From Health-Related Quality of Life (HRQoL) of Patients with Pulmonary Hypertension to Patient Experience with the Care Received: Should We Be More Aware of Current Patient Needs?

In patients with long-standing PAH and CTEPH with good disease control, functional limitations greatly impact HRQoL while symptoms and generic QoL were less affected. Healthcare received was perceived as good; however, use of information and communication technologies, patient associations and promotion of self-management should improve for enhanced patient experience.