Publication, Part of National Pulmonary Hypertension Audit
National Audit of Pulmonary Hypertension, 13th Annual Report
Audit, Open data
Future publication format
Please note that future reports will be web-based only. This is to improve the accessibility of our publications.
19 January 2023 09:30 AM
Glossary
Specialist PH centres
Patients with pulmonary hypertension are treated at 1 of 8 specialist pulmonary hypertension centres in the UK.
| Special Health Board / NHS trust of PH centre | Known as | Trust code (3) | |
| Golden Jubilee National Hospital | Glasgow | Golden Jubilee | SGC |
| Great Ormond Street Hospital for Children NHS Foundation Trust (1) | London | Great Ormond Street | RP4 |
| Imperial College Healthcare NHS Trust | London | Imperial College | RYJ |
| The Newcastle Upon Tyne Hospitals NHS Foundation Trust | Newcastle | Newcastle | RTD |
| Royal Brompton and Harefield NHS Foundation Trust | London | Royal Brompton and Harefield | RT3 |
| Royal Free London NHS Foundation Trust | London | Royal Free | RAL |
| Royal Papworth Hospital NHS Foundation Trust (2) | Cambridgeshire | Royal Papworth | RGM |
| Sheffield Teaching Hospitals NHS Foundation Trust | Sheffield | Sheffield | RHQ |
Notes:
1. Great Ormond Street provides care for children with pulmonary hypertension.
2. Royal Papworth Hospital is the only surgical centre in the UK for pulmonary endarterectomy.
3. With the exception of SGC, trust codes are derived from the Organisation Data Service. SGC is used in the NAPH only.
Patient cohorts used in the report
- Managed patients have a referral active at any point during the appropriate year.
- Active patients have a referral active on the 31 March of the appropriate year.
- Active drug therapies represent patients with at least 1 pulmonary hypertension drug therapy being prescribed on the 31 March of the appropriate year.
- The cohort for longitudinal analysis are patients whose first referral was on or after 1 April 2009. This cohort is used when there is a need to analyse data where the full treatment history for a patient is required. Since the Audit started on 1 April 2009, it is reasonable to expect that all of the events after that date will be recorded.
Scottish patients are submitted to the Audit by Golden Jubilee National Hospital using a pseudonymised patient identifier.
Therefore NHS Digital cannot identify a Scottish patient, although Golden Jubilee can. As a consequence:
- It is not possible for NHS Digital to identify patients who have been treated in both Scotland and England. This means that a small number of patients may be included twice in the cohort for longitudinal analysis, once for the English recorded activity, and once for the Scottish.
- It is not possible for the Office for National Statistics (ONS) to identify mortality data for Scottish patients, whereas for English and Welsh patients some deaths are identified by ONS, not the Audit. It is therefore likely that some Scottish deaths will be missed by the Audit, though the proportion missing is not known.
Acronyms and definitions
Significance testing
In the report, national results have been compared to those in the previous report to test whether changes over time are statistically significant at the 95% level (p≤0.05).
First the standard error (SE) of the difference between the results from the 2 audit years is calculated using the following formula:
The SE is then used to plot a normal distribution curve for the combined years. The observed difference in percentage points between years 1 and 2 is plotted on the x axis and used to derive the p value, the calculated probability of the observed difference being consistent with the null hypothesis (no difference between the audit years). A p value of ≤0.05 means that there is a 95% chance that the observed difference reflects a real difference between audit years and is not the result of normal variation.
Notes:
1. Formula from http://doc.ukdataservice.ac.uk/doc/6923/mrdoc/pdf/6923significance_and_confidence_intervals.pdf
2. Chart derived from http://bolt.mph.ufl.edu/6050-6052/unit-4/module-12/proportions-step-3/
Waiting times for PEA should be <4 months: Background
National Standard 13: Waiting times for pulmonary endarterectomy should be less than 4 months
The Audit can accurately measure the time from chronic thromboembolic pulmonary hypertension (CTEPH) diagnosis to surgery. The date of diagnosis is the date of the multidisciplinary team (MDT) meeting at the specialist PH centre when the diagnosis of CTEPH was confirmed.
The time period of 4 months was chosen by the commissioners in 2016, and is based on the patient entering the 18 week pathway as described in the NHS England PH service specification A11/S/1 2013-14:
“on receipt of all information on appropriate investigations, all patients who are eligible for pulmonary endarterectomy (PEA) and who would consider surgery, will receive surgery within 18 weeks (in line with the national referral to treatment pathway). However, the average waiting time will be less than 3 months and patients with a deteriorating condition will need an earlier operation. For Papworth patients the 18 week pathway starts once the patient has been assessed as suitable for surgery. For patients referred from external PH centres the PEA 18 week pathway starts on the MDT acceptance of suitability for listing. The clock stops once the patient has been admitted for PEA surgery.”
(page 5)
The NAPH 13th Annual Report for 2021-22 reported a median time from diagnosis to surgery of 34 weeks (33 weeks in 2020-21) – see Chart R 5 in Reference tables. Since the patient pathway is complex it may not be feasible to achieve 18 weeks after it is agreed that the patient is operable.
Last edited: 19 January 2023 9:31 am