Our team collaborates with researchers across Canada and internationally to develop high-quality, evidence-based and relevant research. Our main interests are : shared decision making, evidence-based practice and patient-oriented research.
Shared decision making
Shared decision making (SDM) is commonly considered to be “the process of clinician and patient jointly participating in a health decision after discussing the options, the benefits and harms, and considering the patient’s values, preferences, and circumstances” (Hoffmann et al, 2014). Shared decision making has been described as the crux of patient-centered care (Weston, 2001). It is a process that allows patients to fully participate in decision-making and helps ensure that patients receive all appropriate information and discuss their values and preferences with their clinicians, which can lead to informed decisions that are consistent with their values. A few of our SDM projects are highlighted below.
The Juvenile Idiopathic Arthritis Option Map : a web-based patient decision aid for pain management in JIA
The JIA Option Map is an interactive web-based patient decision aid which provides personalized information on a wide range of approaches to help manage JIA pain and to facilitate a discussion among young people with JIA, their families and health care professionals. The web application was developed following the International Patient Decision Aids Standards (IPDAS) (Elwyn, 2006; Coulter, 2012) and using an iterative process comprised of a series of interviews, consensus meetings and surveys (Toupin April, 2020). Young people and parents who used it in an interview felt that most elements were clear, and that it gave them the right amount of information and had the right length. They also mentioned that it would help them: (1) recognize that a decision needs to be made to manage pain; (2) learn about treatments; and (3) think about the benefits and disadvantages of treatment options, and about what matters to them. Most participants also revealed they learned about new treatments and their scientific evidence. All young people said it would help them to be more involved in decision-making and prepare them to talk with their health care team (manuscript in preparation). We will soon be testing the JIA Option Map together with an online discussion with a health care provider, among teenagers, young adults and parents for a three-month period.
A decisional needs assessment among adults with type-2 diabetes (T2DM) in China and development of a new patient decision aid
Patients with T2DM in whom metformin monotherapy is insufficient to achieve good glycemic control face challenges to choose among treatment options when considering treatment intensification. We developed a patient decision aid prototype for these patients to support them to make an informed decision. First, we conducted a patient decisional needs assessment at Fu Wai Hospital, China to gain insight into the values and preferences of patients in China. Second, we conducted a systematic review and network meta-analysis of the comparative efficacy and safety of eight antihyperglycemic classes combined with metformin in treating patients with T2DM. Third, we combined results of the first two phases to develop a patient decision aid prototype for patients with T2DM considering the addition of an agent after metformin monotherapy failure in achieving sufficient glucose control.
Development of an OMERACT (Outcome Measure in Rheumatology) core domain set for trials of shared decision making interventions in rheumatology.
OMERACT is an international research effort to develop outcome measures for use in rheumatology research. As co-chair of the OMERACT working group on shared decision making (SDM), I have worked with various stakeholders including patients and health care professionals to agree on the core outcome domains to assess trials of SDM interventions in rheumatology.
Dr. Karine Toupin April started working with patients and families as a trainee with the Canadian Arthritis Network. I continue to work in partnership with patient partners and many are co-authors on academic publications and are key partners throughout the development and implementation of our projects.
Decision Aids for Patient Partner Engagement with Clinical Trials
We were part of a research project to develop, translate and evaluate two innovative digital decision aids (patient partner and investigator) designed to improve sex/gender uptake and patient engagement partnerships in clinical trials (PEP-CT). Patient partners have been actively engaged throughout this project. These decision aids were guided by the International Patient Decision Aid Standards, User-Centered Design and the Ottawa Decision-Support Framework. The web-based patient and investigator decision aids are the first to provide information technology to deliver sex/gender, POR knowledge, and decision support beyond the traditional aids used for health screening and/or treatment decisions.
Our research team developed and validated the OA Go Away (OGA) which is a self-management behavioural intervention based on the self-regulation theory that was developed by osteoarthritis (OA) experts and people with OA. It is paper-based and includes: a monthly personalized self-report symptom tracker/journal (to monitor how OA affects daily function, pain, stiffness, swelling, sleep, mood, energy and weight as well as how patients are managing their condition with exercise/fitness, medications and other treatments); a monthly ‘goals and action plan’ (to set realistic personal functional goals and exercise/ PA plans); a weekly ‘exercise log’ (to keep track of daily PA, divided into aerobic/strengthening/range of motion (ROM) and balance exercise categories); and an optional ‘exercise routine log’ to track specific prescribed exercises. The OGA focuses on the individuals’ needs, with initial guidance and reinforcement by a physiotherapist, eventually transitioning to independent long term OA self-management.
We conducted a pilot RCT, with 37 participants (17 in the OGA group and 20 in the control group), which justifies a formal RCT of the OGA and shows promising results concerning its acceptability, especially if available in an electronic format.
We developed clinical practice guidelines in adult and pediatric rheumatology and rehabilitation practice. For example, we were involved in the development of the Ottawa Panel guidelines with Dr. Lucie Brosseau and the 2012 American College of Rheumatology recommendations for osteoarthritis management.
Development of outcome measures
We developed instruments to assess the use of and perceptions of treatments used by youth with juvenile idiopathic arthritis (JIA). We developed and performed the preliminary validation of the first questionnaire to assess the use and perceptions of complementary health approaches in pediatrics, (WHAT-“Which Health Approaches and Treatments are you using?”). The WHAT is now being validated among youth with cancer. The second part of the project involved contributing to the development and validation of the child and parent-proxy report questionnaires assessing adherence to prescribed treatments and related beliefs in JIA (i.e., Child and Parent Adherence Report Questionnaires).