdisciplinary expert consensus and patient-oriented perspectives. The list of proposed criteria is intended to represent the position of ECCO regarding the optimum quality of care that should be available to patients. Since healthcare systems and regulations vary considerably between countries, this list may require adaptation at local and national levels. It is recognised that not all these criteria that have been identified as optimal will be available in every unit. However, ECCO will continue its efforts to develop and coordinate projects and initiatives that will help to guarantee optimal quality of care for all IBD patients.
Objective: Inflammatory-Bowel-Disease (IBD) is a lifelong illness with significant impact on health-related quality of life (HRQoL). The disease-burden causes work productivity impairment, such as sick-leave and restriction of leisure time activities. From a societal perspective, productivity loss often contributes significantly to the total costs. The aim of the study is to analyze the impact of disease-burden on work productivity, daily activities, and HRQoL. Methods: We performed a survey among Austrian patients with IBD to assess general questions about demography and disease pattern, impaired work productivity and reduced daily activities using the Work Productivity and Activity Impairment questionnaire and HRQoL utilizing the Short Inflammatory Bowel Disease Questionnaire (SIBDQ). Associations were assessed employing linear regressions. The questionnaire was circulated by the Austrian Crohn's Disease/Ulcerative Colitis Association. Results: In total, 510 patients with median age of 40 years completed the questionnaire. Patients had a median disease-duration of 9 years, 46% were treated with biologics and 64% were employed. The median SIBDQ score was 45 (16-69). Patients in self-assessed remission (n ¼ 319) and relapse (n ¼ 96) differed by 18 points on the SIBDQ score (p value < 0.0001). Mean work productivity reduction amounted to 7 h 17 min (95% CI 6:05-8:29) during the last 7 days. Work absenteeism accounted for 4 h 28 min (95% CI 3:25-5:31) and reduced productivity at the workplace (presenteeism) for 2 h 49 min (95% CI 2:31-3:07). During a relapse, 12 h 9 min were lost (p value < 0.0001). Productivity reduction correlated with HRQoL (r ¼ 0.3964). In total, 143 eper patient per week (95% CI 119-167) were lost (7,411 eper year). On average, patients lost 4 h (95% CI 3:44-4:16) of unpaid daily activities; 3 h 17 min the employed subgroup and 5 h 19 min the not employed. Conclusion: IBD leads to a substantial burden of disease, which is associated with indirect costs for society related to work ability reduction. HRQoL significantly influences loss of work productivity. Improving HRQoL should be a key factor to reduce disease burden and societal costs.
Objectives: Cost-effective screening strategies are needed to make Hepatitis C virus (HCV) elimination a reality. Our objective was to determine if birth cohort-based screening could be cost-effective in Italy. Methods: A Markov disease burden model was developed. An economic impact module was added to quantify medical costs and health effects associated with HCV infection. The cost-effectiveness threshold was set at V25,000. Modeled outcomes for disease burden, medical costs, and health effects of HCV infection were assessed under the status quo and as well as a scenario to achieve the WHO targets for eliminating HCV by 2030 under four screening strategies:
With the changes in health care occurring in South Africa, new functions concerning the community nurse are being presented. The goal of the study was to explore and describe the role of the community nurse in health committees.
An explorative, descriptive design was used and the empirical part was undertaken within the context of a metropolitan local authority. After conducting a literature study, six major roles of the community nurse on health committees were identified. After that a questionnaire was presented to community nurses to explore and describe their perceptions about the role of the community nurse on health committees. An interview schedule based on the literature study was drafted for presentation to selected members of health committees. Lastly guidelines describing the role of the community nurse on health committees were developed based on the findings of the study
Background Large scale data integration and comparison require standardised data collection. As part of the Health Outcomes Observatory (H2O) project, a core data set for IBD (including case-mix variables, biomarkers, clinical and patient-reported outcomes) that can uniformly be implemented across IBD centres was defined through an international, multi-stakeholder Delphi process. The next step was to identify the most appropriate instruments and minimum frequency to measure the patient-reported outcomes included in this core data set. Fierens L et al, UEG Week 2022. Methods A group of key stakeholders assessed potential instruments that were identified through a literature review. The literature review report included details on the development process, validation studies, extensiveness, required licenses and available translations of the identified instruments. The stakeholders were then asked to indicate in a survey which instrument(s) they considered most important to include in the core data set and at what minimum frequency they would collect these data. The collected insights were discussed at an online consensus meeting in Sept 2022 where a final selection of instruments and minimum frequency was agreed on. Results In total, 18 stakeholders from 10 different countries completed the survey (7 IBD specialists, 4 patient advocates, 3 pharma experts, 2 IBD nurses, 1 expert in patient-reported outcome measurements and 1 regulator). Also 18 stakeholders attended the consensus meeting (6 IBD specialists, 5 patient advocates, 3 academic researchers, 3 pharma experts and 1 IBD nurse from 11 different countries). The PRO-2 (both for UC and CD) and the IBD-Control were indicated as the most appropriate instruments to collect the IBD-specific outcomes, and the PROMIS Global Health and PROMIS Self-Efficacy short form to collect the generic patient-reported outcomes. At the consensus meeting it was additionally agreed to use the generic Health Monitor (disease acceptance and control) and to supplement the set with additional single items to measure bowel incontinence, bowel urgency, IBD medication adherence and the extent to which patients feel informed (Figure). It was agreed that the IBD-specific outcomes would be collected at every consultation with an IBD practitioner, and generic outcomes every 12 months. Conclusion This study recommends an instrument set and minimum frequency to measure the patient-reported outcomes included H2O core data set for IBD, agreed on by a group of key stakeholders. This set will initially be implemented in five European university clinics and subsequently in additional IBD clinics, enabling data integration and comparisons on a larger scale.
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