The early results Thank you to everyone who took part in the 2016 Living with Pulmonary Hypertension survey, designed to gain information on the patient journey and how PH impacts on daily living.
• 48% of respondents waited over a year for a diagnosis after first experiencing symptoms. • 46% of patients had their symptoms for over six months before going to see a doctor. • 32% of patients were admitted as an emergency because of their symptoms. • 40% of patients saw four or more doctors being diagnosed. • Both time to diagnosis and the number of doctors seen before diagnosis remain as good, or slightly better, than reported in the two previous surveys. • Since being diagnosed, 48% of patients see a specialist at least every six months, and 87% see a specialist at least every 12 months. • 46% reported their overall quality of life has improved ‘a lot’ and 62% think the support they receive is excellent. 26% think it is good. • 92% of patients said they thought it was better to travel to a specialist PH centre rather than to be under the care of a non-PH specialist at a more local hospital. This survey found that care of patients with PH is perceived as good or excellent and patients were keen to travel to specialist PH centres for their care. Compared with the previous survey in 2010, the percentage of patients seeing more than three doctors before diagnosis was
.
Thank you to everyone who took part in the survey. More details about the results will be made available soon. Average time to diagnosis
60
2007
50
2010
2016 50 49 52
40 30 20 10
14 14 14
0
15 14
18
<3 MNTH 3-6 MNTH
21 21 20
18 18 16
6-12 MNTH
11
1-2 Yr
15
22 12
2-3 Yr
19 20
>3 Yr
<1 Yr
PH Specialist Centres patient numbers 7000
Numberof ofpatients patients Number
KEY FINDINGS
reduced, possibly suggesting an increasing awareness of pulmonary hypertension amongst physicians. However, a large percentage of patients had symptoms for more than six months before seeing a doctor, which has hardly improved since previous surveys. As earlier diagnosis of patients results in better long-term survival, we will continue to work to raise awareness of pulmonary hypertension in the UK.
Percentage of patients
We received 563 responses and have been able to compare results with similar surveys carried out in 2007 and 2010. The average age of participants was 59, and the average age at diagnosis was 53. 70% of participants were female.
7000
2010
6000
6000
2010 2016
2016 6617
6617
5000 5000 4000
4000
4287
3000
3000
2000
2000 1000 0 1000
0
4287
2169
1789
1789
2169 Managed PTS
New Referrals
New Referrals
Managed PTS
SPRING 2017 emphasis 23
