Use of an Internet-based Decision Aid (myAID) for Ulcerative Colitis Patients to Improve Quality of Life, Empowerment, Decision Making and Disease Control

The overall aim of the project is to improve, through the implementation of a decision aid (myAID), quality of life, empowerment, quality of decision making, and disease control of patients receiving treatment for ulcerative colitis (UC). myAID is an internet-based multimedia decision aid (Emmi Solutions, Chicago) designed to support shared decision making for treatment choices in UC management. Its content was determined following a survey of 460 UC patients from USA and Australia which confirmed that most patients with UC want better understanding about UC and its treatments, and wish to participate in shared decision making with their gastroenterologist when making treatment decisions. Content: Organised into small chapters that can be viewed repeatedly as necessary, myAID aims to enhance the viewer's understanding of UC including its risks and potential complications, goals of treatment as well as benefits and risks of a range of surgical and medical treatment options available. Interactivity: myAID can be accessed using any computer by a unique link assigned to the viewer during the study. Study participants will be asked to view myAID in their own time and space. myAID has several interactive components that prompt patients to answer questions about their current symptoms and concerns, allows them to return and skip to a specific chapter of their interest after viewing the entire tool at least once, and to take virtual notes and print these as required to discuss with their doctor. A summary of all the information provided in myAID can also be printed once all the contents have been viewed. The intervention will be administered in a two arm, prospective cluster randomised controlled trial involving 22 sites across New South Wales (NSW), South Australia (SA), Victoria (Vic), Queensland (QLD) and Western Australia (WA). Half ie 11 of the sites or clusters will be allocated to the intervention arm where myAID will be made accessible to patients routinely throughout the 12-month study period in addition to usual care. Consenting patients will be asked to complete a baseline online questionnaire and test for faecal calprotectin before they view myAID and return to their consultant for further discussion about their management. All participants in the intervention arm of the study will be required to view myAID at least once, as they will not be able to progress through the study without viewing it (which will constitute a minimum requirement of the baseline assessment for them). From thereon, they will be encouraged to view myAID as often as necessary to help with their decision making during the entire study period. An online questionnaire will be completed after the initial viewing of myAID to assess the patient’s perception of the usefulness and acceptability of myAID, and whether the patient used any other information material than myAID. Additional online questionnaires and FC samples will be collected at 2 months, 6 months, and 12 months, all of which can be done from the patient’s home. The online questionnaires will collect patient’s demographic and basic clinical information eg hospital admissions, and also ask the patient to complete the following measures: Assessment of Quality of Life-8D, Health Literacy Questionnaire, Health Education Impact Questionnaire, Decisional Conflict Scale, Trust in Physician Scale, Hospital Anxiety and Depression Scale – Anxiety, Medication Adherence Visual Analogue Scale, Simple Clinical Colitis Activity Index, and Work Productivity and Activity Index.