National Pulmonary Hypertension Audit, 15th Annual Report

NHS England undertakes data quality work with the organisations participating in the Audit. Following that data quality work, a copy of the collection database is taken to be used in the creation of the Audit report. The data cleaning work outlined in this document is only undertaken on the extract of data used in this analysis. The guiding principle applied to this cleaning work is that – overall – it will improve the quality of the data. We accept that sometimes the cleaning work we undertake may not produce the correct answer for a particular patient, but we consider the overall improvement of the data to be worth these minor impacts.

While the above cleaning rules resolve a number of data quality issues, others not covered by general rules can remain. These are investigated and then resolved by a manual clean for that specific circumstance.

Actions undertaken can include:

• Deleting a diagnosis
• Deleting a referral
• Deleting a therapy
• Closing a therapy

While dates of death are initially provided for Audit patients by the specialist centre, the provided data is improved for patients from English specialist centres by linking the Audit data with Office for National Statistics (ONS) mortality data.

Who is traced at ONS?

NAPH mortality data for patients submitted by English specialist centres has been supplemented by data from ONS. Patients submitted by the Scottish specialist centre cannot be traced at ONS.

What has changed?

In the 7th Annual Report, ONS date of death was only taken if a patient’s death date was already recorded in NAPH. Since the 8th Annual Report, the date of death as recorded in ONS has also been included for those patients without a date of death in NAPH.

Clinical audit is a recognised and established approach to quality improvement in clinical practice. The key principle of clinical audit is the measurement of clinical practice against professionally developed clinical standards. Where practice does not meet the standard, the clinical team should investigate and reflect on why, before developing local action plans to document the proposed action for change if this is identified.

This is the ninth time that the Audit has used standards against which to measure clinical practice. In the first year (7th Annual Report), standards were reported at national level only. In the second year (8th Annual Report), the standards in the Audit were agreed (standards from the 7th Annual Report that were deemed not to be relevant were removed) and results at specialist centre level were included. In the third and fourth year (9th and 10th Annual Report), comparisons were made at centre level to examine any changes in their performance against the standards over time.

Development of standards

The National Standards and their targets are reviewed by the Pulmonary Hypertension Outcomes Group (PHOG) and developed over time, to make them more challenging. Thus raising the quality of care being delivered. New standards will be introduced and those no longer of value will be retired. It is expected when developing standards that sometimes the analysis does not show what was intended to be measured and therefore that standard cannot be reported on. Such standards will be removed from further measurement.

Changes to the National Standards for the 15th Annual Report are discussed in the ‘Coherence and Comparability’ section below.

Adult and children standards

The standards used are applicable to all adult pulmonary hypertension (PH) centres, even though the centres do not provide identical services. 6 of the 15 standards are applicable to Great Ormond Street Hospital, which provides care to children with PH.

Assessment of results

The 15th Annual report covers the period of the COVID-19 pandemic which started in early 2020. To account for the increased burden on PH centres during the early stages of the COVID-19 pandemic, it was decided not to assess PH centres against targets for 2019-20. While 2019-20 PH centre data has been published, targets have only been assessed at national level.

To prevent inappropriate comparisons between PH centres during the peak of the COVID-19 pandemic, PH centre results have not been published for 2020-21.

It is important to continue to monitor the National Standards during and after the COVID-19 pandemic, therefore PH centre results for 2022-23 onwards have been published and assessed against targets in the 15th Annual Report. As with 2019-20 data, PH centre results have been reported but not assessed against targets for 2021-22. This is to reflect that individual centres may have been variably impacted by the aftermath of the COVID-19 pandemic.

For the 15th Annual Report, PH centre results have been reported and assessed against National Standard targets.

Meeting the standards

Most of the standards have a threshold, the percentage value that a centre is expected to be over or under. These thresholds are not set to 100% as the standards do not attempt to take every factor into account. This is because sometimes the care provided might happen in a way which does not meet the standard, but is not an indication that what happened was incorrect or bad practice. The purpose of the standard is to set a target level of compliance and for centres to reflect locally if changes in practice need to occur. These targets are set by the PHOG. At the time of publication all 15 National Standards have a target value.

When evaluating whether a target is met, the proportion of times the standard is met is rounded up or down to the nearest whole number. The standard is defined as met if the rounded number is greater than or equal to the target value (e.g. 89.6% would round to 90%, which would meet a target value of 90%).

It is important to note that the results shown in this report are based on the data submitted into the Audit database by the PH centres. If the data entered does not accurately represent clinical practice the results of the Audit may be misleading.

A thorough data quality report is provided to every centre each year to aid them in correcting any errors in their data entry. The centres are given a window of time to amend their data in the Audit database to confirm that the data does reflect their activity. It is expected that centres that identify their data to not be of sufficient quality after the closing of the data quality window will fully engage with the process in the future.

PH centres have continued to add and amend data related to patients reported on in the 14th Annual Report, providing a more complete picture of the care received by those patients. This is reflected in the revised national and centre level figures for 2016-17 to 2022-23 shown in the 15th Annual Report (see 'Coherence and Comparability' section below).

Explanatory note for Golden Jubilee

Due to different information governance rules in Scotland, data submitted from Golden Jubilee is anonymised using a pseudonymised patient identifier and only the first part of the postcode and the month and year of birth/death are provided. Therefore NHS England cannot identify a Scottish patient, whereas Golden Jubilee can. As a consequence:

• It is not possible for NHS England 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 analysis, once for the English recorded activity, and once for the Scottish.
• It is not possible for the 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.

