Conference: 2014 International PHA Conference and Scientific Sessions
Release Date: 06.22.2014
Presentation Type: Abstracts
File Download: 2014 Conference Abstract - M. Elizabeth Knauft
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Recent literature suggests that Pulmonary Arterial Hypertension care delivery in the community may suffer from significant variations in quality.
Background: Recent literature suggests that Pulmonary Arterial Hypertension care delivery in the community may suffer from significant variations in quality. We sought to better understand our local quality of care by developing a quality assessment program to assess our adherence to PAH practice measures advocated by the 5th World Congress on Pulmonary Hypertension.
Methods: We developed a registry of our patients with pulmonary hypertension in order to record multiple process measures of PAH care as well as surrogate outcome measures. Measures included accurate assessment of PH Diagnostic Classification (Group 1-5), frequency of obtaining functional assessments (WHO Functional Class determinations and 6 MWD testing performance), BNP levels and echocardiograms. We also recorded the surrogate PAH/CTEPH outcome measurements of the values for WHO functional class and 6 MWD where available.
Results: Our registry includes a total of 115 patients being actively managed in the prior year. The PH diagnostic group distribution was as follows: Group 1 = 73%, Group 2 = 17%, Group 3 = 9%, Group 4 = 10%, and Group 5 = 2%. For Group 1 (PAH) and Group 4 (CTEPH) diagnostic groups, assessments of WHO Functional Class were obtained in 99% (mean = 3.0 times per year) and exercise 6MWD tests were obtained in 97% (mean = 2.2 times per year).BNP was obtained annually at least once in 81% and annual echocardiograms were obtained in 93% of patients. For our PAH/CTEPH patients followed the mean WHO Functional Class was 2.3. For our PAH/CTEPH patients the median 6 MWD was 393 meters (mean = 387 meters), and the median distance of the most recent 6 MWD was 395 meters (mean = 375 meters).
Conclusions: Creating a simple patient registry can aide in better understanding of PH diagnostic and management issues such as adherence to diagnostic guidelines, clinical trial potential, PAH process measures, surrogate outcome measures and over time, true outcome measures.