Edouard Louis, MD1, Juan Ramos, MD2, Jesus Cuervo, MD2, Uri Kopylov, MD, FEBGH3, Manuel Barreiro de Acosta, MD4, Sara McCartney, MD5, Greg Rosenfeld, MD6, Dominik Bettenworth, MD7, Ailsa Hart, MD8, Kerri Novak, MD9, Xavier Donnet, MD10, David Easton, MD11, Roberto Saldana, MD12, Katja Protze, MS13, Eyal Tzur, MD14, Gabriela Alperovich Lehrer, MD15, Francesc Casellas, MD16
1CHU de Liège et Université de Liège, Liège, Liege, Belgium; 2Axentiva Solutions, Santa Cruz de Tenerife, Canarias, Spain; 3Sheba Medical Center, Ramat Gan, Tel Aviv, Israel; 4Complejo Universitario de Santiago de Compostela, Santiago de Compostela, Galicia, Spain; 5University College London Hospitals, London, England, United Kingdom; 6University of British Columbia, Vancouver, BC, Canada; 7University Hospital Munster, Munster, Rheinland-Pfalz, Germany; 8London North West Healthcare, London, England, United Kingdom; 9The University of Calgary, Calgary, AB, Canada; 10Association Crohn-RCUH, Brussels Hoofdstedelijk Gewest, Belgium; 11Canada Crohn's and Colitis, Toronto, ON, Canada; 12Confederation of Spanish Associations of Patients with Crohn's Disease and Ulcerative Colitis (ACCU), Madrid, Madrid, Spain; 13Dresden, Sachsen, Germany; 14Crohn’s and Colitis foundation of Israel, Tel Aviv, Tel Aviv, Israel; 15AbbVie, Inc., North Chicago, IL; 16Crohn-Colitis Care Unit (UACC), Hospital Universitari Vall d’Hebrón, Barcelona, Catalonia, Spain
Introduction: Crohn’s disease (CD) and ulcerative colitis (UC) are chronic, debilitating inflammatory bowel diseases (IBD). Medications used to treat IBD pts have distinct characteristics. Research into patient preferences indicates values regarding medical treatment may vary depending on clinical disease phenotype.1-4
We present a descriptive system that includes the most relevant attributes for IBD treatment focusing on the patient perspective.
Methods: A three-step approach was used to develop the descriptive system. First, a literature review was performed and an initial list of attributes was developed and classified within domains and categories. Second, a focus group meeting was conducted with eight patient representatives and nine gastroenterologists. Using feedback elicited from the focus group meeting, the research team constructed an initial draft of the descriptive system, including a subset of domains and attributes. Third, all participants of the focus group meeting participated in two-rounds of structured online interviews. The structured interviews were used to refine the wording used for naming and defining each attribute and the levels of those attributes in the initial descriptive system.
Results: We identified 32 eligible publications and a list of 127 attributes grouped into 7 domains (effectiveness, side-effects, health related quality of life [HRQoL], well-being, available evidence, administration/convenience, and other) was developed. This list was discussed in the focus group meeting and a draft of the descriptive system containing 16 relevant attributes was constructed. The same attributes were defined for UC and CD while taking into consideration that the relative weights for each disease may differ. During the first round of interviews, patients ranked all attributes included in the descriptive system and based on the second round of interviews, the final descriptive system containing a total of 3 domains, 10 attributes, and their corresponding levels was developed (Table).
Discussion: This qualitative research shows which attributes within the domains of efficacy, complications/risk, and HRQoL patients value most when making treatment decisions. We developed a descriptive system that outlines the IBD treatments by means of the 10 most relevant attributes, which should be considered by physicians and nurses when discussing treatment options with a patient. These attributes will be weighted in a future study based on patient preferences.
Citation: Edouard Louis, MD; Juan Ramos, MD; Jesus Cuervo, MD; Uri Kopylov, MD, FEBGH; Manuel Barreiro de Acosta, MD; Sara McCartney, MD; Greg Rosenfeld, MD; Dominik Bettenworth, MD; Ailsa Hart, MD; Kerri Novak, MD; Xavier Donnet, MD; David Easton, MD; Roberto Saldana, MD; Katja Protze, MS; Eyal Tzur, MD; Gabriela Alperovich Lehrer, MD; Francesc Casellas, MD. P0480 - DEFINING MEANINGFUL ATTRIBUTES FOR THE TREATMENT OF IBD FROM PATIENTS’ PERSPECTIVE. Program No. P0480. ACG 2019 Annual Scientific Meeting Abstracts. San Antonio, Texas: American College of Gastroenterology.