Functional and Quality of Life Improvements in Treated Patients with Chronic Thromboembolic Pulmonary Hypertension

Thakrar, Mitesh V.; Hall, AG; Crackett, Rachel; Day, Margaret; Gowan, G. Mac; Lordan, Jim; Fisher, Andrew J.; Treacey, C; Pepke‐Zaba, Joanna; Corris, Paul A.

doi:10.1016/j.healun.2013.01.868

Cited by 4 publications

(6 citation statements)

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“…Previous studies have reported improved PROs following PEA however, they have been limited by reliance on generic PROs, small sample sizes or absence of MCIDs for the PRO tool [18,[33][34][35]. An advantage of the CAMPHOR score over generic and PH-specific PROs is its development and validation in CTEPH with multiple domains that are specific to CTPEH patients.…”

Section: Discussionmentioning

confidence: 99%

CAMPHOR score: patient-reported outcomes are improved by pulmonary endarterectomy in chronic thromboembolic pulmonary hypertension

et al. 2020

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BackgroundPulmonary endarterectomy (PEA) is the recommended treatment for eligible patients with chronic thromboembolic pulmonary hypertension (CTEPH). The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) score is an internationally-validated patient-reported outcome (PRO) measure for CTEPH. It assesses 3 domains: activity, quality of life (QoL) and symptoms. We assessed PROs in patients with CTEPH undergoing PEA.MethodsThis retrospective observational study of consecutive CTEPH patients undergoing PEA at the UK national PEA centre between 2006 and 2017 assessed change in CAMPHOR score from baseline (pre-PEA) until up to 5 years post-PEA. CAMPHOR scores were compared between (i) those with and without clinically significant residual PH and (ii) those undergoing PEA and propensity-matched CTEPH patients who were not operated on. The minimally clinically important difference (MCID) was calculated using an anchor-based method.ResultsOf 1324 CTEPH patients who underwent PEA, 1053 (80%) had a CAMPHOR score recorded pre-PEA, 934 (71%) within a year of PEA and 784 (60%) had both. There were significant improvements between pre- and post-PEA in all three CAMPHOR domains (median±interquartile range: activity, −5±7; QoL, −4±8; and symptoms, −7±8; p<0.0001, all). Improvements in CAMPHOR score were greater and more sustained in those without clinically significant residual PH. CTEPH patients undergoing PEA had better CAMPHOR scores than those not operated on. The MCID in CAMPHOR score was −3±5 for activity, −4±7 for QoL, and −6±7 for symptoms.ConclusionsPROs are markedly improved by PEA in patients with CTEPH, more so in those without clinically significant residual PH.

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Section: Discussionmentioning

confidence: 99%

CAMPHOR score: patient-reported outcomes are improved by pulmonary endarterectomy in chronic thromboembolic pulmonary hypertension

et al. 2020

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“…In patients who declined surgery the severity of pulmonary haemodynamics and D LCO predicted outcome, with median thresholds for D LCO , right atrial pressure and S vO 2 having negative predictive values for 3-year mortality >95%. For a selected cohort of patients who despite counselling decline surgery this information may be useful, although it must also be emphasised that quality of life benefits in the majority of patients are greater with surgery [36, 37]. In contrast, patients with severe haemodynamics assessed to be good surgical candidates may find data highlighting a poor prognosis in the absence of a surgical intervention an aid to decision making.…”

Section: Discussionmentioning

confidence: 99%

The impact of patient choice on survival in chronic thromboembolic pulmonary hypertension

et al. 2018

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Pulmonary endarterectomy (PEA) is the gold standard treatment for operable chronic thromboembolic pulmonary hypertension (CTEPH). However, a proportion of patients with operable disease decline surgery. There are currently no published data on this patient group. The aim of this study was to identify outcomes and prognostic factors in a large cohort of consecutive patients with CTEPH.Data were collected for consecutive, treatment-naive CTEPH patients at the Pulmonary Vascular Disease Unit of the Royal Hallamshire Hospital (Sheffield, UK) between 2001 and 2014.Of 550 CTEPH patients (mean±sd age 63±15 years, follow-up 4±3 years), 49% underwent surgery, 32% had technically operable disease and did not undergo surgery (including patient choice n=72 and unfit for surgery n=63), and 19% had inoperable disease due to disease distribution. The 5-year survival was superior in patients undergoing PEA (83%) technically operable disease who did not undergo surgery (53%) and inoperable due to disease distribution (59%) (p<0.001). Survival was superior in patients following PEA compared with those offered but declining surgery (55%) (p<0.001). In patients offered PEA, independent prognostic factors included mixed venous oxygen saturation, gas transfer and patient decision to proceed to surgery.Outcomes in CTEPH following PEA are excellent and superior to patients declining surgery, and strongly favour consideration of a surgical intervention in eligible patients.

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“…It has also been used in two studies of patients with CTEPH [ 46 , 51 ]. The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) was specifically developed for patients with PH, and when used has demonstrated sensitivity to changes in HRQoL in studies of patients with CTEPH or PAH [ 21 , 53 – 56 ]. CAMPHOR may also have use as a prognostic tool.…”

Section: Qol Measurement Toolsmentioning

confidence: 99%

“…A retrospective comparison of 82 surgically and medically treated patients with CTEPH found that those receiving PAH-targeted therapies not licenced for CTEPH and patients with persistent/recurrent PH after PEA did not have significantly improved HRQoL (measured with CAMPHOR), despite improved exercise capacity, WHO FC and Borg dyspnoea score [ 56 ]. However, patients who had undergone PEA and were left with no residual PH had significantly improved HRQoL scores in all three CAMPHOR domains (p<0.001).…”

Section: Effects Of Treatment On Qol In Patients With Ctephmentioning

confidence: 99%

Quality of life in patients with chronic thromboembolic pulmonary hypertension

et al. 2016

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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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Functional and Quality of Life Improvements in Treated Patients with Chronic Thromboembolic Pulmonary Hypertension

Cited by 4 publications

References 0 publications

CAMPHOR score: patient-reported outcomes are improved by pulmonary endarterectomy in chronic thromboembolic pulmonary hypertension

CAMPHOR score: patient-reported outcomes are improved by pulmonary endarterectomy in chronic thromboembolic pulmonary hypertension

The impact of patient choice on survival in chronic thromboembolic pulmonary hypertension

Quality of life in patients with chronic thromboembolic pulmonary hypertension

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