Impact of pulmonary arterial hypertension (PAH) on the lives of patients and carers

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.