The Pulmonary Hypertension Global Patient Survey: Physical and Psychosocial Impacts on Health-Related Quality of Life.

The Pulmonary Hypertension (PH) Global Patient Survey provides the first truly international description of the symptomatic burden of PH and its treatment on patient's health-related quality of life (HRQoL). From 3329 adult responses across 88 countries, the "invisible" nature of PH is an over-arching theme, with repercussions on socialisation, relationships and employment. Emotional burden is common with 35.6% feeling misunderstood, 33.4% angry or frustrated and 32.0% isolated. A reduced capacity for paid employment, in combination with healthcare/medication costs and difficulty in accessing social and financial support, compound societal exclusion and isolation. Physical limitations are almost universally reported (78.6%) with poor sleep quality (42.3%) the greatest factor in physical well-being. Treatment side-effects are common (46.7%), are greatest with parenteral therapies, but improve with age. Women of child-bearing age bear the brunt of PH physical and psychological burden, compounded by inconsistent messages from specialist services surrounding pregnancy and contraception. Patient-reported outcome measures (PROM) accurately reflect impacts from PH but are underutilised in clinical practice. Many respondents would like to be better able to discuss their emotional symptoms with their PH specialist (but often find a lack of empathy). Psychological support is a highly requested, but frequently unmet, need reinforcing the importance of holistic care models and multiagency working in managing patients with PH.