Quality of life and PH

Quality of life with PH 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 practice as we look to a cure in the future." 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 scrutinised and compared to previous results for the individual patient, and these provide valuable insights into the effectiveness of our treatments over time.” The results of the Living with PH survey confirmed that, beyond 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 doubt, pulmonary hypertension has in development. a significant impact on quality of life. It’s critical to take quality of life into 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 Dr Simon Gibbs, Lead Clinician and Honorary Consultant and relationships all causing concern. Cardiologist for the National Pulmonary Hypertension

But although these statistics paint a challenging picture Service at Hammersmith Hospital, said: “From a medical of life with PH, 45 per cent of respondents said the treatment point of view, EmPHasis-10 is a systematic way of finding out and professional care they receive improves their overall about a patient’s quality of life and in clinic, it enables me quality of life ‘a lot'. to see at a glance how a patient is doing. It’s also a way of

The Living with PH survey also showed that patients rate monitoring the change in quality of life over time. It’s critical improvement in quality of life to be more important than to take quality of life into account when treating a patient for increased life expectancy when it comes to what they hope PH. In chronic disease, you have to treat the whole patient, not to gain from their treatment. just one medical condition.”

Professor David Kiely, Clinical Lead at the Sheffield Professor Kiely added: “Importantly, emPHAsis-10 allows us Pulmonary Vascular Disease Unit, said: “The results of the to measure the impact of PH on people’s lives. And given that Living with PH survey, showing the very major impact on improved quality of life has been identified by patients and quality of life, reflects what many of us have witnessed over their families as being of critical importance, this will help us the years in lots of interactions with patients. Once again, to assess the impact of many interventions - not limited just to the PHA UK and the UK patient population has provided drugs, but also including other forms of support and help such very important information that will help us inform our as pulmonary rehabilitation.” 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 60% of respondents said PH has a ‘major impact’ on their overall quality of life.

account when treating a patient for PH

What does 'quality of life' mean to you?

Let us know what quality of life means to you by using the hashtag #BreathlessNotVoiceless on Twitter and Facebook.

The Living with PH survey also uncovered experiences of diagnosis, treatment and financial impact, which we will be exploring in more detail over the coming months. A summary of the survey results is enclosed with this magazine. For further copies, or to request the full report, please email office@phauk.org or call 01709 761450.