RT Journal Article
SR Electronic
T1 Impact of pulmonary arterial hypertension (PAH) on the lives of patients and carers
JF European Respiratory Journal
JO Eur Respir J
FD European Respiratory Society
SP P2631
VO 42
IS Suppl 57
A1 Pisana Ferrari
A1 Iain Armstrong
A1 Rino Aldrighetti
A1 Luke Howard
A1 Henrik Ryftenius
A1 Aryeh Fischer
A1 Sandra Lombardi
A1 Sean Studer
A1 Loïc Guillevin
YR 2013
UL http://erj.ersjournals.com/content/42/Suppl_57/P2631.abstract
AB 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.