Quality of life with PH The results of the Living with PH survey confirmed that, beyond doubt, pulmonary hypertension has a significant impact on quality of life. Of the 563 people who shared their experiences, 60 per cent said that PH has a ‘major impact’ on their overall quality of life, with life expectancy, emotional and mental wellbeing and relationships all causing concern. But although these statistics paint a challenging picture of life with PH, 45 per cent of respondents said the treatment and professional care they receive improves their overall quality of life ‘a lot'. The Living with PH survey also showed that patients rate improvement in quality of life to be more important than increased life expectancy when it comes to what they hope to gain from their treatment. Professor David Kiely, Clinical Lead at the Sheffield Pulmonary Vascular Disease Unit, said: “The results of the Living with PH survey, showing the very major impact on quality of life, reflects what many of us have witnessed over the years in lots of interactions with patients. Once again, the PHA UK and the UK patient population has provided very important information that will help us inform our practice as we look to a cure in the future."
Measuring quality of life
Quality of life is now routinely measured when patients receive treatment for PH. Two disease-specific quality of life outcome measures are used by the UK specialist centres EmPHasis-10, which was developed and supported through funding by the PHA UK at the University of Manchester - and the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR). Natalie Doughty, Pulmonary Hypertension Clinical Nurse Specialist at Papworth Hospital, said: “Assessing the effectiveness of our treatments in relation to improvement of quality of life is increasingly important to both patients and service commissioners, especially in light
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of the research by the PHA UK. I would certainly encourage patients to complete the questionnaires when asked to do so at their visit to their PH centre. The results are carefully scrutinised and compared to previous results for the individual patient, and these provide valuable insights into the effectiveness of our treatments over time.” EmpPHasis-10 consists of ten questions which address breathlessness, fatigue, control and confidence. The measure is now being used all over the world and an online version is in development.
It’s critical to take quality of life into account when treating a patient for PH Dr Simon Gibbs, Lead Clinician and Honorary Consultant Cardiologist for the National Pulmonary Hypertension Service at Hammersmith Hospital, said: “From a medical point of view, EmPHasis-10 is a systematic way of finding out about a patient’s quality of life and in clinic, it enables me to see at a glance how a patient is doing. It’s also a way of monitoring the change in quality of life over time. It’s critical to take quality of life into account when treating a patient for PH. In chronic disease, you have to treat the whole patient, not just one medical condition.” Professor Kiely added: “Importantly, emPHAsis-10 allows us to measure the impact of PH on people’s lives. And given that improved quality of life has been identified by patients and their families as being of critical importance, this will help us to assess the impact of many interventions - not limited just to drugs, but also including other forms of support and help such as pulmonary rehabilitation.”
60%
of respondents said PH has a ‘major impact’ on their overall quality of life.
