Development and Feasibility of a Web-Based Decision Aid for Patients With Ulcerative Colitis: Qualitative Pilot Study

• Published in: Journal of medical Internet research 2021-02, Vol.23 (2), p.e15946-e15946
• Main Authors: Kim, Andrew H, Girgis, Afaf, De Cruz, Peter, Siegel, Corey A, Karimi, Neda, Ruban, Sasha O, Sechi, Alexandra J, Ng, Wa Sang Watson, Andrews, Jane M, Connor, Susan J
• Format: Article
• Language: English
• Subjects: Adolescent; Adult; Anxiety; Attrition; Clinical decision making; Clinical medicine; Clinical research; Clinical trials; Colitis, Ulcerative - therapy; Decision making; Decision Making - physiology; Decision Support Techniques; Disease; Efficacy; Feasibility; Feasibility Studies; Feedback; Female; Group decision making; Health education; Humans; Immunosuppressive therapy; Inflammatory bowel disease; Internet; Internet - standards; Interviews; Male; Medical diagnosis; Medical research; Middle Aged; Multidisciplinary teams; Multimedia; Original Paper; Ostomy; Outpatient clinics; Patient education; Patients; Personal computers; Pilot Projects; Qualitative Research; Surgery; Therapeutic alliances; Treatment preferences; Ulcerative colitis; Uptake; Usefulness; Volunteers; Young Adult
• ISSN: 1438-8871; 1439-4456; 1438-8871
• DOI: 10.2196/15946

Shared decision making (SDM) is becoming an important part of ulcerative colitis (UC) management because of the increasing complexity of available treatment choices and their trade-offs. The use of decision aids (DA) may be effective in increasing patients' participation in UC management but their uptake has been limited due to high attrition rates and lack of a participatory approach to their design and implementation. The primary aim of this study is to explore the perspectives of Australian patients and their clinicians regarding the feasibility and acceptability of myAID, a web-based DA, in informing treatment decisions in UC. The secondary aim is to use the findings of this pilot study to inform the design of a cluster randomized clinical trial (CRCT) to assess the efficacy of the DA compared with usual care. myAID, a DA was designed and developed using a participatory approach by a multidisciplinary team of clinicians, patients, and nonmedical volunteers. A qualitative pilot study to evaluate the DA, involving patients with UC facing new treatment decisions and inflammatory bowel disease clinicians, was undertaken. A total of 11 patients with UC and 15 clinicians provided feedback on myAID. Themes explored included the following: Acceptability and usability of myAID-myAID was found to be acceptable by the majority of clinicians as a tool to facilitate SDM, uptake was thought to vary depending on clinicians' approaches to patient education and practice, potential to overcome time restrictions associated with outpatient clinics was identified, presentation of unbiased information enabling patients to digest information at their own pace was noted, and potential to provoke anxiety among patients with a new diagnosis or mild disease was raised; Perceived role and usefulness of myAID-discordance was observed between patients who prioritized voicing preferences and clinicians who prioritized treatment adherence, and myAID facilitated early discussion of medical versus surgical treatment options; Target population and timing of use-greatest benefit was perceived at the time of initiating or changing treatment and following commencement of immunosuppressive therapy; and Potential concerns and areas for improvement-some perceived that use of myAID may precipitate anxiety by increasing decisional conflict and impact the therapeutic relationship between patient and the clinician and may increase resource requirements. These preliminary findings suggest that pat