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
Methodology
Changes to National Standards
| National Standard | Change | |||
| No. | Description | 12th Annual | 13th Annual | Reason |
| Report | Report | |||
| All | Due to the COVID-19 pandemic, PH centre level data have not been assessed for the 2021-22 audit year. | PH centre level data not reported or assessed against National Standards. | PH centre level data reported but not assessed against National Standards. | Due to the impact of COVID-19 on PH centre resources during 2020 and 2021, the PH centres and the National Audit Project Board have elected to report PH centre level data for 2021-22 but not assess them against National Standard targets. |
| 4b | New PAH/CTEPH/no diagnosis patients should be seen or discharged within 30 days. | National level figures for all PH centres combined. | National Standard 4b figures for the children’s centre only. |
Standard 4b was introduced for the children’s centre in the 11th Annual Report and reported since 2018-19. Adult PH centres were included in the national total for the first time in 2019-20 and 2020-21. Following the 2022 PHOG meeting it was agreed that standard 4b was no longer required for the adult patient pathway. Therefore for the 13th Annual Report standard 4b is reported for the children’s centre only. Furthermore for the non-adult pathway, which does not include standard 4a, it was agreed that the denominator and numerator should be extended to include no diagnosis. Therefore for the 13th Annual Report standard 4b now includes patients with no diagnosis. |
| 6b | Patients should have pre-treatment WHO functional class recorded. | National level data reported. | National and PH centre level data reported. |
New standard introduced in 12th Annual Report. Results were reported nationally for the 12th Annual Report and reported by PH centre level for the first time in the 13th Annual Report. Access to exercise testing was limited due to the COVID-19 pandemic. However, it is still essential that WHO functional class is recorded before patients begin any pulmonary hypertension drug therapy.
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| 11b | Patients who have quality of life recorded should have a score recorded | National level data reported. | National and PH centre level data reported. |
New standard introduced in 11th Annual Report which was reported nationally for the 11th and 12th Annual Reports. Results are reported by PH centre level for the first time in the 13th Annual Report. It is important to know that QoL is being assessed. However recording the score also allows for assessment of changes over time and the impact of interventions.
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| 12 | Patients receiving a PH drug should have an annual consultation | Target = 90% | New Target = 95% | Recognising that annual consultations include face-to-face and non-face-to-face, it was agreed at the 2022 PHOG meeting that the target should be raised from 90% to 95%. |
| 14 | Waiting times for BPA should be <18 weeks | National level data reported for 2019-20 and 2020-21. | National and PH centre level data reported. |
New standard introduced in 11th Annual Report. However, to allow PH centres additional time to gather the balloon pulmonary angioplasty (BPA) multidisciplinary team (MDT) decision to treat date, 2019-20 and 2020-21 national results were reported for the first time in the 12th Annual Report. Results are reported by PH centre level for the first time in the 13th Annual Report. This measurement looks at the time it takes from decision to treat by the MDT to surgery at Royal Papworth, the single pulmonary endarterectomy (PEA) centre in the UK. BPA may result in marked clinical improvement for patients who are not eligible for surgery or who have recurrent or persistent pulmonary hypertension following PEA. |
| 15 | PH centres should record patient participation in research | National level data reported. | National and PH centre level data reported. |
New standard introduced in 11th Annual Report, reported nationally for the 11th and 12th Annual Reports. Results are reported by PH centre level for the first time in the 13th Annual Report. Patient participation in research enables PH researchers to study the disease, leading to improved medical understanding, the development of further treatments and improvements in patient outcomes. |
National Standards
| National Standard | Methodology | ||
| No. | Description | Denominator | Numerator |
| Cases assessed | How met? | ||
| 1 | PH centres should participate in the Audit [all PH centres] | All PH centres that treat patients in England, Scotland and Wales. | PH centres will determine if they are participating. Failure to participate will remove them from all other standards. |
| 2a | Adult PH centres should see a sufficient number of patients with PAH or CTEPH [adult PH centres] | All PH centres that treat adult patients in England, Scotland and Wales. | PH centres are expected to manage (1) at least 300 adult patients per annum with pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH). |
| 2b | The children's PH centre should see a sufficient number of patients [children only] | The specialist children’s PH centre that treats patients from England, Scotland and Wales. | The specialist centre is expected to manage (1) at least 300 patients per annum, of whom at least 100 patients have pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH). |
| 3 | New patients should be diagnosed within 6 months [adults and children] | Patients with a first referral letter received between 6 months before the audit start date and 6 months before the audit end date. | Patients in the denominator with a diagnosis recorded. |
