Development of an Online Patient Decision Aid and Culturally Conscious Toolkit for Inflammatory Bowel Disease
Author(s)
Katie L. Deering, PharmD1, Aarti A. Patel, MBA, PharmD2, Margaret Yung, PharmD3, Alicia C. Shillington, PhD, MPH3, Cedric Pulliam, PhD4, Shamita B. Shah, MD5;
1EPI-Q, Inc., Vice President, Chicago, IL, USA, 2J&J Innovative Medicines, Titusville, NJ, USA, 3EPI-Q, Inc, Chicago, IL, USA, 4Patient Representative, Atlanta, GA, USA, 5Ochsner Health, New Orleans, LA, USA
1EPI-Q, Inc., Vice President, Chicago, IL, USA, 2J&J Innovative Medicines, Titusville, NJ, USA, 3EPI-Q, Inc, Chicago, IL, USA, 4Patient Representative, Atlanta, GA, USA, 5Ochsner Health, New Orleans, LA, USA
OBJECTIVES: Shared decision-making (SDM) integrates patients’ preferences and values with clinicians’ expertise to guide treatment decisions. Given the complexity of treatment options for inflammatory bowel disease (IBD) and the need to address health equity gaps, this initiative aimed to develop two complementary resources: a patient decision aid (PDA) to help patients and clinicians evaluate advanced therapy options and a Culturally Conscious Toolkit (CCT) to equip care teams with resources to deliver culturally sensitive and inclusive care.
METHODS: The PDA was developed using the International Patient Decision Aid Standards (IPDAS), incorporating: 1) guidance from a multidisciplinary steering committee (two physicians, a decision-making expert, and a person living with IBD) 2) decisional needs assessment through literature review and focus groups with patients and practicing physicians to identify gaps in information and decision support; 3) synthesis of clinical evidence on advanced therapy options; 4) iterative drafting with feedback from patients focus groups, and the steering committee; 5) focus groups testing of the prototype to evaluate usability and utility. In parallel, the CCT was designed to address gaps in culturally sensitive care, following a similar development process, and included frameworks, actionable strategies, and communication techniques to support equitable and inclusive care.
RESULTS: The PDA is an interactive website designed for a 15-20-minute session, providing information on IBD, advanced therapies, and a values clarification exercise. Patients can take notes and share outputs with their clinicians to facilitate SDM. The CCT complements the PDA by providing care teams with practical resources to engage diverse patients, address cultural barriers ,and promote inclusive care delivery.
CONCLUSIONS: Together, the PDA and CCT aim to enhance SDM and address health equity gaps, empowering patients and care teams to make informed, collaborative decisions. Future research will involve a field test within a large IBD Clinic to gather real-world feedback.
METHODS: The PDA was developed using the International Patient Decision Aid Standards (IPDAS), incorporating: 1) guidance from a multidisciplinary steering committee (two physicians, a decision-making expert, and a person living with IBD) 2) decisional needs assessment through literature review and focus groups with patients and practicing physicians to identify gaps in information and decision support; 3) synthesis of clinical evidence on advanced therapy options; 4) iterative drafting with feedback from patients focus groups, and the steering committee; 5) focus groups testing of the prototype to evaluate usability and utility. In parallel, the CCT was designed to address gaps in culturally sensitive care, following a similar development process, and included frameworks, actionable strategies, and communication techniques to support equitable and inclusive care.
RESULTS: The PDA is an interactive website designed for a 15-20-minute session, providing information on IBD, advanced therapies, and a values clarification exercise. Patients can take notes and share outputs with their clinicians to facilitate SDM. The CCT complements the PDA by providing care teams with practical resources to engage diverse patients, address cultural barriers ,and promote inclusive care delivery.
CONCLUSIONS: Together, the PDA and CCT aim to enhance SDM and address health equity gaps, empowering patients and care teams to make informed, collaborative decisions. Future research will involve a field test within a large IBD Clinic to gather real-world feedback.
Conference/Value in Health Info
2025-05, ISPOR 2025, Montréal, Quebec, CA
Value in Health, Volume 28, Issue S1
Code
HSD91
Topic
Health Service Delivery & Process of Care
Disease
No Additional Disease & Conditions/Specialized Treatment Areas, SDC: Gastrointestinal Disorders