The impact of PH on quality of life: new evidence revealed

People diagnosed with pulmonary hypertension experience a significant reduction in their quality of life, research from the Pulmonary Hypertension Association (PHA UK)  has found.

In their major survey conducted last year, sixty per cent of respondents said the serious condition has a ‘major impact’ on their overall quality of life.

The results of the Living with Pulmonary Hypertension survey, published this week, show that emotional and mental wellbeing, and relationships with family and friends, are severely affected by the condition.

Almost 600 patients responded to the  survey, which reveals that concerns about life expectancy have the biggest impact on quality of life – with over 50 per cent reporting a ‘major impact’. Almost two thirds (63 per cent) said that financial worries had an impact on their lives.

The survey, which looked at all aspects of life with PH, also discovered that almost half of patients had to wait over a year after first experiencing symptoms before being diagnosed. 40 per cent had to see four or more doctors.

Iain Armstrong, chair of PHA UK, said: “Everyday life can be very challenging for people with pulmonary hypertension and the results of this survey show just how much the condition impacts upon quality of life for patients and their loved ones. This was vital research into what it means to have PH in the UK today and it provides concrete evidence which can be used to address the crucial need for targeted treatment and specialist care.”

The full survey results can be accessed here

Watch people affected by PH talk about their life with the condition here

 

“Out of everything I’ve been through health-wise over the last four years, the memory of being told I had pulmonary hypertension is still the thing that haunts me. I know everyone dies eventually, but it’s very rare that you’re given a sell-by date.

“If anything, it’s the mental strain that I have suffered from more than the physical symptoms. But my children help me manage my condition by making me smile more than anything or anyone can – even when I don’t feel able to.”

David Stott, Preston

 

“I was originally told my symptoms of breathlessness were down to asthma and I tried every inhaler going. As well as it being rare, it’s also invisible, and that’s what I find tough. I have a disability badge for my car, and I get a lot of looks because when I go out I slap on the make-up so I can look my best, and not look ill.

“There are times when I do think about what’s ahead of me and I feel sad. I know things will get bad, but until that time comes, I’m going to continue living the life that I’m leading and think of the now, not the future.”

Tess Jewson, Essex