A Qualitative Research for Defining Meaningful Attributes for the Treatment of Inflammatory Bowel Disease from the Patient Perspective

• Published in: The patient : patient-centered outcomes research Vol. 13; no. 3; pp. 317 - 325
• Main Authors: Louis, Edouard, Ramos-Goñi, Juan M., Cuervo, Jesus, Kopylov, Uri, Barreiro-de Acosta, Manuel, McCartney, Sara, Rosenfeld, Greg, Bettenworth, Dominik, Hart, Ailsa, Novak, Kerri, Donnet, Xavier, Easton, David, Saldaña, Roberto, Protze, Katja, Tzur, Eyal, Alperovich, Gabriela, Casellas, Francesc
• Format: Journal Article Web Resource
• Language: English
• Published: Cham Springer International Publishing 01.06.2020; Springer Nature B.V; Adis
• Subjects: Clinical decision making; Crohns disease; Crohn’s disease; Decision making; Focus groups; Formative qualitative evidence for health preference and outcomes research; Gastroenterology; Gastroenterology & hepatology; Gastroentérologie & hépatologie; Health Administration; Health Economics; Human health sciences; IBD; Inflammatory bowel disease; Literature reviews; Medicine; Medicine & Public Health; Original; Original Research Article; Patients; Pediatrics; Pharmacoeconomics and Health Outcomes; Preferences; Public Health; Qualitative research; Quality of life; Quality of Life Research; Sciences de la santé humaine; treatment; ulcerative colitis
• ISSN: 1178-1653; 1178-1661
• DOI: 10.1007/s40271-019-00407-5

Introduction Crohn’s disease (CD) and ulcerative colitis (UC) are chronic, inflammatory bowel diseases (IBD). Each class and type of medication available for the treatment of IBD has distinct characteristics and long-term effects that a patient may consider. We present the results of qualitative research that aimed to develop a descriptive framework that outlines the most relevant disease and/or treatment attributes for IBD treatment decisions and focuses on the patient perspective. Methods This research employed a three-step approach: a literature review to identify a broad list of attributes, a focus group meeting including patients and clinicians to assess the relevance of the attributes, and two rounds of voting to name and define each attribute. The literature review was used to develop the initial list of attributes. Although the same attributes were defined for both UC and CD, the relative importance of each attribute to UC or CD was considered. The list of attributes was discussed and evaluated in the focus group meeting, which included eight patient representatives and nine gastroenterologists. Using feedback elicited from the focus group meeting, the research team developed a draft of the descriptive framework that grouped the attributes into domain subsets. All members of the focus group participated in two subsequent rounds of structured, online voting, which was used to refine the wording to name and define each attribute. Additionally, participants ranked all the attributes included in the descriptive framework to suggest which attributes were less relevant and could be omitted. Results Among 574 publications retrieved from the databases and registries, we identified 32 eligible publications, and an initial list of attributes was developed. This list was refined during the focus group meeting, resulting in a draft descriptive framework of attributes within subsets of domains. The final descriptive framework was developed based on structured rounds of online voting to further refine attribute names and definitions. In the final descriptive framework, a total of ten attributes were identified: abdominal pain, other disease-related pain, bowel urgency, fatigue, risk of cancer and serious infections within the next 10 years, risk of mild to moderate complications, aesthetic complications related to treatment, emotional status, sexual life, and social life and relationships. These attributes were distributed across three domains: efficacy, complications and risk, and health-related quality of life. Conclusions Through the identification of the ten most relevant attributes that influence patient decision making for IBD treatments, we developed a descriptive framework that should be considered by physicians when discussing IBD treatment options with their patients. The results of our qualitative research may also be helpful for the development of future IBD clinical studies and quantitative research.