Abstract
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.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 526-537 |
| Number of pages | 12 |
| Journal | European Respiratory Journal |
| Volume | 48 |
| Issue number | 2 |
| DOIs | |
| State | Published - Aug 1 2016 |
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ASJC Scopus subject areas
- Pulmonary and Respiratory Medicine
Cite this
Quality of life in patients with chronic thromboembolic pulmonary hypertension. / Mathai, Stephen; Ghofrani, Hossein Ardeschir; Mayer, Eckhard; Pepke-Zaba, Joanna; Nikkho, Sylvia; Simonneau, Gérald.
In: European Respiratory Journal, Vol. 48, No. 2, 01.08.2016, p. 526-537.Research output: Contribution to journal › Review article
}
TY - JOUR
T1 - Quality of life in patients with chronic thromboembolic pulmonary hypertension
AU - Mathai, Stephen
AU - Ghofrani, Hossein Ardeschir
AU - Mayer, Eckhard
AU - Pepke-Zaba, Joanna
AU - Nikkho, Sylvia
AU - Simonneau, Gérald
PY - 2016/8/1
Y1 - 2016/8/1
N2 - 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.
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.
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U2 - 10.1183/13993003.01626-2015
DO - 10.1183/13993003.01626-2015
M3 - Review article
VL - 48
SP - 526
EP - 537
JO - European Respiratory Journal, Supplement
JF - European Respiratory Journal, Supplement
SN - 0903-1936
IS - 2
ER -