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For some time now, the lack of continuous care for congenital heart disease (CHD) patients who are transitioning from the pediatric to adult care settings has been a concern for adult cardiology practices.  Although many CHD patients require specialized care, many more still end up in adult cardiology clinics. I experienced two scenarios when seeing CHD patients in my nonurban practice; a basic layman’s history is provided or several storage boxes of records are presented that must be reviewed and summarized.  One is inadequate; the other is cumbersome and subject to errors of oversight.  A complete, organized patient history is difficult to come by and ultimately can threaten the quality of care as these cases continue to increase in volume. Enhancing collaboration between a coordinated care team, to include congenital heart specialists, and CHD patients would open the doors to consistent and efficient treatment.

I have come up with the acronym DOORRS to sum up the essential information patients should easily be able to provide their cardiologist upon an initial visit. 

D  Initial Diagnosis 

O  Operations Chronologically with institution and surgeon 

O  All Operative Notes 

R  Most Recent diagnostic studies and results 

R  Recommended follow up 

S  Special considerations or previous complicating factors unique to this patient 

I have received positive and encouraging feedback from colleagues and the College on this issue, which affects us all but to which there is no easy solution.  I know the ACC’s Adult Congenital and Pediatric Cardiology (ACPC) Section is on top of this issue and is dedicated to collaborating with patient advocacy groups, such as the Adult Congenital Heart Association, on promoting professional and patient resources for CHD patient care.  For the College’s part, several ACC chapters have supported past National Congenital Heart Lobby Day activities, which have focused primarily on advocating for national CHD surveillance tools.  

The Congenital Heart Futures Act (included in the ACA) authorizes establishing a population-based surveillance registry (through the CDC's existing National Center on Birth Defects and Disabilities). However, the funding for this expansion has not been appropriated.  

To compound the issues related to care of the CHD patients, limited outcomes data regarding CHD treatment is available. The NCDR’s IMPACT Registry™ (IMproving Pediatric and Adult Congenital Treatment) has been established to assess the prevalence, demographics, management and outcomes of pediatric and adult patients with CHDs who are undergoing diagnostic catheterizations and catheter-based interventions. The collection and analysis of this data facilitates performance measurement, benchmarking and quality improvement initiatives.  The IMPACT Registry, which has collected over 3,000 patient records so far, will provide significant contributions to the knowledge base and outcomes associated with CHD. While this is exciting and a big step forward, gaps in data collection and outcomes reporting remain in other CHD care settings, most notably the ambulatory setting.  

I look forward to hearing your thoughts on ensuring congenital heart disease patients receive appropriate care as they age and move out of the pediatric setting.  What have you done in your practice to increase efficiency for adult CHD patients? What resources and educational tools would be helpful to your care of adult CHD patients?  

Make sure to check out the Nov./Dec. issue of Cardiology Magazine for an article on ACHD.