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Review
. 2013 Dec;22(130):535-42.
doi: 10.1183/09059180.00005713.

Understanding the impact of pulmonary arterial hypertension on patients' and carers' lives

Loïc Guillevin  1 , Iain Armstrong, Rino Aldrighetti, Luke S Howard, Henrik Ryftenius, Aryeh Fischer, Sandra Lombardi, Sean Studer, Pisana Ferrari
Affiliations
Review

Understanding the impact of pulmonary arterial hypertension on patients' and carers' lives

Loïc Guillevin et al. Eur Respir Rev. 2013 Dec.

Abstract

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.

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Conflict of interest statement

Conflict of interest: Disclosures can be found alongside the online version of this article at err.ersjournals.com

Figures

Figure 1.
Figure 1.
Impact of pulmonary arterial hypertension on work and employment for patients and carers. #: participants were not asked for net or gross income so results assumed to be after tax.
Figure 2.
Figure 2.
Frequency of emotions experienced by a) pulmonary arterial hypertension (PAH) patients and b) their carers.
Figure 3.
Figure 3.
The main information needs for 317 patients with pulmonary arterial hypertension (PAH).
See this image and copyright information in PMC

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