Publications

In this section you will find a list of scientific publications relevant to the IBD community and in which EFCCA has been the co-author.

Out‐of‐pocket expenses of patients with inflammatory bowel disease

Out‐of‐pocket expenses of patients with inflammatory bowel disease: a comparison of patient‐reported outcomes across 12 European countries October, 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. Read Study...

Paediatric inflammatory bowel disease

Paediatric inflammatory bowel disease: a multi-stakeholder perspective to improve development of drugs for children and adolescents September, 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...

What are the unmet needs and most relevant treatment outcomes according to patients with inflammatory bowel disease?

What are the unmet needs and most relevant treatment outcomes according to patients with inflammatory bowel disease? A qualitative patient preference study 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'...

Factors associated with medical and psycosocioeconomic changes in IBD during the COVID-19 pandemic and post-pandemic period

Factors associated with medical and psycosocioeconomic changes in IBD during the COVID-19 pandemic and post-pandemic period May, 2021  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...

Indirect Costs of Inflammatory Bowel Diseases

Indirect Costs of Inflammatory Bowel Diseases July, 2022 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. Read Study

A narrative systematic review and categorisation of outcomes in Inflammatory Bowel Disease to inform a Core Outcome Set for real-world evidence

A narrative systematic review and categorisation of outcomes in Inflammatory Bowel Disease to inform a Core Outcome Set for real-world evidence May, 2021 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...

Anti-SARS-CoV-2 vaccines in IBD

Implementation and short-term adverse events of anti-SARS-CoV-2 vaccines in Inflammatory Bowel Disease patients: an international web-based survey May, 2022 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...

The Lucid Study

The LUCID study: living with ulcerative colitis; identifying the socioeconomic burden in Europe December, 2021 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...

Correction to: The LUCID study

Correction to: The LUCID study: living with ulcerative colitis; identifying the socioeconomic burden in Europe 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. Read Study 

The impact of perianal fistula in Crohn’s disease on quality of life

The impact of perianal fistula in Crohn’s disease on quality of life: results of a patient survey conducted in Europe May, 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...