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Aims: To develop a suite of quality indicators (QIs) for the evaluation of the care and outcomes for adults with pulmonary arterial hypertension (PAH)., Methods and Results: We followed the European Society of Cardiology (ESC) methodology for the development of QIs. This included (i) the identification of key domains of care for the management of PAH, (ii) the proposal of candidate QIs following systematic review of the literature, and (iii) the selection of a set of QIs using a modified Delphi method. The process was undertaken in parallel with the writing of the 2022 ESC/European Respiratory Society (ERS) guidelines for the diagnosis and treatment of pulmonary hypertension and involved the Task Force chairs, experts in PAH, Heart Failure Association (HFA) members and patient representatives. We identified five domains of care for patients with PAH: structural framework, diagnosis and risk stratification, initial treatment, follow-up, and outcomes. In total, 23 main and one secondary QIs for PAH were selected., Conclusion: This document presents the ESC QIs for PAH, describes their development process and offers scientific rationale for their selection. The indicators may be used to quantify and improve adherence to guideline-recommended clinical practice and improve patient outcomes., (© 2023 The Authors. European Journal of Heart Failure published by John Wiley & Sons Ltd on behalf of European Society of Cardiology.)

Patient associations are a valuable resource for managing patients, as they provide educational and emotional support, and can have positive effects on coping, confidence, and outlook.[846] It is recommended that PH centres collaborate with patient associations on initiatives to empower patients and improve the patient experience, addressing issues such as health literacy, digital skills, healthy lifestyles, mental health, and self-management. Mechanical circulatory support has become an established bridging tool to transplantation in patients with irreversible right HF, but is occasionally used as a bridge to recovery in patients with treatable causes and potentially reversible RV failure.[468] No general recommendations can be made regarding the indication for mechanical circulatory support, which needs to be individualized, considering patient factors and local resources.[469],[470] Long-term mechanical support analogous to left ventricular assist devices (LVADs) is not yet available for patients with PH and end-stage right HF. While the age-adjusted mortality of patients with the left heart phenotype seems to be similar to that of patients with classical PAH, patients with a cardiopulmonary phenotype and a low DLCO have a particularly high mortality risk.[77],[78],[161],[450],[451] As patients with cardiopulmonary comorbidities were under-represented in or excluded from PAH trials, no evidence-based treatment recommendations can be made for this patient population. [Extracted from the article]