Shared Decision-Making During Pulmonary Arterial Hypertension Therapy Selection: A Patient and Clinician Survey

Selection of therapy for pulmonary arterial hypertension (PAH) requires tradeoffs among disease severity, therapeutic benefit, adverse effects, treatment burden, quality of life, and patient values. Although professional societies endorse shared decision-making (SDM) in this context, empirical data describing SDM in PAH are limited. We conducted a survey to characterize SDM during PAH treatment selection from both patient and clinician perspectives. Using the Ottawa Decision-Making Framework, we administered parallel surveys to patients and clinicians at the Pulmonary Hypertension Association's 2022 International PH Conference (Atlanta, GA). Survey items assessed decisional characteristics including role preference, confidence, self-efficacy, decisional support and the factors considered most important during PAH therapy selection. Surveys were administered electronically and analyses were performed using Python. A total of 89 participants (51 patients, 38 clinicians) completed the survey. Preference for SDM was nearly universal among patients (96%) and clinicians (95%). However, priorities differed significantly. Patients more frequently emphasized quality of life (81% vs. 54%) and efficacy of therapy (42% vs. 29%), whereas clinicians prioritized risk of disease progression (67% vs. 30%; all p < 0.01). Although 92% of clinicians reported eliciting patient values, only 75% of patients perceived that this occurred (p = 0.20). Decisional conflict, defined by a SURE score of less than 4, was reported in 39% of patients. Despite widespread support for SDM, there is a discordance in treatment priorities between patients and clinicians and a high level of decisional conflict among patients suggesting a gap between intent and execution of SDM.