Expert consensus on patient engagement strategies for improving patient activation and shared decision making in...

Patient engagement leads to improved disease outcomes; however, an unmet need exists for understanding and disseminating the benefits of patient engagement and shared decision making (SDM) in pulmonary arterial hypertension (PAH).

To develop an expert consensus on strategies for patient engagement and SDM in PAH.

United States (US)-based physicians ( n = 5), Advanced Practice Providers ( n = 5), and Registered Nurses (RNs; n = 3) who are responsible for managing patients with PAH were recruited to a double-blinded modified-Delphi panel (two survey rounds and a virtual consensus meeting). Consensus was defined as ≥80% of panelists rating their agreement or disagreement using a 9-point Likert scale.

Engaged patients actively participate in SDM by asking questions, providing feedback, and following up routinely, which in turn leads to improved disease management in PAH. Factors that motivate engagement include provider encouragement and social support. Factors that discourage engagement include frustration due to symptom severity and medication side effects, poor health literacy, and financial burden. Communicating the importance of risk assessments and resources to address poor health literacy are areas that require improvement. Creating an action plan that involves patients and family members and educating and encouraging patients to research and understand PAH are essential components of SDM.

Consensus was reached on the importance of SDM and strategies to empower patients to be more engaged in their PAH management.

The identified areas of improvement may motivate greater involvement of patients, and their caregivers, in the management of PAH to advocate for their goals and preferences.