Journal of Comparative Effectiveness Research | Methodology

Treatment goals for rheumatoid arthritis: patient engagement and goal collection

Summary

Aim: We developed the Patient-Engaged Health Technology Assessment strategy for survey-based goal collection from patients to yield patient-important outcomes suitable for use in multi-criteria decision analysis. Methods: Rheumatoid arthritis patients were recruited from online patient networks for proof-of-concept testing of goal collection and prioritization using a survey. A Project Steering Committee and Expert Panel rated the feasibility of scaling to larger samples. Results: Survey respondents (n = 47) completed the goal collection exercise. Finding effective treatments was rated by respondents as the most important goal, and reducing stiffness was rated as the least important. Feedback from our steering committee and expert panel support the approach’s feasibility for goal identification and ranking. Conclusion: Goals relevant for treatment evaluation can be identified and rated for importance by patients to permit wide input from patients with lived experience of disease.

Plain language summary

Methods for collecting patient input on valuation of healthcare interventions are in wide use, but the extent to which existing methods capture the range of outcomes important to patients is not known. There is not yet a standard approach to identify and quantify patient-important outcomes for use in deliberative decision-making processes. We worked with a steering committee and surveyed patients with rheumatoid arthritis to test a new method for engaging patients in healthcare valuation using patient goals. We found this method to be feasible for wider use. Deliberative methods of valuation can include outcomes based on goals collected directly from patients. Patient input through goal framing provides a way for patients to be actively involved in valuation methods.
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