RT Journal Article
SR Electronic
T1 Understanding the impact of pulmonary arterial hypertension on patients' and carers' lives
JF European Respiratory Review
JO EUROPEAN RESPIRATORY REVIEW
FD European Respiratory Society
SP 535
OP 542
DO 10.1183/09059180.00005713
VO 22
IS 130
A1 Guillevin, Loïc
A1 Armstrong, Iain
A1 Aldrighetti, Rino
A1 Howard, Luke S.
A1 Ryftenius, Henrik
A1 Fischer, Aryeh
A1 Lombardi, Sandra
A1 Studer, Sean
A1 Ferrari, Pisana
YR 2013
UL http://err.ersjournals.com/content/22/130/535.abstract
AB Pulmonary arterial hypertension (PAH) is a rare, debilitating and rapidly progressive disease. Although there have been important medical advances in PAH management, the search for a cure continues. Despite an increased understanding of the disease, data on the wider effect of PAH on patients and carers, beyond the clinical symptoms, are still limited. In order to explore this, a large-scale international survey investigated four key areas affected by PAH (physical and practical, emotional, social, and information needs) and provides new insight into patients’ and carers’ experiences of living with the disease. The results from the survey highlight not only the limited ability of patients to carry out everyday tasks, but also the financial impact and social isolation experienced by both patients and carers. The study confirmed that a decline in a patient’s World Health Organization functional class, which indicates an increase in clinical severity of the disease, is associated with greater limitations. Results from the survey demonstrate the need for multidisciplinary PAH management and a comprehensive standard of care to assess and improve all aspects of well-being for both patients and carers. In addition, they underline the need for updated PAH guidelines that address these needs.