For reporting, Golden Jubilee dates of birth are considered to be the first day of the provided month, while their dates of death are considered to be the last day of the provided month. For English and Welsh patients, the exact dates of birth and death are used.

Scotland are not included in the lung disease or left heart disease survival curves due to difficulties in obtaining death data for these patients.

Explanatory note for Newcastle

Newcastle operates a shared care clinic in Hull and East Yorkshire Hospitals NHS Trust (RWA). Hull submits their own data to the Audit however, for reporting, their data is combined with Newcastle data and reported as ‘Newcastle’.

Data covering activity up to the end of March 2024 was extracted from the Audit database in the week commencing 10 June 2024 and data quality reports were sent out to the PH centres the week commencing 17 June 2024. A further round of data quality reports were distributed in the week commencing 22 July 2024. The submitting centres had until 9 August 2024 to make any amendments to their data. The final extract of data was taken on 12 August 2024. The final report was published on 12 December 2024, 4 months after receipt of the final data extract and less than 9 months after the end of the audit year.

To support the pan-government open data and transparency initiative, all the data published in the report has also been provided in machine-readable comma separated variable (csv) text files. More information is available here: https://digital.nhs.uk/services/supporting-open-data-and-transparency.

Web links to the technical specifications of the data are available through the NHS Digital website and are available here: https://digital.nhs.uk/data-and-information/clinical-audits-and-registries/national-pulmonary-hypertension-audit.

For the 15th Annual Report, individual PH centre results have been reported and assessed against National Standard targets as per the 14th Annual Report. This is in contrast to the 12th and 13th Annual Reports, where data were assessed at national level only, to reflect that individual centres may have been variably impacted by the COVID-19 pandemic.

Analysis of patients with idiopathic, heritable of drug-related pulmonary arterial hypertension (IPAH) with comorbidities and IPAH without comorbidities has not been included since the 13th AR. The NAPH team team will conduct a future piece of work incorporating the new NAPH comorbidities fields into the definition of IPAH with and without comorbidities.

In previous annual reports IPAH with comorbidities was defined as a IPAH diagnosis with a secondary diagnosis relating to a comorbidity. The number of patients with IPAH with comorbidities recorded in the audit using this definition is believed to be an underestimate of the true prevalence and therefore the results from analysis of this cohort may not be a true representation.

• National Standard 6: (previously 6a) the target percentage has increased from 90% to 95%. 
• National Standard 11: the target percentage has increased from 90% to 95%.

• National Standard 6:
  • 'Patients should have a pre-treatment WHO functional class and an exercise test recorded' has been relabelled 6 (previously 6a)
  • 'Patients should have pre-treatment WHO functional class recorded' (National Standard 6b) has been removed. This standard was created as a result of the COVID-19 pandemic whereby PH centres were not always able to perform an exercise test, but it was still considered important to ensure an assessment of disease severity was recorded. Given the impact of the COVID-19 pandemic on services has since reduced, this standard is considered to no longer be required.
• National Standard 8: The definition has been extended to include PAH associated HIV infection. 
• National Standards 8b and 12b were introduced in the 14th Annual Report and presented at national level only for 2022-23. In this 15th Annual Report, these standards have been reported at PH centre level.

As in the previous NAPH report, results in the 15th Annual Report from previous years have been updated using:

1. The latest available information in the NAPH

All results in this report are derived from data extracted on 12 August 2024, meaning that results for earlier audit years (2015-16 to 2022-23) will sometimes differ from those published in previous reports. It is important to take the latest and most accurate cut of the NAPH data, therefore a new extract of data has been used. NAPH is a continuous collection and PH Centres are able to add, amend and delete information about patients used in earlier cohorts.

2. The latest methodology

Methodology is constantly reviewed and revised if required. Details of methodological changes to the National Standards (if any) are detailed above. The updated methodology has been applied to all audit years in the report.

To maintain the internal consistency of this report, it is important that the same methodology is applied across all audit years in the 15th Annual Report publication. Therefore, earlier years have been updated with the new methodology.

3. The latest targets

Target levels are constantly reviewed and revised if required. Changes to the targets for the 15th Annual Report (if any) are outlined above, with updated targets applied to all audit years in the report.

To maintain the internal consistency of this report, it is important that the targets shown in the 15th Annual Report tables are consistent across all audit years. Therefore, earlier years have been updated with the new targets.

Following the above changes, the figures produced for the 15th Annual Report supersede those previously published.

The patient activity collected in the Audit occurs in hospitals. Hospital Episode Statistics (HES) data is a widely used administrative data source for hospital activity, but it could not be used for the Audit as it does not include the level of clinical detail required.

Due to issues in maintaining a legal route for the submission of data related to patients treated in Northern Ireland, there has been no data submitted to the collection by services in Northern Ireland. In the 6th Annual Report limited analysis for Northern Ireland was presented. Full data for Northern Ireland was included in earlier reports.

The contents of the Audit report are designed under the direction of the Audit clinical lead and under guidance of all members of the National Audit of Pulmonary Hypertension Project Board, including commissioner and patient representation.

The standards used in this Audit report were approved by the representatives on the PHOG.

NHS England is keen to gain a better understanding of the users of this publication and of their needs. Your feedback is welcome and may be sent to [email protected] (please include ‘Pulmonary Hypertension Audit’ in the subject line).

Alternatively you can call our enquiries team on 0300 303 5678.

Or write to NHS England:

7 and 8 Wellington Place,

Leeds,

West Yorkshire,

LS1 4AP

A burden assessment review of the Audit was carried out by NHS Digital's Burden Advice and Assessment Service (BAAS) in 2015.