Publications

This study investigates the real-world effectiveness of Filgotinib (FIL), an oral JAK1 preferential inhibitor, in patients with ulcerative colitis (UC). While the clinical efficacy of FIL has been established in the SELECTION trial, real-world data has been limited.

The first interim report of the GALOCEAN study presents week 10 results, showing that FIL significantly improves UC symptoms, health-related quality of life, and reduces fatigue in real-world clinical practice. As the study is ongoing, long-term data with a larger patient cohort will further assess the real-world effectiveness of FIL in UC.

October 2024

An international patient survey examined the impact of Crohn’s perianal fistula on patients' quality of life. Patients with both Crohn’s disease and perianal fistulae reported significantly greater negative effects on overall quality of life, well-being, relationships, social life, and work life compared to those with only Crohn’s disease. The study highlights the need for targeted therapeutic strategies to address these burdens.

August 2023

The study developed a core outcome set for real-world studies in adult patients with inflammatory bowel disease (IBD). Other indicators include, for example, clinical, endoscopic, and biomarker remission, fatigue, and urgency to go to the toilet. 

November, 2022

There is a high variability of out-of-packet patient costs of inflammatory bowel diseases (IBDs), but the issue is not widely recognised. Therefore, the study compared patient costs of IBDs between 12 European countries.

October, 2022

The study aims to find potential advanced treatment options for children with inflammatory bowel disease. A 2-day virtual meeting was held on April 14–15, 2021, for multi-stakeholders (clinical academics, patient community, pharmaceutical companies, and regulators) to discuss their perspectives on paediatric drug development for inflammatory bowel disease. 

September, 2022

As more therapeutic options with their own characteristics become available for inflammatory bowel disease (IBD), drug development and individual treatment decision-making needs to be tailored towards patients' preferences and needs. This study aimed to understand patient preferences among IBD patients, and their most important treatment outcomes and unmet needs.

September, 2022

The pandemic of COVID-19 had posed challenges in every aspect of the people’s life. COVID-19 had affected all age groups in both previously healthy individuals and those with chronic disease including IBD. This study aimed to investigate the occurrence and factors associated with psychosocioeconomical and medical changes in patients with IBD during the COVID-19 pandemic and post-pandemicperiod in China.

May, 2021 

The study showed a high relevance of the indirect cost of IBD in the context of economic evaluation, as well as a between-country variability of work-related impairment or informal care.

July, 2022

Heterogeneity exists in reported outcomes and outcome measurement instruments (OMI) from observational studies. A core outcome set (COS) for observational and real-world evidence (RWE) in inflammatory bowel disease (IBD) will facilitate pooling large datasets. This systematic review, describes and classifies clinical and patient-reported outcomes, for COS development.

May, 2021

Anti-SARS-CoV-2 vaccines clinical trials did not include patients with immune-mediated conditions such as inflammatory bowel disease (IBD). The study aimed to describe the implementation of anti-SARS-CoV-2 vaccination among IBD patients, patients' concerns and side-effect profile of the anti-SARS-CoV-2 vaccines using real-world data.

May, 2022

Ulcerative colitis (UC) is an inflammatory bowel disease with increasing prevalence worldwide. Current treatment strategies place considerable economic and humanistic burdens on patients. The aim of this study was to determine the socioeconomic burden of UC in adult patients in European countries in a real-world setting.

December, 2021

After publication of the LUCID study, the authors reported that the author name “Avedano” was incorrectly written as “Avendano”.

The original article has been updated.

December, 2021

Perianal fistulas (PAF) in Crohn’s disease (CD) may impair social performance, sexual function, life activities and overall patients’ quality of life (QoL). Patient experience is important in the treatment decision making and in providing adequate support. Despite the clinical relevance, few studies have addressed the patient perspective on the impact of PAF and complex PAF (CPAF) in CD on QoL. 

May, 2021

The frequency of inflammatory bowel disease (IBD) is increased after marriage to an individual with the disease. Importantly, the offspring of these couples have a significant risk for developing the disease. Herein, the study  aimed to better characterise conjugal IBD.

February, 2021

Surgery is indicated in selected patients with inflammatory bowel disease (IBD). However, due to a negative perception, surgery may be delayed, leading to possible unfavourable outcomes. The aim of this work was to investigate patients’ perceptions of surgery and the impact on reported outcomes.

August, 2020

Poster presentation

Smoking has detrimental effects on Crohn’s disease (CD) activity while data on ulcerative colitis (UC) are conflicting. Little is known about the use and impact of alternative smoking products in inflammatory bowel diseases (IBD). The aim of the study is to understand the patients’ perceptions of the impact of smoking on their IBD and to assess differences between CD and UC patients. 

August, 2020

In this analysis we aimed to describe Brazilian inflammatory bowel disease (IBD) patients’ knowledge and perceptions regarding biosimilars and compare with viewpoints from non-Brazilian patients.

August, 2020

Patients with chronic diseases have experienced substantial changes to the routine management of their conditions during the coronavirus disease 2019 (COVID-19) pandemic.1,2 Although insights into the management of patients with inflammatory bowel disease (IBD) during the outbreak have been described,3 little attention has been paid to the patients’ point of view. Therefore, we did an anonymous web survey with the support of the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) between March 30 and April 16, 2020, to investigate the concerns, fears, and behaviours of patients with IBD during the early phase of the COVID-19 pandemic. 

