What outcomes matter to patients with Rheumatoid Arthritis?

That is the question that the Outcome Measures in Rheumatology (OMERACT) Working Group attempted to answer. Specifically, the working group aimed to determine the core set of outcome domains for measuring the effectiveness of shared decision-making (SDM) interventions within clinical trials used to treat rheumatic diseases.  These diseases included osteoarthritis (OA), rheumatoid arthritis (RA), and psoriatic arthritis (PsA).

This is not the first effort in SDM.  For instance, for more general

The International Patient Decision Aid Standards (IPDAS) has identified a set of 8 outcome domains for evaluating the effectiveness of patient decision aids: (1) recognize the decision to be made, (2) know the options, (3) their features, (4) understand that values that affect the decision, (5) clarify values, (6) discuss values with health providers, (7) participate in decision making in preferred ways, and (8) make an informed value-based choice.

However, the authors wanted to tailor the general SDM approach to rheumatic diseases. The authors used an online Delphi Panel methodology as well as a follow-up in person workshop.  About half of Delphi panelists were patients, and just over a third were clinicians, with policymakers, members of industry, consumer groups, and caregivers making up the remainder. The draft set of domains included:


  1. Identifying the decision: The decision to be made is pointed out
  2. Understanding information: The patients are aware of the available options, benefits, and harms
  3. Clarifying patients’ values: The patients feel clear about which features of the options matter their decision the most to them
  4. Deliberating: The patients weigh the good and bad features of the options of options
  5. Making the decision: A decision is made or postponed
  6. Putting the decision into practice: The patients adhere to the chosen option
  7. Effect of decision: The patients are confident and satisfied with the informed value-based choice and process

The top-rated domains in the OMERACT breakout groups were: understanding information (2), clarifying patient values (3), and making the decision (5), with the least necessary domain being deliberating (4). In the plenary session, the top domains were: effect of decision (7), understanding information (2), clarifying patient values (3) with the leas necessary domain being deliberating (4).

There was some disagreement, however, with respect to the degree to which participants felt that each domain was necessary.  Forums with more researchers/clinicians and fewer patients felt that many of these domains were less necessary than forums where patients made up a large share of respondents.

The authors conclude with the following quotation:

“Patients must be involved in their care and treatment decisions not just to ensure patient-centered care, but also so that patients understand and take responsibility for these decisions. SDM is the wave of the future; we can’t run away from it, we have to tackle it together.”


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