Support for Living a Meaningful Life with Osteoarthritis: A Patient-to-Patient Research Study

Jean Louise Miller, Sylvia Ruth Teare, Nancy Marlett, Svetlana Shklarov, Deborah Anne Marshall

This study addresses the perspectives of patients with osteoarthritis (OA) about the gap between available support and their needs, with a focus on patient experience and what is important to them. It was a key component of a research initiative to co-develop an evidence-based model for central referral from primary to specialty care for arthritis patients. Patients with OA and trained in engagement methods used adapted qualitative methods to co-design and conduct the study. OA patients (N = 25) participated in a three-step peer-to-peer process: a focus group clarified and explored the topic ("set"), and guided the creation of the interview guide used in the second phase ("collect"). Using a collaborative analysis process, the researchers identified eight concepts that they then brought to a last focus group ("reflect"). Here, participants reviewed the findings, identifying implications for arthritis care in Alberta, Canada. An overarching theme of "supporting us in managing a meaningful life with OA" was underpinned by three components of quality care: (1) right knowledge-specific and detailed knowledge and information; (2) right professional support-ongoing access to health professionals with OA expertise; and (3) right professional relationship-a partnership with health professionals who help them develop and revise personal self-management plans. Peer-to-peer research informed and challenged the research team and stakeholders to consider the need for upstream support for OA patients. Results are helping to transform arthritis care, shifting the health system from an acute episodic model to one that meets the needs of the growing number of patients with chronic diseases.