National Audit of Pulmonary Hypertension, 14th Annual Report

I am delighted to have been asked to write the foreword for the 14th NAPH Annual Report this year, having left NHS England in May 2023 following voluntary redundancy due to organisational changes. Many criticisms are levelled at national audits for being heavy on the data collection and light on improvements for patients - something that cannot be said for this National Audit. It has had, for many years, multi-stakeholder engagement – Pulmonary Hypertension Association UK (PHA UK) representing patients, service commissioners and all service providers from the PH centres. This robust engagement has led to continued, demonstrable improvements in many of the National Standards and has been able to provide quality assurance to patients of the level of service their local PH centre provides. Having been the Clinical Audit Manager on the NAPH for 12 years it is great to see it continue to go from strength to strength. This year has seen the development of a public-facing dashboard of the results of the National Standards and outcomes, as well as returning to centre level result publication post-pandemic and the development of a number of new standards to keep the report focused on what is important in PH care.

A big thank you should go to the clinical teams who doggedly collect, check and enter the data and to the audit team at NHS England who provide the expertise to produce this amazing resource for clinicians, commissioners and patients alike.

Julie Michalowski, former Clinical Audit Manager of NAPH, NHS England

The NAPH sets out to measure the quality of care provided to people referred to PH services in Great Britain (England, Scotland, Wales) by answering a number of questions:

The Audit answers these questions through the measurement of a number of professionally-agreed National Standards reported at a national and centre level. 

This report is of particular interest to commissioners and healthcare providers to monitor the quality and effectiveness of PH services. It may also be of interest to researchers and charities working on this subject and to members of the public, including those with PH.

• Data is collected and submitted by hospital staff at PH services in Great Britain. Efforts continue to be made to incorporate Northern Ireland into the Audit again.
• The Audit is delivered by NHS England in collaboration with NHS Scotland, NHS Wales (GIG Cymru), the Pulmonary Hypertension Association (PHA UK) and the National Pulmonary Hypertension Centres of United Kingdom and Ireland Physicians' Committee.
• Please see the Data quality statement for information on data quality.

The 14th Annual Report, demonstrates that the national network of PH centres continues to provide high quality care, despite more patients being evaluated and commenced on PH therapies than at any time since its inception. This should provide reassurance to people affected by PH, commissioners and healthcare professionals, at a time when the NHS is experiencing unprecedented pressures.

In addition to reporting on performance against National Standards, survival analysis highlights the excellent outcome of patients with chronic thromboembolic PH who undergo surgical intervention but the poor outcome of people with respiratory disease who develop PH. In doing so, we highlight areas where new therapies are making a difference and where there is an unmet need. We hope this will stimulate research to understand more about different forms of PH and aid the development of new interventions.

Given the increasing age and complexity of patients being assessed and treated the Audit will be recording additional information on comorbidities. In coming years, this will provide us with valuable real-world evidence on how different people affected by PH respond to treatment. 

As we look to the future, we have changed the format of the National Audit which we hope will make it more accessible to users. This will also allow the presentation of more granular data, including annual incidence and prevalence rates and factors that influence response to treatment and survival. By continuing to evolve the National Audit will ensure that we provide information that will help facilitate the provision of high-quality, equitable care for people affected by PH.

Professor David G Kiely, NAPH clinical lead