| 4a | New patients should be seen or discharged within 30 days [adults only] | Patients with a first referral letter received between 30 days before the audit start date and 30 days before the audit end date. | Patients in the denominator with a consultation (inpatient, day case or outpatient) or discharged within 30 days following the date of the first referral. |
| 4b | New PAH/CTEPH/no diagnosis patients should be seen or discharged within 30 days [children only] | Patients with a latest diagnosis of PAH, CTEPH or no diagnosis, where a first referral letter was received between 30 days before the audit start date and 30 days before the audit end date. | Patients in the denominator with a consultation (inpatient, day case or outpatient) or discharged within 30 days following the date of the first referral. |
| 5 | Patients receiving a PH drug should have pre-treatment cardiac catheterisation [adults only] | Patients with a first drug in the audit year (whose latest diagnosis is not congenital heart disease and who did not start their drug before referral). | Patients in the denominator with a cardiac catheterisation that took place either before, or within 14 days, of the date of the first drug. |
| 6a | Patients should have pre-treatment WHO functional class and an exercise test recorded [adults only] | Patients with a latest diagnosis of PAH or CTEPH, whose first pulmonary hypertension drug is in the audit period and who did not start a pulmonary hypertension drug before their first referral. | Patients in the denominator who have a WHO functional class and an exercise test recorded before the start date of their first pulmonary hypertension drug. |
| 6b | Patients should have pre-treatment WHO functional class [adults only] | Patients with a latest diagnosis of PAH or CTEPH, whose first pulmonary hypertension drug is in the audit period and who did not start a pulmonary hypertension drug before their first referral. | Patients in the denominator who have a WHO functional class recorded before the starting date of their first pulmonary hypertension drug. |
| 7 | Patients should have a pre-treatment vasoreactivity study recorded [adults only] | Patients with a latest diagnosis of idiopathic, heritable or drug-induced PAH whose first pulmonary hypertension drug is in the audit period and who did not start a pulmonary hypertension drug before their first referral. | Patients in the denominator with a vasoreactivity test involving nitric oxide, prostanoid or adenosine recorded before the start date of their first pulmonary hypertension drug. |
| 8 | New patients should begin drug therapy within 12 weeks of referral [adults and children] | Patients with a first referral letter received between 12 weeks before the audit start date and 12 weeks before the audit end date, and a latest diagnosis of idiopathic, heritable, anorexigen-induced or connective tissue disease associated PAH, and with a highest WHO functional class of II, III, or IV who had not started any first drug therapy before their first referral date. | Patients in the denominator with a first drug therapy within 12 weeks of first referral. |
| 9 | Patients receiving a PH drug should have had a PH diagnosis recorded [adults only] | Patients with an active drug therapy at the end of the audit year, who did not start a drug before their first referral. | Patients in the denominator with a latest diagnosis of pulmonary hypertension. |
| 10 | First line drug therapy for PAH should be a phosphodiesterase 5 (PDE5) inhibitor [adults only] | Patients who started their first drug (where the first drug was not a calcium channel blocker) between the audit start date and audit end date, whose latest diagnosis was PAH. | Patients in the denominator whose first drug was exclusively a phosphodiesterase 5 (PDE5) inhibitor. |
| 11a | Patient QoL should be recorded [adults only] | Patients with a latest diagnosis of PAH or CTEPH with a consultation (inpatient, day case or outpatient) between the audit start date and audit end date. | Patients in the denominator that have at least 1 QoL questionnaire recorded between the audit start date and audit end date. |
| 11b | Patients who have QoL recorded should have a score recorded [adults only] | Patients with a latest diagnosis of PAH or CTEPH with a consultation (inpatient, day case or outpatient) between the audit start date and audit end date and at least 1 EmPHasis-10 QoL questionnaire recorded between the audit start date and audit end date. | Patients in the denominator that either have an EmPHasis-10 score recorded or have no score recorded due to patient choice or incapacity. |
| 12 | Patients receiving a PH drug should have an annual consultation [adults and children] | Patients with an active drug therapy at the end of the audit year, who did not start a drug before their first referral. | Patients in the denominator who had a consultation between 1 month before the audit start date and audit end date. |
| 13 | Waiting times for pulmonary endarterectomy should be <4 months [adults only] | Patients having their first pulmonary endarterectomy in the audit year with a first diagnosis of CTEPH before the date of pulmonary endarterectomy. | Patients in the denominator where first diagnosis of CTEPH is ≤4 months before pulmonary endarterectomy. |
| 14 | Waiting times for BPA should be <18 weeks [adults only] | Patients having their first BPA in the audit year with a first diagnosis of CTEPH before the date of BPA. | Patients in the denominator where the BPA MDT meeting decision to perform BPA is ≤18 weeks before the BPA procedure |
| 15 | PH centres should record patient participation in research [adults only] | Patients with a referral active on 31 March at the end of the audit year. | Patients in the denominator with a research start date on or prior to the end of the audit year. |
Notes:
1. An open referral at any point in the year will constitute 'manage' within this context. The latest diagnosis will determine PAH or CTEPH.
Last edited: 19 January 2023 9:31 am