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P214 How to incorporate patients preference into ulcerative colitis current clinical management: initial document from a Spanish multidisciplinary steering committee

F. Casellas*1, D. Ginard2, S. García-López3, Y. González-Lama4, F. Arguelles-Arias5, M. Barreiro-de Acosta6, L. Marín Sánchez7, J. M. Mendive8, R. Saldaña9

1Hospital Universitari Vall d'Hebron, Servicio Digestivo, Barcelona, Spain, 2Hospital Universitario Son Espases, Servicio Digestivo, Palma de Mallorca, Spain, 3Hospital Universitario Miguel Servet, Servicio Digestivo, Zaragoza, Spain, 4Hospital Universitario Puerta de Hierro-Majadahonda, Unidad Enfermedad Inflamatoria Intestinal, Madrid, Spain, 5Hospital Universitario Virgen Macarena, Aparato Digestivo, Sevilla, Spain, 6Hospital Clínico Universitario de Santiago de Compostela, Unidad Enfermedad Inflamatoria Intestinal, Santiago de Compostela, Spain, 7Hospital Universitario Germans Trias i Pujol, Badalona, Unidad Enfermedad Inflamatoria Intestinal, Badalona, Spain, 8La Mina Primary Care Centre, Sant Adrià de Besós, Spain, 9ACCU España, Gerencia, Madrid, Spain

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

1The opinion and preferences of patients with ulcerative colitis should be taken into account in routine clinical practiceLevel of agreement, 100%
2There are key clinical scenarios such as the diagnosis, follow-up, surgery or specific patients profiles like children, adolescents, women or the elderly, in which we must have a special sensitivity with their opinion and preferencesLevel of agreement, 100%
3Regarding to the diagnosis, it is recommended to provide and discuss the information about the disease and its impact through different visits, focussing this information on patients concerns and needs, adapting it to patients and disease features, in orderLevel of agreement, 87.5%
4At the time of the diagnosis, regarding the disease (pharmacological and non-pharmacological) treatment, it is recommended to make informed and shared decisions with the patients, that includes the definition of therapeutic objectivesLevel of agreement, 100%
5Regarding to the diagnosis, the relationship between patients and health professionals should be honest, trustworthy, empathetic, and it should also focussed on patient’s needs and concernsLevel of agreement, 87.5%
6During the follow-up, it is recommended to follow the same recommendations described for the diagnosisLevel of agreement 87.5%
7During the follow-up, continuity of care is recommended, as well as a coordinated and efficient multidisciplinary care when neededLevel of agreement, 87.5%
8During the follow-up, medical visits schedule should be adapted to patients characteristics and needs, allowing urgent or on-demand consultation (face-to-face, tele-medicine, etc.)Level of agreement, 100%
9During the follow-up, it is recommended to address other issues that have not been covered in the diagnosis and/or that appear during the follow-up, such as intimate relationships or work problemsLevel of agreement, 87.5%
10During the follow-up it is recommended to evaluate that the patient follows the treatment as agreed and with confidenceLevel of agreement, 100%

Conclusion

UC patients preferences should always be taken into account in the management of the disease.