ACPC Congenital Heart Disease Community Day: Leading Change
On March 16, 2017, approximately 150 congenital heart disease care providers, patients and parents, and administrators attended the second annual American College of Cardiology Congenital Heart Disease Community Day in Washington DC at Heart House. This 2017 session, as well as the inaugural Congenital Heart Disease Community Day in 2016, provides the Adult Congenital/Pediatric Cardiology (ACPC) section a forum through which we can "eliminate unnecessary variability" through collaboration amongst care providers and care centers. The ACPC section has embraced the concept of team (physicians, advanced practice providers, nurses, families and patients, and administrators) as we formulate strategies to deal with the continuum of care for our patient population. The section has recently published new quality metrics for the care of adult and pediatric congenital heart disease patients.1,2 These works are in alignment with the Institute of Medicine six domains of quality, especially patient-centered care.3 A recent NHLBI report documents many of the issues facing the ACPC section, as effective and efficient strategies for dealing with the heterogeneity of patient diagnoses and conditions, as well as the explosion of data and registries, will define enhanced clinical care protocols and guide impactful research efforts.4 Additionally, the world of transparency is now upon the CHD population and families, and public reporting of acute outcomes and the development of longitudinal outcomes has become a focal point for the section. Collectively, the ACPC section has an opportunity to define best practices for meaningful reporting of complex outcome data.
The theme for this second annual CHD Community Day was "Moving Toward a Better Understanding of Long-term Outcomes of CHD Care." The general afternoon session was bracketed by two important presentations from Drs. Gerard Martin and Kathy Jenkins, both past Chairs of the ACPC section. Dr. Martin spoke on "Advancing CHD Care: The Need for Long-Term Outcome Measures," and Dr. Jenkins' presentation was entitled "Opportunity for International Collaboration Around Outcomes." Additional presentations addressed the long-term outcomes from the patient perspective, as well as the global health burden of congenital heart disease survivors; these included psychosocial challenges for patients and families, non-cardiac multi-organ consequences of CHD and its care, late cancer risk after CHD care, vascular and metabolic health for CHD patients, and causes and outcomes. Issues of lifelong insurability, relationship between surgical performance and cost, and value creation through appropriate use criteria in pediatric echo were discussed.
Attendees then had the opportunity to participate in several different breakout sessions:
- Adult Congenital Heart Disease in Pediatric Cardiology Collaboration: could a long-term longitudinal database be created?
- Discussion regarding the development and measurement of ambulatory quality metrics through the ACPC quality network.
- The meeting of the Society of Pediatric Cardiology Training Directors.
The session ended with an informal forum for clinical chiefs, physician leaders, and administrators to discuss shared clinical program concerns and solutions.
The concept of a CHD Community Day is still relatively new, and the optimal format still being refined. Now scheduled the day before the ACC annual Scientific Sessions, this Community Day has been well-received by attendees. Measures of success include: 1) increasing ACC Scientific Session attendance; 2) increasing ACPC membership and engagement; and 3) the further development of clinicians/administrators/parent-patient community to advance care for our patients and families. Consistent with a recent editorial by immediate past president of the ACC, Dr. Richard Chazal,5 the ACPC Section realizes that change is upon us and that we have the opportunity to evolve and lead change, benefiting our patients and families.
- Chowdhury D, Gurvitz M, Marelli A, et al. Development of quality metrics in ambulatory pediatric cardiology. J Am Coll Cardiol 2017;69:541-55.
- Gurvitz M, Marelli A, Mangione-Smith R, Jenkins K. Building quality indicators to improve care for adults with congenital heart disease. J Am Coll Cardiol 2013;62:2244-53.
- Committee on Quality of Health Care in America. Crossing the Quality Chasm, A New Health System for the 21st Century. Washington, DC: National Academy Press. 2001
- Pasquali SK, Jacobs JP, Farber GK,e t al. Report of the National Heart, Lung, and Blood Institute Working Group: an integrated network for congenital heart disease research. Circulation 2016;133:1410-8.
- Chazal RA. Recognizing inevitable change and responding responsibly. J Am Coll Cardiol 2017;69:1637-9.
Keywords: Antineoplastic Combined Chemotherapy Protocols, Etoposide, Child, Continuity of Patient Care, Cytarabine, Heart Diseases, Patient-Centered Care, Registries, Heart Defects, Congenital
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