RT Journal Article
SR Electronic
T1 Quality of life in patients with chronic thromboembolic pulmonary hypertension
JF European Respiratory Journal
JO Eur Respir J
FD European Respiratory Society
SP 526
OP 537
DO 10.1183/13993003.01626-2015
VO 48
IS 2
A1 Stephen C. Mathai
A1 Hossein-Ardeschir Ghofrani
A1 Eckhard Mayer
A1 Joanna Pepke-Zaba
A1 Sylvia Nikkho
A1 Gérald Simonneau
YR 2016
UL http://erj.ersjournals.com/content/48/2/526.abstract
AB Patients with chronic thromboembolic pulmonary hypertension (CTEPH) experience debilitating symptoms that have a negative impact on their quality of life (QoL) in terms of physical capability, psychological wellbeing and social relationships. The use of QoL measurement tools is important in the assessment of treatment efficacy and in guiding treatment decisions. However, despite the importance of QoL, particularly to the patient, it remains under-reported in clinical studies of CTEPH therapy. CTEPH is unique in pulmonary hypertension in that it is potentially curable by surgery; however, a proportion of patients either have residual PH following surgery or are not operable. Although some patients with CTEPH have been treated off-label with pulmonary arterial hypertension-specific therapies, there have been few randomised controlled trials of these therapies in patients with CTEPH. Moreover, in these trials QoL outcomes are variably assessed, and there is little consistency in the tools used. Here we review the assessment of QoL in patients with CTEPH and the tools that have been used. We also discuss the effect of surgical intervention and medical therapies on QoL. We conclude that further studies of QoL in patients with CTEPH are needed to further validate the optimal QoL tools.HRQoL is rarely measured in CTEPH trials: further studies are needed as well as validation of appropriate HRQoL tools http://ow.ly/ZrkL1