November 12th, 2013

Building Quality of Care for Adult Congenital Heart Disease Patients


CardioExchange Editor Harlan Krumholz interviews Michelle Gurvitz and Ariane Marelli about their study group’s JACC paper, for which they developed the first set of quality indicators (QIs) for adult congenital heart disease (ACHD) care. Using existing literature and guidelines and a modified Delphi process, a total of 55 QIs were identified, including 8 for atrial septal defects; 9 for aortic coarctation; 12 for Eisenmenger; 9 for Fontan; 9 for D-transposition of the great arteries; and 8 for tetralogy of Fallot.

Krumholz: What are your three favorite QIs among the group?

Gurvitz and Marelli:  Given the diversity of conditions and the multiple indicators per condition, it is difficult for us to choose three “favorites” among the group.  We would rather focus on groups of measures we think have potential for wider impact. These groups include routine visits, surveillance testing, and discussions regarding reproductive health.

One group that we think may be most actionable for ACHD patients are the indicators regarding annual surveillance.  This includes recommendations for routine follow up visits as well as regular interval testing.  There are little data on which to base the frequency of visits and surveillance testing for this population, however, there was significant agreement among the international guidelines and the expert panelists for certain types of conditions and the recommended visits and testing.  Gathering further information on practice patterns and relationships to outcomes will better inform our practices in the future.

From an awareness perspective, the working groups and expert panelists sought to “raise the bar” for practitioners in certain areas.  One example would be that the documentation of discussions regarding pregnancy and reproductive health were included for multiple conditions.  This speaks to the importance of addressing this topic in the context of the cardiology practice.

It will be important to gather further data on these measures and their relationship to outcomes.  This will help inform future modifications of measures and potentially impact resource utilization and cost effectiveness.

Krumholz: What was the measure that you did not adopt that you think is important and should be considered for the future?

Gurvitz and Marelli: In the development process, there were many measures that “fell off” at different stages of the process for reasons of evidence, validity, or feasibility; we expect that others may also fall off during the operationalization process and true feasibility testing of data collection from medical records. This does not mean these areas of care are not important, it typically means that there is disagreement about some aspect of the practice or there is difficulty in consistent and reliable measurement.

There were a few measures initially proposed regarding the timing of surgical interventions (e.g., pulmonary valve replacement in tetralogy of Fallot and tricuspid valve intervention in patients with systemic right ventricles) that were either not recommended by the working group or rejected based on the panel scores.  This happened because the working groups or the panelists did not think the available information was strong or consistent enough to support a quality measure at this time.  We hope that over time, as more data are collected, we will have enough evidence to propose surgical timing or referral as a quality measure.

In a completely separate area of interest, there were a number of measures proposed by the working groups and mentioned at the expert panel meeting that might apply across many CHD populations.  Some examples would be measures such as hepatits C testing for people with surgery prior to 1992 (only proposed for Fontan patients in our group), routine vaccinations, genetic screening, or even transition planning. Developing measures applicable to a larger population may be an endeavor considered in the future.

Krumholz: Will these QIs be measured at all major centers?

Gurvitz and Marelli: The measures still require testing for feasibility of data collection and relationship to outcomes.  They are at a stage that we think is useful for programs wishing to pursue internal quality improvement , but they are not meant to be considered as performance measures.  We hope that many centers will adopt all or some of the QIs for internal use and that they share data and experiences so we can all learn from the process.  Also, the measures are designed for use by both ACHD specialty cardiologists and internal medicine cardiologists who may follow ACHD patients in their practices.  We are hoping to test the measures in multiple environments in the future.

We are certain — and it is expected — that the measures will be modified over time as more data become available.  We encourage collaborative efforts with cardiologists, groups, or centers who are interested in their application.  We hope to pool collected data to try to improve the measures over time.

Krumholz: Will they be publicly available? If not, why not?

Gurvitz and Marelli:  All of the measure titles, categories, and scores are listed in the tables in the manuscript. Specific numerators, denominators, and exclusion criteria are easily available on request beyond what is published.

Krumholz:  Who will take responsibility to promote improved quality of care for these patients?

Gurvitz and Marelli: We feel it is the responsibility of every practitioner seeing ACHD patients to try to improve their quality of care. With this effort, we hope to participate in “shifting the curve” in improving care for ACHD patients.

Some patient advocacy organizations, such as the Adult Congenital Heart Association, are calling for improved quality and discussing how to potentially accredit ACHD centers.  The recent approval by the American Boards of Internal Medicine and Pediatrics to certify a specialty in ACHD is a tremendous step forward.  The American College of Cardiology, too, has been very supportive of efforts at building and measuring quality in CHD care with their efforts in data collection tools such as the IMPACT Registry and efforts in knowledge translation in collaboration with other organizations.

We hope this type of interest and support in quality improvement will continue among these and other national and international organizations involved in the care of ACHD patients.

Comments are closed.