Abstract

Twenty high-volume pulmonary arterial hypertension (PAH) centers, each representing a different country, were invited in 2011 and in 2022 to similar surveys assessing PAH management in Europe (PAH-m). Results were compared to reveal trends and indicate needs in PAH-m. The passing decade did not bring revolutionary changes in operational standards of the centers of reference in respective countries. While 76% of responding centers (vs. 42% in 2011) received formal nominations, 66% were not integrated in national plans for rare diseases.  In over 20% of countries parenteral drugs for PAH can still be prescribed outside referral centers. The most obvious changes were seen in the assessment of Quality of Life (QoL) now a routine in 62% centers (vs. 21% in 2011) mostly with EMPHASIS-PH (56%), but also SF-36 (29%), and other QoL questionnaires. Growing awareness of mental health was reflected by 52% of centers employing psychologist as a member  of the staff,  while only 37% of centers offered such support on request 10 years ago.  Nurses are now entrusted with WHO functional class assessment in 32% (vs 25%) centers. Access to medical therapies remains excellent. Of new interventions pulmonary artery denervation was possible in only two centers, without being reimbursed. Volumes of PAH patients followed by evaluated centers increased only marginally, likely limited by competing locally emerging PAH centres. All new centres including those in Baltic, Balkan and Black Sea regions, will be invited to a PHAROS registry to confront PAH-m with recently defined Quality Indicators in PAH. Serial surveys may help to monitor and improve PAH-m in Europe.