72 research outputs found

    What factors might drive Voluntary Childlessness (VC) in women with IBD? Does IBD-specific pregnancy-related knowledge matter?

    No full text
    Introduction: Inflammatory Bowel Disease (IBD) affects many women of child bearing age and rates of voluntary childlessness (VC) exceed those of the general population by far. The factors surrounding VC remain incompletely understood. Methods: Female members of the patient organisation Crohn’s and Colitis UK aged 18-45 years were invited to complete an online questionnaire collecting data on demographics, disease characteristics, pregnancy specific disease-related knowledge (CCPKnow) and childlessness status. Results: 1324 women (mean age 33 years) completed the survey. 776 (59%) were diagnosed with from Crohn’s disease (CD), 496 (38%) with ulcerative colitis (UC) and 4% with IBD-U. 40% had children (14% pre-diagnosis (I); 26% post-diagnosis (II)), 36% planned to have children at some stage (III), 7% reported fertility problems (IV) and 17% were classified as voluntarily childless (VC). VC was associated with poorer CCPKnow scores (5.98 vs 7.47 in (III); p<0.001), older age (35y vs 28y in (II); p<0.001), unemployment (9.7% VC; p<0.001), being single (34.5% VC; p<0.001, not seeking medical advice (p<0.001), and diagnosis of CD (19.3% vs 13.9% UC; p=0.015). Women with VC had more hospital admissions (mean 2.85 vs 2.17 (III); p=0.03) and surgical interventions (mean 1.27 vs 0.65 (III); p<0.001). Conclusion: The aetiology of VC in women with IBD is multifactorial. Women’s choice regarding children appears related to disease burden. VC is also associated with poor knowledge (CCPKnow) and women may stay childless unnecessarily. Patient education programmes could help to reduce the rate of VC in women with IBD through correcting misconceptions and alleviating patient concerns

    Stigmatisation and resilience in inflammatory bowel disease

    Get PDF
    © 2019, The Author(s). Inflammatory bowel disease, which includes Crohn’s disease and ulcerative colitis, is an immune-mediated, chronic relapsing disorder characterised by severe gastrointestinal symptoms that dramatically impair patients’ quality of life, affecting psychological, physical, sexual, and social functions. As a consequence, patients suffering from this condition may perceive social stigmatisation, which is the identification of negative attributes that distinguish a person as different and worthy of separation from the group. Stigmatisation has been widely studied in different chronic conditions, especially in mental illnesses and HIV-infected patients. There is a growing interest also for patients with inflammatory bowel disease, in which the possibility of disease flare and surgery-related issues seem to be the most important factors determining stigmatisation. Conversely, resilience represents the quality that allows one to adopt a positive attitude and good adjustments despite adverse life events. Likewise, resilience has been studied in different populations, age groups, and chronic conditions, especially mental illnesses and cancer, but little is known about this issue in patients with inflammatory bowel disease, even if this could be an interesting area of research. Resilience can be strengthened through dedicated interventions that could potentially improve the ability to cope with the disease. In this paper, we focus on the current knowledge of stigmatisation and resilience in patients with inflammatory bowel disease

    Factors affecting clinical decision-making in inflammatory bowel disease and the role of point-of-care calprotectin

    Get PDF
    Objectives: Patient-reported symptoms correlate poorly with mucosal inflammation. Clinical decision-making may, therefore, not be based on objective evidence of disease activity. We conducted a study to determine factors associated with clinical decision-making in a secondary care inflammatory bowel disease (IBD) population, using a cross-sectional design. Methods: Decisions to request investigations or escalate medical therapy were recorded from outpatient clinic encounters in a cohort of 276 patients with ulcerative colitis (UC) or Crohn’s disease (CD). Disease activity was assessed using clinical indices, self-reported flare and faecal calprotectin ≄ 250 ”g/g. Demographic, disease-related and psychological factors were assessed using validated questionnaires. Logistic regression was performed to determine the association between clinical decision-making and symptoms, mucosal inflammation and psychological comorbidity. Results: Self-reported flare was associated with requesting investigations in CD [odds ratio (OR) 5.57; 95% confidence interval (CI) 1.84-17.0] and UC (OR 10.8; 95% CI 1.8-64.3), but mucosal inflammation was not (OR 1.62; 95% CI 0.49-5.39; and OR 0.21; 95% CI 0.21-1.05, respectively). Self-reported flare (OR 7.96; 95% CI 1.84-34.4), but not mucosal inflammation (OR 1.67; 95% CI 0.46-6.13) in CD, and clinical disease activity (OR 10.36; 95% CI 2.47-43.5) and mucosal inflammation (OR 4.26; 95% CI 1.28-14.2) in UC were associated with escalation of medical therapy. Almost 60% of patients referred for investigation had no evidence of mucosal inflammation. Conclusions: Apart from escalation of medical therapy in UC, clinical decision-making was not associated with mucosal inflammation in IBD. The use of point-of-care calprotectin testing may aid clinical decision-making, improve resource allocation and reduce costs in IBD

