Pulmonary arterial hypertension: the burden of disease and impact on quality of life.
File(s)
Published version
Author(s)
Delcroix, M
Howard, L
Type
Journal Article
Abstract
Pulmonary arterial hypertension (PAH) is a debilitating disease that pervades all aspects of a patient's daily life. It is also increasingly acknowledged that the burden of PAH extends to older patients and carers. Until recently, the adverse effect of disease symptoms on the physical, emotional and social factors governing patient health-related quality of life (HRQoL) remained largely unrecognised. With a shift in therapeutic objectives to longer term improvements and HRQoL benefits, clinical trials now frequently include HRQoL measures as study end-points. Most HRQoL instruments used in patients with PAH are generic or non-disease-specific questionnaires and therefore may not accurately capture PAH disease burden. New PAH-specific HRQoL instruments currently undergoing validation include emPHasis-10 and Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT; Actelion Pharmaceuticals Ltd, Allschwil, Switzerland). Using various HRQoL measures, pharmacological therapies have been shown to improve HRQoL in patients with PAH. Patients also derive HRQoL benefits from nonpharmacological strategies, which include the emotional support provided by multidisciplinary care and support groups that is fundamental to patient wellbeing. Looking to the future, validated PAH-specific HRQoL instruments together with dedicated guidelines and procedures are essential to support the translation of HRQoL scores to the clinic, thus enabling a holistic treatment approach to the management of patients with PAH.
Date Issued
2015-12-01
Date Acceptance
2015-09-23
Citation
European Respiratory Review, 2015, 24 (138), pp.621-629
ISSN
1600-0617
Publisher
European Respiratory Society
Start Page
621
End Page
629
Journal / Book Title
European Respiratory Review
Volume
24
Issue
138
Copyright Statement
Copyright ©ERS 2015. ERR articles are open access and distributed under the terms of the Creative Commons Attribution Non-Commercial Licence 4.0. (https://creativecommons.org/licenses/by-nc/4.0/)
License URL
Identifier
PII: 24/138/621
Publication Status
Published