How to incorporate patients preference into ulcerative colitis current clinical management: initial document from a Spanish multidisciplinary steering committee

Abstract

Background To provide a patient-centred care in ulcerative colitis (UC), it is essential to address and to incorporate patient’s opinions, preferences, etc. Our aim was to define and integrate UC patient's preferences in the management of the disease in clinical practice.

Methods Qualitative study. A review of the literature was carried out in Medline and in the Clinical Queries of PubMed. We performed primary searches with Mesh terms and free text to identify preferences of patients with UC as well as clinical scenarios that may determine specific preferences. We selected articles that included: patients with UC, adults, who analysed their preferences. Likewise, only the following designs were included: meta-analysis, systematic reviews, clinical trials, studies, observations, and qualitative studies. The quality of the studies was evaluated with the Oxford scale. The results of the literature review were presented and discussed in a nominal group meeting, composed by a multidisciplinary steering committee of 6 gastroenterologists, 1 primary care physician, 1 nurse, and 1 patient. After that, a series of clinical relevant scenarios were identified and related patient preferences were proposed for them. This was the base to the generation of a set of general recommendations. The level of agreement among the multidisciplinary steering committee with the recommendations was established in a Delphi process in which the members of the committee voted from 0 = totally disagree to 10 = totally agree. Agreement was defined if at least 70% of the participants voted ≥7.

Results The review of the literature included 69 articles, most of them qualitative studies of moderate quality. UC patient’s preferences were classified according to different topics including information, treatment (pharmacological and non-pharmacological), disease follow-up, relations with health professionals, health system and with the administration. In the nominal group meeting several key clinical scenarios were identified: the diagnosis, follow-up, surgery and special clinical scenarios/patients profiles (children, teenagers, elderly, women, pregnancy and lactation, family, and socio-work environment). A total of 11 recommendations about the incorporation of UC patients into daily practice across the key clinical scenarios are were generated (see table). All of them reached the level of agreement established