P0524 Advanced therapy options, choice, access, and treatment empowerment for Inflammatory Bowel Disease (ADVOCATE-IBD): A UK-wide qualitative study
Authors: Hardasani R , Radford S , Peerally M 
Published: January 2025

Background

Inflammatory Bowel Disease (IBD) impairs the quality of life of more than 6.8 million people worldwide1 through symptoms such as severe abdominal pain and faecal urgency. Advanced therapies such as biologics, are increasingly being used in treatment, each holding unique characteristics that influence patient preferences. By understanding these, treatment adherence, long-term health outcomes and shared decision-making can be enhanced2. This study aimed to outline the core domains of patient priorities and values around advanced therapies which influence decision-making.

Methods

Guided by data saturation3, participants were recruited through social media and Crohn’s and Colitis UK using purposive sampling4. Participants undertook a single semi-structured interview that followed a topic guide informed by the results of a Patient and Public Involvement group. Audio-recordings of interviews were transcribed verbatim prior to undergoing reflexive thematic analysis.

Results

A total of 26 UK-based participants were recruited who were predominantly female (73.1%) and aged 31-40 (34.6%). The five themes identified were: “Fitting Treatment and Monitoring into Life”, “The influence of Drug Characteristics”, “Balancing Efficacy and Side-effects”, “Optimizing the Quality of Care”, and “Promoting Shared Decision Making and its Value”.

Conclusion

Patient decision-making and satisfaction with treatment are influenced by multiple factors that evolve in importance over time. For patients, shared decision-making involves having the autonomy to make choices that are disparate from professional recommendations but influenced by open discussions about their care. Shared decision-making also means being actively listened to and their preferences being integrated into their care. Patient decision-making was shaped by the perceived ease of physical drug administration, drug effectiveness at inducing and maintaining remission, and the flexibility of integrating a treatment and its monitoring requirements into their daily lives. Consideration of short- and long-term adverse reactions was generally minimal, as these risks were viewed to be necessary for achieving symptom control. To patients, high-quality care constituted being involved in decisions about their treatment, reliable access to healthcare services in a timely fashion, and comprehensive information about their disease and treatment.

References

1.Jairath V, Feagan BG. Global burden of inflammatory bowel disease. Lancet Gastroenterol Hepatol. 2020;5(1):2–3. Accessed Apr 15, 2024. doi: 10.1016/S2468-1253(19)30358-9.

2.Lofland JH, Johnson PT, Ingham MP, Rosemas SC, White JC, Ellis L. Shared decision-making for biologic treatment of autoimmune disease: Influence on adherence, persistence, satisfaction, and health care costs. Patient Preference and Adherence. 2017;11:947–958. https://www.tandfonline.com/doi/abs/10.2147/PPA.S133222. Accessed Dec 31, 2023. doi: 10.2147/PPA.S133222.

3.Hennink M, Kaiser BN. Sample sizes for saturation in qualitative research: A systematic review of empirical tests. Soc Sci Med. 2022;292:114523. Accessed Nov 5, 2023. doi: 10.1016/j.socscimed.2021.114523.

4.Green J, Thorogood N. Qualitative methods for health research / judith green, nickithorogood. 4th ed. London: SAGE Publications Ltd; 2018:17. http://digital.casalini.it/9781526448804.