%0 Journal Article %A Pisana Ferrari %A Iain Armstrong %A Rino Aldrighetti %A Luke Howard %A Henrik Ryftenius %A Aryeh Fischer %A Sandra Lombardi %A Sean Studer %A Loïc Guillevin %T Impact of pulmonary arterial hypertension (PAH) on the lives of patients and carers %D 2013 %J European Respiratory Journal %P P2631 %V 42 %N Suppl 57 %X Background: There are limited data on the broader impact of PAH, beyond the physical symptoms, on the lives of patients and carers.Aims & objectives: To better understand how and to what extent PAH affects four main areas of patients’ and carers’ lives: physical, practical, emotional and social, including information needs.Methods: An international, self-reported survey was developed in collaboration with a multidisciplinary steering committee of PAH specialists and patient association representatives. The survey comprised a qualitative phase 1: patient (n = 25) and carer (n = 15) interviews to identify themes, and a quantitative phase 2: online/postal questionnaire completed by patients (n = 326) and carers (n = 129) in five EU countries. Recruitment was mainly via patient associations.Results: 56% of patients and 57% of carers felt that PAH had a very significant impact on their daily lives. Patients frequently described feelings of anger and frustration and emotions commonly associated with depression. Patients also felt isolated, primarily because PAH is not a ‘visible’ disease. PAH also has a marked impact on intimacy and relationships for patients and carers. Employment was affected for patients (85%) and carers (29%), resulting in a reduced household income for many families. Patients and carers described a lack of information from healthcare professionals on the wider aspects of PAH, stating that patient associations are the most important source for this information.Conclusions: PAH has a major global impact on patients and carers. Survey results highlight the need for multidisciplinary and multidimensional care, focusing on QoL and including collaboration with patient associations. %U https://erj.ersjournals.com/content/erj/42/Suppl_57/P2631.full.pdf