    Data on erosion and hydrogen fuel retention in Beryllium plasma-facing materials

    Get PDF
    ITER will use beryllium as a plasma-facing material in the main chamber, covering a total surface area of about 620 m(2). Given the importance of beryllium erosion and co-deposition for tritium retention in ITER, significant efforts have been made to understand the behaviour of beryllium under fusion-relevant conditions with high particle and heat loads. This paper provides a comprehensive report on the state of knowledge of beryllium behaviour under fusion-relevant conditions: the erosion mechanisms and their consequences, beryllium migration in JET, fuel retention and dust generation. The paper reviews basic laboratory studies, advanced computer simulations and experience from laboratory plasma experiments in linear simulators of plasma-wall interactions and in controlled fusion devices using beryllium plasma-facing components. A critical assessment of analytical methods and simulation codes used in beryllium studies is given. The overall objective is to review the existing set of data with a broad literature survey and to identify gaps and research needs to broaden the database for ITER.Peer reviewe

    Inflammatory bowel disease patient‐reported quality assessment should drive service improvement: A national survey of UK IBD units and patients

    Get PDF
    © 2022 The Authors. Published by Wiley. This is an open access article available under a Creative Commons licence. The published version can be accessed at the following link on the publisher’s website: https://doi.org/10.1111/apt.17042Background & Aims Healthcare service provision in inflammatory bowel disease (IBD) is often designed to meet targets set by healthcare providers rather than those of patients. It is unclear whether this meets the needs of patients, as assessed by patients themselves. This nationwide study assessed patients' experience of IBD and the healthcare they received, aiming to identify factors in IBD healthcare provision associated with perceived high-quality care. Methods Using the 2019 IBD Standards as a framework, a national benchmarking tool for quality assessment in IBD was developed by IBD UK, comprising a Patient Survey and Service Self-Assessment. Results In all, 134 IBD services and 9757 patients responded. Perceived quality of care was lowest in young adults then increased with age, was higher in males and those >2 years since diagnosis. No hospital services met all the National IBD Standards for recommended workforce numbers. Key metrics associated with patient-reported high-quality care were as follows: identification as a tertiary centre, patient information availability, shared decision-making, rapid response to contact for advice, access to urgent review, joint medical/surgical clinics and access to research (all p < 0.001). Higher numbers of IBD nurse specialists in a service was strongly associated with patients receiving regular reviews and having confidence in self-management and reporting high-quality care. Conclusions This extensive patient and healthcare provider survey emphasises the importance of aspects of care less often measured by clinicians, such as communication, shared decision-making and provision of information, and demonstrates that IBD nurse specialists are crucial to meeting the needs of people living with IBD.This work was supported by Crohn's & Colitis UK.Published onlin

    A propensity score-matched, real-world comparison of ustekinumab vs vedolizumab as a second-line treatment for Crohn's disease. The Cross Pennine study II

    Get PDF
    BackgroundThe optimal choice of biological agents after failure of anti-tumour-necrosis-factor-(TNF)α agent in Crohn's disease (CD) is yet to be defined.AimsTo assess the effectiveness and safety of ustekinumab compared to vedolizumab as second-line treatment in CD patients who failed anti-TNFα therapy.MethodsRetrospective analysis of clinical response and remission at 14 and 52 weeks to ustekinumab by physician global assessment (PGA). A propensity score-matched analysis with a cohort treated with vedolizumab was performed.ResultsOf 282 patients (mean age 40 ± 15, F:M ratio 1.7:1) treated with ustekinumab, clinical response or remission was reached by 200/282 patients (70.9%) at 14 weeks, and 162/259 patients (62.5%) at 52 weeks. Overall, 74 adverse events occurred, of which 26 were labelled as serious (8.3 per 100 person-year). After exclusion of patients without prior anti-TNFα exposure and patients previously exposed to vedolizumab or ustekinumab, we analysed 275/282 patients (97.5%) on ustekinumab and 118/135 patients (87.4%) on vedolizumab. Propensity score analysis revealed that at 14 weeks, patients treated with ustekinumab were 38% (95% CI 25%-50%; P ConclusionsUstekinumab was effective and well tolerated in this real-world cohort. While ustekinumab proved more effective at 14-weeks, we found no statistically significant differences at 52 weeks compared to vedolizumab
    • 

    corecore