Advanced therapy options, choice, access, and treatment empowerment for inflammatory bowel disease (ADVOCATE-IBD): a UK-wide semi-structured interview study exploring patient preferences around advanced therapy decisions in inflammatory bowel disease.

BACKGROUND

Advanced therapies, including biologics and small molecule drugs, are increasingly used in the management of inflammatory bowel disease (IBD), but their diverse characteristics can influence patient treatment choices and experiences. Understanding patient priorities and practicing shared decision-making can optimize treatment satisfaction and adherence. This qualitative study explored patient experiences on advanced therapies to identify factors influencing treatment decisions aiming to develop a practical tool supporting shared decision-making when initiating or switching treatments.

METHOD: Using purposive sampling, participants on advanced therapies for moderate-to-severe IBD were recruited through Crohn's & Colitis UK and social media until achieving data saturation. Semi-structured interviews were conducted using a topic guide developed from literature review and patient representative input. Audio recordings were transcribed and analyzed using reflexive thematic analysis.

RESULTS

Of 26 participants, most were female (73.1%) and using Vedolizumab (30.7%) or Infliximab (26.9%). The age group 31-40 (34.6%) was most commonly represented, and 46.2% had ulcerative colitis. All participants were in self-reported clinical remission. Four overarching themes were identified: embedding treatment realities into daily routines; negotiating the tension between therapeutic benefits and potential risks; navigating formal and informal support structures; and asserting agency in treatment decisions.

CONCLUSION

Patient decision-making around advanced therapies for the management of moderate-to-severe IBD is influenced by treatment practicality and life impact, balancing efficacy and risk management, access to healthcare support networks, and involvement in care decisions. The Advanced therapy options, choice, access, and treatment empowerment for IBD tool, developed from these findings, provides clinicians with a framework to understanding individual patient priorities and values, supporting meaningful shared decision-making.