Risk Stratification in Pulmonary Arterial Hypertension: Do Not Forget the Patient Perspective

Pulmonary arterial hypertension (PAH) is a cardiopulmonary condition associated with significant morbidity and mortality despite current advances in therapies. Health-related quality of life (HRQoL) in PAH has been found to be severely impaired at similar levels as those experienced by patients with debilitating illnesses such as interstitial lung disease, spinal cord injury, and treatment-resistant cancer (2). Despite the major impact of PAH on the physical, functional, emotional, and social domains of our patients' lives, physicians and clinical trials have traditionally focused on objective functional endpoints, such as the 6-minute-walk distance. In the sixth World Symposium on Pulmonary Hypertension (Nice 2018), a session devoted to "Patient Perspectives in Pulmonary Hypertension" was championed for the very first time. In this session, disease-specific measures of HRQoL were highlighted as relevant and important endpoints in clinical trials, and these measures should also be integrated into daily clinical practice. Recently, PAH-specific HRQoL measures such as emPHasis-10 and PAH Symptoms and Impact Questionnaire (PAH-SYMPACT) have been developed as easy-to-administer instruments that can be embedded into routine care, registries, and clinical trials.