Measuring quality standards in chronic intestinal failure: A pilot international survey

It is recognised that the approach to chronic intestinal failure (CIF) care delivery can differ both within and between countries. The aim of this pilot study was to explore the utility and fulfilment of the European Society for Clinical Nutrition and Metabolism-endorsed quality-of-care standards across European CIF centres.

To evaluate differential approaches to quality-of-care delivery, lead clinicians of small (<30 current patients), medium (30-100 patients) and large (>100 patients) CIF centres from five countries were asked to complete a 139-item questionnaire. As per the standards, the questionnaire was divided into four subsections: background information concerning the CIF centre, structure and process of care and CIF outcome monitoring.

The response rate was 100 % from 15 CIF centres across five countries: 20 % responses from Belgium, 26.7 % from Denmark, 20 % from France, 20 % from United Kingdom and 13.3 % from Portugal. Despite an extensive number of questions, the questionnaire was completed without any missing data, while also allowing for further comments that elaborate on centre experience. The gaps identified included (1) providing two specialist clinicians with expertise in IF restricting cross-cover arrangements; (2) access to psychology and psychiatry services; (3) access to specific ward area; (4) establishment of networks with other services; (5) patient engagement; (6) CIF outcome monitoring.

This pilot study clearly demonstrated the utility and fulfilment of the quality-of-care standards in selected European CIF centres. Future work will include expansion of participating centres, as well as annual reassessment of quality-of-care standards per centre.