Most of the included HRQoL measures did not include all the required measurement properties or had a problem with their methodological quality. The most widely used and validated measure was the IBDQ. Further validation studies are required to support the use of other HRQoL measures.

CUCQ-8 is a short questionnaire that has the potential to be an efficient tool for assessing the QoL of all patients with IBD in clinical practice.

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Objective To develop, validate and apply a generic clinical severity index applicable to all adult patients with inflammatory bowel disease (IBD). Design A review of the literature and an expert focus group consultation were carried out in order to draw out relevant items from existing literature. The new index was called the IBD Index (IBDEX). Standard psychometric analysis was carried out. The construct validity was assessed against biochemical markers, clinical and endoscopic indices. The new index was completed again within 6 weeks to check responsiveness and reproducibility. Results IBDEX was used to assess 255 adult patients with IBD (125 with Crohn's disease and 130 with ulcerative colitis), and 64 patients were re-evaluated within 6 weeks. It had good internal consistency (Cronbach's α=0.79) and correlated very well with the Harvey Bradshaw Index (r=0.94), the Simple Clinical Colitis Activity Index (r=0.92), the Mayo Clinic Index (r=0.87) and the Simple Endoscopic Score (r=0.76), all with p values <0.05. IBDEX had a moderate but positive correlation with C reactive protein (r=0.51) and erythrocyte sedimentation rate (r=0.36) p values both <0.05. The test-retest reliability was good (intraclass correlation coefficient 0.97) and responsiveness ratio was 2.27. Conclusions IBDEX is the first properly validated Clinical Disease Severity Index in IBD. Our results showed that it is valid, reliable and reproducible and has the potential to be used in clinical practice.

The aim of my research was to evaluate a novel way to empower patients with inflammatory bowel disease by giving them access to personalised information about their condition and management. I also reviewed the literature relating to personal health records and have reflected on my experience of conducting research from my perspective as a nurse practitioner. Methods We took a pragmatic mixed methods approach to the study. We convened a local focus group and employed a summative analysis technique to explore the topic. Based on the outcomes of the focus group we developed an intervention (ELIJAH) that extended the local IBD electronic health record to enable the creation of individualised IBD health reports that were educationally enriched. We tested this intervention in a pragmatic randomised controlled feasibility study with 61 patients from one District General Hospital in South Wales. From the learning and recommended modifications of the feasibility study we drew up a protocol for a fully powered phase III trial of the intervention. Results The focus group showed that patients wanted more access to their IBD health records and individualised education about their disease. The randomised controlled feasibility study of the ELIJAH intervention showed that the intervention met the clinical and feasibility criteria, and the intervention with modifications could be progressed for a fully powered phase III trial. Conclusion The ELIJAH intervention is wanted by patients and is feasible to produce and test.