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Q4 2008 - QUARTERLY UPDATE
In order to determine adherence to clinical practice guidelines, a quality enhancement research initiative known as PAH QuERI was created. This initiative is supported by a research grant from Actelion Pharmaceuticals to The Canadian Heart Research Centre, a non-for-profit academic research organization of Toronto, Canada.
Participating physicians were provided with guidelines on diagnosis and management of PAH and they were
asked to:
| • |
enroll known or newly diagnosed PAH patients into the PAH QuERI database |
| • |
use electronic case report forms (eCRFs)at baseline and regular intervals up to 3 years to report patient diagnostic work up, patient management and patient outcomes |
PAH QuERI Study Statistics - site locations
61: |
Initial number of participating sites |
57:
|
Current number of active sites |
807: |
Total patients enrolled |
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PAH QuERI Study Progress
FIRST PATIENT, FIRST VISIT:
FIRST PATIENT, LAST VISIT:
LAST PATIENT, FIRST VISIT:
LAST PATIENT, LAST VISIT: |
16 August, 2005
16 Nov, 2008
05 July, 2007
05 October, 2010 |
Out of 807 patients enrolled, 97% completed baseline,
79% completed the 6 months follow up visit,
70% completed the 1 year follow up visit and
38% completed the 2 year follow up visit
(% completion as of 07Jan, 2009) |
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PAH QuERI Study Progression Updates
Study Progression: Follow up visit date
achieved / actual visit completion (13May, 2008)
PAH QuERI Early Discontinuation Status
( 22 April, 2008: Total number of patients early terminated: 159 patients )
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Diagnostic classification – Differential diagnosis
(Venice, 2003)
| 1. |
Pulmonary arterial hypertension |
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Idiopathic PAH |
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Familial PAH |
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Related to: |
| - |
Connective tissue diseases |
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HIV |
| - |
Portal hypertension |
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Anorexigens |
| - |
Congenital heart diseases |
| • |
PPHN |
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PAH with venule/cap inv (PVOD) |
| 2. |
PH with left heart disease |
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Atrial or ventricular |
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Valvular |
| 3. |
PH with Lung Diseases/Hypoxemia |
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COPD |
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Interstitial lung diseases |
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Sleep-disordered breathing |
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Developmental abnormalities |
| 4. |
PH due to chronic thrombotic and/or
embolic disease |
| • |
TE obstruction of proximal PA |
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TE obstruction of distal PA |
| • |
Non thrombotic Pulm embolism |
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PAH definition: |
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mPAP >25 mmHg |
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PCW < 15 mmHg |
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PVR > 240 dyne.cm/sec-5 |
| • |
PAP associated with adverse changes: |
| |
- |
in the pulmonary vasculature (vasculopathy), and |
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- |
at the level of the right ventricle (hypertrophy) |
| • |
absence of lung disease, left-sided heart disease |
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McLaughlin VV. Chest. 2004;126:78S–92S.
| 1. |
To optimize patient care by providing current guidelines for PAH management through the process of data collection and database analysis. |
| 2. |
To further close the care gap in PAH management by providing feedback to individual physicians on their style of management compared to the national and regional averages. |
| 3. |
To follow PAH patients long-term (3 years) and to document outcomes in relation to treatment received. |
| Step 1: |
Current guidelines are provided on patient diagnosis after inclusion criteria are satisfied. |
| Step 2: |
|
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a. |
Practical steps towards confirming diagnosis: essential testing – all patients |
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b. |
Contingent tests – selected patients.
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| Step 3: |
Collect data on current patient management while providing guidelines and evidence-based approach. |
| Step 4: |
Interactive continuing professional development as part of QuERI: implementation of learned principles into practice, i.e. enhancement of care and closure of care gap through physician feedback. |
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Baseline data reported and signed off at 60 participating US sites on 782 patients enrolled in the PAH QuERI. (September 2008)
Review of the baseline clinical characteristics of the enrolled patients, revealed significant preponderance of women and a median age of 55 years. Majority of the patients were symptomatic and many were using supplemental oxygen.
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The first table summarizes the frequency with which ACCP-recommended diagnostic tests were deployed. Most of the tests were performed in more than 80% of the enrolled patients, however, V/Q scanning was performed only in 57% of patients, suggesting that the test that can rule out a correctable cause of pulmonary hypertension may not be deployed as optimally as it can be.The second set of tables summarizes the use of ACCP-recommended blood tests. While most of the tests are deployed I n the majority of the patients, HIV testing and CTD screen are not, once again raising the possibility of an incomplete work up of these complex patients.
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Demographics of QuERI reflect typical referral |
| • |
center practice |
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Female predominance |
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- |
Mostly Class II & III |
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- |
60/40 APAH/IPAH |
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- |
10% co-existing conditions |
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- |
87/56% dyspnea/weakness |
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- |
14% syncope |
| • |
Certain diagnostic tests may be underutilized and
may impact the patient management |
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A comprehensive and multi-pronged approach to the diagnostic evaluation of PAH is required |
| • |
Physicians treating PAH report multiple etiologies |
| • |
Certain essential diagnostic tests may be underutilized |
| • |
While ACCP guidelines recommend V/Q scanning to exclude correctable causes of PAH, and HIV testing is mandatory in all patients evaluated for PAH, these guidelines are not universally followed |
| • |
Given the treatment implications of LHD, a positive HIV test or abnormal V/Q scan, stricter adherence to guidelines may result in more optimal management of these high-risk patients |
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PAH QuERI Educational Initiative --
closure of care gap in PAH diagnosis and management through physician education:
A web-based individual and confidential feed-back on the baseline data reported has been recently implemented in order to provide each participating physician with diagnostic and treatment information about their own patients enrolled in the PAH QuERI in comparison with the overall performance and site distribution in academic and non academic centers.
Study Publication Corner:
Chest 2007:
Two abstracts on diagnostic work-up (main author Dr. R. Oudiz) and treatment of PAH (main author Dr. V. McLaughlin) in 517 patients from 52 US specialist physicians, baseline data from the Quality Enhancement Research Initiative, had been presented at CHEST 2007 meeting and published in the abstract supplement for 2007.
ACC 2009:
Two abstracts on the treatment of PAH baseline data from the QuERI (main author Dr. V. McLaughlin, poster presentation) and Mortality in patients with PAH in the Modern Era, data from the Quality Enhancement Research Initiative (main author Dr. Mathier, oral presentation) have been accepted for presentation at ACC 2009, March 29-31, 2009 in Orlando, Florida
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ATS 2009:
Tree abstracts on diagnostic work-up ( main author Dr. R. Oudiz, treatment of PAH ( main author Dr. V. MC Laughlin) and mortality in patients with PAH (main author Dr. M. Mathier), data from the Quality Enhancement Research Initiative, have been accepted for presentation at ATS 2009, May 15-20, 2009, San Diego, California
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“Challenges and Controversies in Clinical Cardiology” -- satellite during ACC -- Saturday, March 28, 2009 (12:00 -
2:40 p.m.) at the Rosen Centre Hotel in Junior Ballroom F.
view details »
 “Challenges and Controversies in Clinical Cardiology” satellite during ACC -- Monday, March 30, 2009 (5:30 - 7:00 a.m.) at the Rosen Centre Hotel in Junior Ballroom F.
view details »
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PAH QuERI Study Statistics
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