Development and Validation of a Sexual Quality of Life Score for Youths with Inflammatory Bowel Disease.

Background And Aims: Inflammatory Bowel Disease (IBD) are known to impact patients 'sexual lives. The aim of this study is to create and validate a sexual QoL designed for youth with IBD.

Methods: This study was conducted in two phases: development of the score and validation of the items.

Impact of Inflammatory Bowel Disease on Patients' Caregivers: Results From a French Survey.

Background: The impact of inflammatory bowel disease (IBD) on caregivers has rarely been investigated. Our work aims to explore the burden of IBD on the different aspects of caregivers' lives.

Methods: We conducted an online survey via the social network of the French IBD patient organization addressed to patients' caregivers who were asked to fill in a questionnaire covering the impact of the disease on different aspects of their lives.

Web-based and machine learning approaches for identification of patient-reported outcomes in inflammatory bowel disease.

Background: Messages from an Internet forum are raw material that emerges in a natural setting (i.e., non-induced by a research situation).

Flare-IBD: development and validation of a questionnaire based on patients' messages on an internet forum for early detection of flare in inflammatory bowel disease: study protocol.

Introduction: Crohn's disease and ulcerative colitis, the two major forms of inflammatory bowel disease (IBD), are chronic disabling conditions characterised by flares followed by periods of remission. However, patients with IBD are seen every 3-6 months in the outpatient clinic, and the occurrence of a flare between two outpatient visits is not captured. To our knowledge, there is no validated patient-reported outcome (PRO) tool to measure the phenomenon of flare in IBD.

[Participation of patients in the continuing training of professionals].

In the context of the evolution of care practices, continuing training enables caregivers to keep their practices up-to-date and to treat the patient more as a whole, by drawing on their experience in the field. Trainers support them in the development of academic and practical skills for which the expertise of patients plays a significant and recognised role. Patient-trainers enable caregivers to understand the constraints of chronicity and its treatment, not always visible when a purely clinical approach is adopted.