Quality of life in patients with chronic thromboembolic pulmonary hypertension.

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.

Acceptability of low molecular weight heparin thromboprophylaxis for inpatients receiving palliative care: qualitative study.

OBJECTIVE: To find out what inpatients with advanced cancer who are receiving palliative care think about the effect of thromoprophylaxis on overall quality of life. DESIGN: Qualitative study using audiotaping of semistructured interviews. SETTING: Regional cancer centre in Wales. PARTICIPANTS: 28 inpatients with advanced metastatic cancer receiving palliative care and low molecular weight heparin. MAIN OUTCOME MEASURES: Recurring themes on the effect of thromboprophylaxis on overall quality of life. RESULTS: Major emerging themes showed that patients knew about the risks of venous thromboembolism and the purpose of treatment with heparin. Media coverage had raised awareness about venous thromboembolism, and many had previous experience of thromboprophylaxis. All found low molecular weight heparin an acceptable intervention, and many said that it improved their quality of life by giving them a feeling of safety and reassurance. Antiembolic stockings were considered uncomfortable and had a negative impact on quality of life. Patients were concerned that because they had advanced disease they might not be eligible for thromboprophylaxis. CONCLUSION: Low molecular weight heparin is acceptable to inpatients with advanced cancer receiving palliative care and has a positive impact on overall quality of life. Antiembolic stockings are an unacceptable intervention in this patient group. Guidelines on thromboprophylaxis are urgently needed for palliative care inpatient units and hospices.