JMIR Publications

ABSTRACT

Background:

Shared decision making (SDM) is becoming an important part of ulcerative colitis (UC) management because of increasing complexity in available treatment choices and their trade-offs. Use of decision aids (DA) may be effective in increasing patients’ participation in their management but their uptake has been limited due to high attrition rates, and lack of a participatory approach to their design and implementation.

Objective:

The primary aim of this study was 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 was 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.

Methods:

myAID, a DA was designed and developed using a participatory approach by a multidisciplinary team of clinicians, patients and non-medical volunteers. A qualitative pilot study to evaluate the DA, involving UC patients facing new treatment decisions and IBD clinicians, was undertaken.

Results:

Eleven UC patients and 15 clinicians provided feedback on myAID. Themes explored included: (1) Acceptability and usability of myAID - (a) myAID was found to be acceptable by the majority of clinicians as a tool to facilitate SDM; (b) Uptake was thought to vary depending on clinicians’ approaches to patient education and practice; (c) Potential to overcome time-restrictions associated with outpatient clinics was identified; (d) Presentation of unbiased information enabling patients to digest information at their own pace was noted; (e) Potential to provoke anxiety among patients with a new diagnosis or mild disease was raised; (2) Perceived role and usefulness of myAID - (a) Discordance was observed between patients who prioritized voicing preferences and clinicians who prioritized treatment adherence; (b) myAID facilitated early discussion of medical versus surgical treatment options; (3) 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; (4) Potential concerns and areas for improvement – Some perceived that use of myAID (a) May precipitate anxiety by increasing decisional conflict and impact the therapeutic relationship between patient and the clinician; and (b) May increase resource requirements.

Conclusions:

These preliminary findings suggest that patients and clinicians consider myAID a feasible and acceptable tool to facilitate SDM for UC management. These pilot data have informed a participatory approach to the design of a CRCT which will evaluate myAID’s clinical efficacy compared with usual care. Clinical Trial: Australian New Zealand Clinical Trial Registry (ACTRN12617001246370).