The results of this survey can be used in defining strategic priorities and planning projects and awareness raising activities. The unmet needs of IBD patients can be better demonstrated and communicated to the public, health service managers and politicians.
Most patients were not familiar with biosimilars, and those who were had doubts and concerns about the biosimilars' safety and efficacy. The patients wished to be informed and involved in decision-making concerning biosimilars.
The management of inflammatory bowel disease (IBD) is complex, and requires tight control of disease activity, close monitoring to avoid treatment side effects, healthcare professionals with expertise in IBD and an interdisciplinary, holistic approach. Despite various efforts to standardise structures, processes and outcomes1-8, 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 that 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 healthcare 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.
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