A0340 - Exploring Patients’ Perceptions of Clinical Research in Inflammatory Bowel Disease and Barriers to Participating in Clinical Trials

Sunday, October 23, 2022

5:00 PM – 7:00 PM ET

Location: Crown Ballroom

Has Audio

Presenting Author(s)

Kelly Chatten, MBBS, MRCP

Northern Care Alliance NHS Foundation Trust
Bury, England, United Kingdom

Kelly Chatten, MBBS, MRCP¹, Philip Kalra, MA, MRCP, MD², Peter Bower, PhD³, John McLaughlin, BSc, MB ChB, PhD⁴, Subrata Ghosh, MD⁵, Jimmy Limdi, MBBS, FACG⁶
¹Northern Care Alliance NHS Foundation Trust, Bury, England, United Kingdom; ²Northern Care Alliance NHS Foundation Trust, University of Manchester, Salford, England, United Kingdom; ³Centre for Primary Care and Health Services Research, University of Manchester, Manchester, England, United Kingdom; ⁴University of Manchester, Salford, England, United Kingdom; ⁵College of Medicine and Health, University College, Cork, Cork, Ireland; ⁶Northern Care Alliance NHS Foundation Trust, University of Manchester, Bury, England, United Kingdom

Introduction: The rising incidence and prevalence of inflammatory bowel disease (IBD), its uncertain aetiology and multidimensional and negative effects on people’s lives have underscored the importance and need for research across disciplines. Despite this, participation in research in IBD remains relatively low with virtually no data exploring patients’ perceptions and barriers to participation in research among people living with IBD. This is a preliminary report from an on-going study in the UK.

Methods: Ambulatory patients with IBD attending clinical visits at our centre were invited to complete a questionnaire survey. Information on patient demographics, disease duration and activity were recorded and patient perceptions and barriers to participating in research were explored.

Results: Of 163 patients approached to date, 141 (87%) consented to complete the questionnaire. Of 22 patients who declined, 86% were male. Among 141 participants, 82 (58%) were female, age between 18 to >80. Seventy-one patients had Crohn’s disease (CD,50%), 59 ulcerative colitis (UC) (42%), 5 (4%) had IBD-unspecified and 6 (4%) were unsure of their diagnosis. 102 (72%) patients were on biologics. The mean Harvey Bradshaw Index (HBI) was 4 (CD) and partial Mayo score 2 (UC).

129/141 (91%) said they would participate in research but only 57% stated they would be interested in drug trials. Reasons cited for participation were to advance medical knowledge (91/129, 71%) followed by the possibility of effective treatment (31/129, 24%).

Of those that stated they were not interested in research at all, 8/12 (67%) were male. Their most important reason for not wanting to participate was time constraints followed by concern for health. Although not compulsory to answer if patients were interested in research, a further 43/129 (36%) answered what disinterests them. In the whole cohort 55/141 (39%) it was secondary to concern for their own health (44%) followed by time (24%). Only a small number felt that the possibility of receiving a placebo (5/55, 9%) or having more tests (9/55 16%) would detract them from research.

The factors that made patients more likely to participate in research were direct conversation with their doctor (88/141, 62%) and if they were more “unwell” (50/141, 35%).

Discussion: Most patients are interested in participating in IBD research although fewer were interested in drug trials. The study is recruiting well currently and more data will be available for analysis and reporting in the coming months.

Figure: Figure 1 Graph showing all reasons for patients’ interest or lack of interest in research
Part A All reasons patients are interested in participating in research
Part B All reasons patients are not interested in participating in research

Disclosures:

Kelly Chatten: Galapagos – Speakers Bureau.

Philip Kalra indicated no relevant financial relationships.

Peter Bower indicated no relevant financial relationships.

John McLaughlin indicated no relevant financial relationships.

Subrata Ghosh: AbbVie – Advisory Committee/Board Member, steering committee, Speakers Bureau. Boehringer Ingelheim – steering committee. Bristol Myers Squibb – steering committee. Celgene – steering committee. Celltrion – Speakers Bureau. Eli Lilly – Advisory Committee/Board Member. Ferring – Speakers Bureau. Gilead – Advisory Committee/Board Member, steering committee. Janssen – Advisory Committee/Board Member, steering committee, Speakers Bureau. Pfizer – Advisory Committee/Board Member, Speakers Bureau. Roche – Advisory Committee/Board Member. Takeda – Advisory Committee/Board Member, Speakers Bureau.

Jimmy Limdi: ABBVIE – Advisory Committee/Board Member, Speakers Bureau. Arena – Advisory Committee/Board Member. Bristol Myers Squibb – Advisory Committee/Board Member. Ferring – Speakers Bureau. Galapagos – Advisory Committee/Board Member, Grant/Research Support, Speakers Bureau. Janssen – Advisory Committee/Board Member, Speakers Bureau. Pfizer – Advisor or Review Panel Member, Speakers Bureau. Takeda – Speakers Bureau.

Kelly Chatten, MBBS, MRCP¹, Philip Kalra, MA, MRCP, MD², Peter Bower, PhD³, John McLaughlin, BSc, MB ChB, PhD⁴, Subrata Ghosh, MD⁵, Jimmy Limdi, MBBS, FACG⁶. A0340 - Exploring Patients’ Perceptions of Clinical Research in Inflammatory Bowel Disease and Barriers to Participating in Clinical Trials, ACG 2022 Annual Scientific Meeting Abstracts. Charlotte, NC: American College of Gastroenterology.