Gregory D. Salinas, PhD1, Emily D. Belcher, BS1, Susan E. Cazzetta, PharmD2, Pradeep P. Nazarey, MD3, Sylvie Stacy, MD, MPH1 1CE Outcomes, LLC, Birmingham, AL; 2Takeda, Lexington, MA; 3Takeda-USBU, Lexington, MA
Introduction: Crohn’s-related perianal fistulas (CPF) are major contributors to lowered quality of life for patients with Crohn’s disease. This study aimed to identify patient/caregiver (PT/CG) perspectives and needs in CPF management.
Methods: An online survey was distributed to CPF PT/CG from Oct 2020 through Jan 2021. Analysis used a combination of quantitative methods with qualitative open-ended coding.
Results: Of 150 responses, 96 were from patients and 54 by parent or family caregivers. While the majority were diagnosed by GIs, other health care professionals (HCPs) also made diagnoses. Primary care physicians (PCPs) remained extremely or very involved with CPF management for 29% of patients and 39% of caregivers.
Respondents stated CPF increases stress (67%), disrupts their job/career (66%), increases their financial burden (66%), and creates an increased emotional burden (65%) on patients and their families. PT/CG are more comfortable discussing CPF with their HCPs (82%) than their friends or family members (61%), and 69% stated they would benefit from more information on managing day-to-day CPF symptoms. PT/CG were extremely or very concerned with surgical complications (60%) and medication side effects (50%). PT/CG indicated a need for more information on current and new/emerging medical/surgical treatments.
The top two PT/CG goals of CPF treatment were decreasing pain and healing the fistula, which differed from GIs, where healing was ranked 1st and resolving symptoms ranked 4th. PT/CG preferred to make the final decision on treatment after considering their doctor’s opinion (43%/39%), while 28%/30% prefer sharing decisions with their HCP.
Barriers to optimal CPF care include lack of effective treatments (69%), lack of access to specialists (68%), costs of care (59%), physical/emotional stress (58%), inadequate community social services (53%), and limited information to make medical/surgical decisions (44%). Top sources of very valuable CPF information were GIs (51%), surgeons (33%), patient advocacy organizations (27%), pharmacists (21%), and family members/caregivers (21%).
Discussion: CPF places physical, emotional, and financial burdens on patients and caregivers. Both patients and caregivers prefer to be involved in management decisions. Barriers to care were common, and patient/caregivers identified a need for more information on CPF.
Gregory Salinas indicated no relevant financial relationships.
Emily Belcher indicated no relevant financial relationships.
Susan Cazzetta: Takeda Pharmaceuticals USA, Inc – Employee, Stockholder/Ownership Interest (excluding diversified mutual funds).
Sylvie Stacy indicated no relevant financial relationships.
Gregory D. Salinas, PhD1, Emily D. Belcher, BS1, Susan E. Cazzetta, PharmD2, Pradeep P. Nazarey, MD3, Sylvie Stacy, MD, MPH1. P1601 - Patient and Caregiver Perspectives on Management of Crohn’s-Related Perianal Fistulas: Results of a U.S. National Survey, ACG 2021 Annual Scientific Meeting Abstracts. Las Vegas, Nevada: American College of Gastroenterology.