Crohn's Disease Patient Experiences and Preferences With Disease Monitoring: An International Qualitative Study.

Background: Strategies incorporating objective disease monitoring in Crohn's disease (CD), beyond clinical symptoms are important to improve patient outcomes. Little evidence exists to explore patient understanding of CD treatment goals, nor preferences and experiences with monitoring options. This qualitative study aimed to explore patient experiences and preferences of CD monitoring to inform monitoring strategies, improve patient engagement, and optimize a patient-centered approach to care.
Methods: This study used a patient-oriented, qualitative descriptive design. Convenience and snowball sampling were used to recruit adult participants diagnosed with CD who had experience with at least 2 types of disease monitoring. Online focus groups were conducted and data were analyzed using thematic analysis.
Results: This international study included 37 participants from Australia, Canada, United Kingdom, and the United States. Overall, participants preferred more noninvasive types of monitoring [eg, intestinal ultrasound (IUS)] but were willing to undergo more invasive monitoring (eg, colonoscopy) if required. To improve disease monitoring, participants wanted increased access to IUS, establishment of a patient-centered interdisciplinary team and access to information and self-testing. Participants identified challenges with communication between patients and providers and stressed the importance of participating in shared decision making and being equal team members in their care.
Conclusions: It is imperative to incorporate patient-driven preferences into how we can best structure monitoring strategies, to ensure equitable access to those preferred modalities and embrace a shared decision-making approach to disease management in CD.
Competing Interests: N.R., S.Z., and S.R. declare no conflict of interest. M.Dolinger is a consultant for Neurologica Corp., a subsidiary of Samsung Electronics Co., Ltd. B.C. has served as a consultant, advisory board member or received grants from AbbVie, Ferring, Janssen, Pfizer, Fresenius Kabi, Falk Pharma, Gilead, Celgene, Sandoz, and Takeda. R.W.: Personal fees from AbbVie, Janssen, Pfizer, Takeda, and Alimentiv outside the submitted work. M.Dubinsky has received consulting fees from AbbVie Inc., Boehringer Ingelheim International GmbH, Bristol-Myers Squibb Company, Celgene Corp, Eli Lilly and Company, F. Hoffman-La Roche Ltd, Genentech Inc., Gilead, Janssen Global Services LLC, Pfizer Inc., Prometheus Biosciences, Takeda Pharmaceutics USA Inc., and UCB SA; contracted research with AbbVie Inc., Janssen Global Services LLC, Pfizer Inc., and Promethesius Biosciences; Ownership with Trellus Health Inc.; licensing fee with Takeda Pharmaceuticals, USA Inc. K.N. reports advisory board fees from AbbVie, Janssen, Pfizer, Ferring, Takeda, Celltrion, and Fresnius Kabi; speaker’s fees from AbbVie, Janssen, Takeda, and Pfizer; and research support from AbbVie and Pfizer.
(© The Author(s) 2023. Published by Oxford University Press on behalf of Crohn's & Colitis Foundation.)