July, 2020

The management of inflammatory bowel disease [IBD] is complex, and requires tight control of disease activity, close monitoring to avoid treatment side effects, health care professionals with expertise in IBD, and an interdisciplinary, holistic approach. Despite various efforts to standardise structures, processes, and outcomes,1–8 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 which 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 health care 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.

February, 2020

Biologics have transformed the treatment of immune-mediated inflammatory diseases such as rheumatoid arthritis (RA) and inflammatory bowel disease (IBD). Biosimilars-biologic medicines with no clinically meaningful differences in safety or efficacy from licensed originators-can stimulate market competition and have the potential to expand patient access to biologics within the parameters of treatment recommendations. However, maximizing the benefits of biosimilars requires cooperation between multiple stakeholders.

Regulators and developers should collaborate to ensure biosimilars reach patients rapidly without compromising stringent quality, safety, or efficacy standards. Pharmacoeconomic evaluations and payer policies should be updated following biosimilar market entry, minimizing the risk of imposing nonmedical barriers to biologic treatment. In RA, disparities between treatment guidelines and national reimbursement criteria could be addressed to ensure more uniform patient access to biologics and enable rheumatologists to effectively implement treat-to-target strategies. In IBD, the cost-effectiveness of biologic treatment earlier in the disease course is likely to improve when biosimilars are incorporated into pharmacoeconomic analyses. Patient understanding of biosimilars is crucial for treatment success and avoiding nocebo effects.

Full understanding of biosimilars by physicians and carefully considered communication strategies can help support patients initiating or switching to biosimilars. Developers must operate efficiently to be sustainable, without undermining product quality, the reliability of the supply chain, or pharmacovigilance. Developers should also facilitate information sharing to meet the needs of other stakeholders. Such collaboration will help to ensure a sustainable future for both the biosimilar market and healthcare systems, supporting the availability of effective treatments for patients.

February, 2020

The living with Ulcerative Colitis (UC), identifying the socioeconomic burden in Europe (LUCID) study was a descriptive, retrospective, cross-sectional, European, multi-site, bottom-up Burden of Illness research study carried out by HCD Economics and the University of Chester in partnership with Crohn's and Colitis UK.

October, 2019

The Living with Ulcerative Colitis: Identifying the socioeconomic burden in Europe (LUCID) study was a descriptive, retrospective, cross-sectional, European (France, Germany, Italy, Spain, United Kingdom, Denmark, Norway, Poland, Romania and Turkey), multi-site bottom-up Burden of Illness research study carried out by HCD Economics and the University of Chester in partnership with Crohn's and Colitis UK.

October, 2019

The aim of this survey was to find out whether the perspectives of patients with inflammatory bowel disease concerning biosimilars have changed since the publication of our last survey carried out in 2014–2015.

October, 2019

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. 

October, 2018

With the imminent arrival of oncology biosimilars in the therapeutic paradigm, stakeholders including a clinician, specialist nurse, patient advocate, regulator and economist provide their perspective on optimising the uptake of these new agents in the treatment of cancer. A number of key messages emerge, based on the discussion that took place during a session of the European Society for Medical Oncology’s Annual Congress, ESMO Madrid 2017. First, for successful integration of biosimilars into the global healthcare paradigm, informing and educating the full scope of stakeholders, including clinicians, nurses, pharmacists and patients, is primordial. Success is dependent on providing solid evidence and ensuring all voices are heard. Second, for oncology medicines, much can be learnt from the growing experience of approved biosimilars in other disease indications, with success stories for patients, their healthcare providers and healthcare budgets alike. Finally, effective sustainability of the impact on healthcare budgets and the redirection of these savings require education and transparency.

September, 2018

Iron deficiency (ID) and iron deficiency anaemia (IDA) are conditions frequently observed in patients with inflammatory bowel disease (IBD) and require appropriate treatment. This study investigated patient and physician perspectives on the management of these conditions.

January, 2017

The aim of this survey was to find out the patients' perspectives concerning biosimilars. An online survey consisting of 14 questions was made available between November 2014 and October 2015. Only respondents who had heard of biosimilars were asked to respond the final twelve questions.

July, 2016

Anaemia is frequently seen in inflammatory bowel disease (IBD) and needs appropriate treatment. This online questionnaire investigated the patients' perceptions of anaemia: symptoms, prevalence, treatment and impact on quality of life.

December, 2014

Although inflammatory bowel diseases (IBD) significantly impact the patient's quality of life, no European-level data exists on patients’ perspectives. The primary objective of this survey was to obtain an international perspective of the impact of IBD on patients’ lives. Secondary objectives included obtaining a better understanding of the quality of care, access to care, and differences between countries, age groups, and sub-groups of IBD. 

October, 2014

Inflammatory bowel diseases (IBD) significantly impact the lives of patients. The European Federation of ulcerative Colitis and Crohn’s Associations (EFCCA) undertook a pan-European patient survey assessing the perspectives of IBD patients about their disease and its impact on their lives, relationships and careers. The project has been supported by an unrestricted educational grant from Abbott.

February, 2012