Integrating Shared Decision Making Into Rheumatoid Arthritis Care: A Focus on Indigenous Patients

 

 

Scientific Study Title:

Implementation and Evaluation of Shared Decision-Making Strategies with Indigenous Peoples for Rheumatoid Arthritis Treatment

 

Study Start Date:

April 2024

 

End Date:

March 2026

 

Why Do This Research?

Treatment of rheumatoid arthritis is complex, with multiple medication options available. How each patient approaches their choice can vary.

  • If they prefer to delegate the choice to their healthcare provider;
  • If they have a preference to choose the strategy that will give them the best benefit, or one that minimizes the risk of side effects;
  • Whether how the medication is taken, as either pills or injections, influences their decision.

Shared Decision Making is a proven method to help patients and health professionals work together to determine health care decisions. Many strategies are used, including decision aids (visuals and written or web content that outline the possibilities) and decision coaching (where a peer helps talk through the choices and pros and cons of each). Shared Decision Making has been proven to increase patient satisfaction with their treatment, allowing them to feel more in control and improve their relationships with their health care provider.

Shared Decision Making for Indigenous patients with rheumatoid arthritis involves the consideration of additional population-specific content and cultural factors, as well as cost coverage information applicable to them. As Shared Decision Making is focused on aligning patient knowledge and preferences for treatment, it may be the best way to support arthritis care for Indigenous patients in harmony with their beliefs. However, the SDM resources have to be adapted for their use, and several Shared Decision making strategies may be combined to arrive at a decision.

Primary Research Objectives:

  1. We will adapt existing decision aids for use in Indigenous patient settings, and develop new decision aids that cover a wider range of treatment decision points;
  2. We will put Shared Decision Making strategies into clinical practice and evaluate their effectiveness and patient satisfaction.

 

What Will Be Done?

Objective 1: Adapt rheumatoid arthritis therapy decision aids for use in Indigenous patient settings, including:

  • Paying attention to the physical appearance (layout and section transitions) and language used in the decision aid;
  • Adding colour and graphics to avoid the appearance of government forms;
  • Adding content specific to Indigenous patient populations and cultural health and wellness approaches;
  • Seeking feedback on drafts of the new resources.

We will also create new decision aids for rheumatoid arthritis care, including the choice of initial biologic therapy and the choice of biologic therapy after failure of TNF inhibition. As these new decision aids become available, we will undertake a similar process to adapt them for use in Indigenous populations and get patient feedback before making them available for clinical use.

Objective 2: Implementing and Evaluating Shared Decision Making strategies in Indigenous patient rheumatoid arthritis care.

Participants will be recruited to use two possible Shared Decision Making strategies:

  • Adapted decision aids, either during their appointment or in discussion with a decision coach
  • Decision coaching: Decision coaches are frequently health professionals but are neutral in the decision being made. They support patients in the decision making process by providing knowledge, clarifying values, building patient skills in decision making, and addressing barriers to putting their decisions into practice.

We will then evaluate the process and logistics of these two approaches as well as patient satisfaction with Shared Decision Making.

 

Who Is Involved?

We will be recruiting Indigenous people with rheumatoid arthritis from specific clinics in First Nations and urban Indigenous communities in southern Alberta. Research agreements with these communities are in place to address data ownership, control, access and possession.

 

How are Equity, Diversity and Inclusion Addressed or Taken Into Consideration?

Indigenous patients have the highest burden of rheumatoid arthritis in the Canadian population, with a two-to-three-fold increased disease prevalence. They may experience more severe disease risk factors, reduced response to evidence-based therapy, and experience racism in the healthcare system. Indigenous patients’ decision-making for rheumatoid arthritis treatment involves the consideration of additional population-specific content and cultural factors, as well as the cost coverage information applicable to them.

 

Research Team

Principal Investigator:

Cheryl Barnabe, MD, MSc, FRCPC, Senior Scientist, Arthritis Research Canada (University of Calgary)

 

Co-Investigator(s):

Glen Hazlewood, MD, PhD, FRCPC, Research Scientist, Arthritis Research Canada (University of Calgary)
Claire Barber, MD, PhD, FRCPC, Research Scientist, Arthritis Research Canada (University of Calgary)
Dianne Mosher, MD (University of Calgary)
Karine Toupin-April, MD (University of Ottawa)
Chance McDougall, MD (University of Calgary)

 

Collaborators:

Siksika Nation, Elbow River Healing Lodge, and Division of Rheumatology, Richmond Road Diagnostic and Treatment Centre (Alberta Health Services)

 

Research Staff:

Tessa Linkert (Kleissen)

 

Funding Agency:

University of Calgary Cumming School of Medicine Clinical Research Fund (CRF) Grant