Shaping The Future Of ACHD

The Columbus Ohio Adult Congenital Heart Disease (COACH) Program is helping to shape the future of ACHD not only locally in Columbus, but throughout Ohio, the Midwest and nationally.  In Columbus, we have developed one of the most comprehensive service lines for ACHD anywhere in the US. Combining the nationally recognized faculty, world class diagnostic testing and therapies, and state of the art facilities at two US News and World Report leading institutions; Nationwide Children’s Hospital and The Ohio State University (OSU), the COACH Program is leading the way in ACHD clinical care, education and research. By fully utilizing and integrating into both hospital systems, which is unique for US ACHD programs, we are able to provide ACHD care with a patient centered strategy. This allows unlimited options for ACHD care that is driven by what is best for the individual patient as opposed to trying to fit the patient into a health care system not prepared for ACHD. This forward thinking approach is utilized for each and every ACHD patient and provides the basis for our outstanding ACHD outcomes.

We begin at Nationwide Children's with our Transition Education Program, one of the only programs in the US. Our ACHD team housed at Nationwide Children's has developed, along with the Pediatric Heart Center faculty, a robust, broad-based education program for all CHD patients starting at age 15 and continuing until they transition to the COACH program. With over 300 annual visits, patients meet our ACHD nurses, and from this we develop a relationship with the patient and parents early in the life span of CHD care for eventual ACHD transition. The education program reviews aspects of life-long CHD care, insurance issues, medication compliance, pregnancy and family planning, work-related considerations, and psychosocial needs. Then, when the time comes for active transition to ACHD care, the process is smoother, less traumatic and minimizes the current national epidemic of the lost to care.  The ACHD fellow will learn about transition and the education process as part of their training to then carry with them as an ACHD Professional.

Once patients transition to us, or return to care from outside referrals, our team is prepared to evaluate and provide care in one of our many ACHD clinics throughout the week. We hold ACHD clinics each day of the week at either Nationwide Children's or OSU Ross Heart Hospital and the ACHD fellow attends clinic with the ACHD team 1- 2 days per week depending on the rotation. With a clinic staffed by ACHD trained physicians, ACHD advanced practice nurses and RNs, as well as psychologists, social workers, and nutritionist/dietician, the experience for the ACHD fellow is a true educational endeavor.

Once patients are referred for further testing and evaluation, we individualize the approach. As example, our cardiac MRI program at OSU is one the leading imaging labs in the country directed by Subha Raman, MD and controlled by the cardiology division. We have developed lesion specific protocols for ACHD and have faculty trained in ACHD to guide the examination and interpretation. With over 400 scans/year, and specific rotations for the ACHD fellow, comprehension and knowledge in ACHD MRI/CT will clearly improve with greater ability to understand protocols and interpret images.  As well, we individualize our approach to CHD interventional cardiac catheterization.  Our Hybrid interventional catheterization laboratories at Nationwide Children's, directed by John Cheatham, MD provide an environment unlike any in the country. The specific Hybrid labs, first in the US, are the basis for our outstanding outcomes in ACHD interventional procedures. Dr Cheatham is one of only a handful of highly skilled, experienced operators in the US who have developed and performed procedures only a few places in the world have successfully attempted for ACHD patients. Including transcatheter valve therapy, device closure techniques, covered stent procedures and Hybrid approaches to complex patients, the experience for the ACHD fellow both in the lab and through observation is essential for ACHD training and career development.

We are spreading our expertise with ACHD outreach clinics. An essential part of our ACHD care is to provide services to local communities that are hours away from our ACHD center.  Therefore, we have developed monthly outreach ACHD clinics at several Ohio locations, stretching West to Dayton, North to Mansfield, and Southeast to Ironton with plans for other locations in the near future. The ACHD fellow participates in outreach with the ACHD team and experiences real community based ACHD care.

We have developed and promote ACHD patient education. With one of the only patient education lecture series in the US, we provide bimonthly ACHD educational lectures to our ACHD patients and families.  Over the past 5 years we have delivered educational lectures along with dinner to our patients on various general topics such as; Diet and Exercise, How to Manage Heart Failure at Home, Psychological Support for ACHD Patients, Social Service Needs for ACHD Patient, Electrical Issues Pacemakers and Arrhythmias, Interventional Cardiac Catheterization for ACHD and Pregnancy and Heart Disease; and also lesion specific lectures including Tetralogy of Fallot, Coarctation of the Aorta, Transposition of the Great Arteries, and Single Ventricle/Fontan. The ACHD fellow participates by helping to provide some of the lectures for this series.

COACH is leading the way in ACHD research. Our ACHD program has focused on developing and implementing important clinical research in several areas. The ACHD fellow is an integral part of the research team, participating in their own directed projects as well as projects initiated and performed by the ACHD team. Book chapters, peer review articles, review papers, local presentations, and national presentations are an expected part of the ACHD fellowship. We help provide the research support with dedicated ACHD research coordinator, IRB and database personnel so the fellow can focus on the research. See the fellow page for research accomplishments of our ACHD fellows. We also hold a T32 NIH Training Grant in CHD and currently Jamie Jackson, PhD is performing Psychology Research in ACHD as part of this training grant.

We are helping to Shape the ACHD National Agenda. Members of the COACH team have initiated, developed and accomplished several goals within the National Agenda for US ACHD care.  Recent and ongoing activities include:

Curt J Daniels, MD

  • President, International Society for ACHD (ISACHD)
  • Chair, ISACHD Global Health Working Group
  • Chair, Adult Congenital Heart Association (ACHA) Professional Affairs Committee
  • Co-Chair, ACHA Medical Advisory Board
  • Chair, ACHA US ACHD Program Accreditation Committee
  • Co-Chair, ABIM Petition for ACHD Subspecialty Certification
  • Co-Chair, American College of Cardiology (ACC) ACHD Working Group
  • Chair, ACC Quality Metrics Working Group
  • Chair, ACC Transition of Care Working Group
  • Council Member, ACC Adult Congenital and Pediatric Cardiology Council
  • Member, Centers for Disease Control (CDC) Expert Panel for ACHD

Stephen Crumb, APN, DNP

  • American College of Cardiology
    • Training and Workforce Committee
  • Adult Congenital Heart Association
    • Past Co-Chair, Research Committee
    • Medical Advisory Board
  • Co-Chair, Adult Congenital Cardiac Care Associates Research Network

Jenne Hickey, APN

  • Adult Congenital Heart Association
    • Board of Directors
    • Chair, Congenital Heart Walk

As an ACHD team, we have focused on Advocacy for ACHD, participating in CHD Lobby Day in Washington DC on an annual basis. This effort led to Congressional passage of the Congenital Heart Futures Act in 2009 to support NIH funding and CDC surveillance for CHD.  The past few years, our ACHD fellows have traveled to DC with us and participated in meeting senators and congressmen and women, lobbying for ACHD.

Therefore, as a program, COACH is working to provide the best care locally and create an impact nationally for ACHD care. As an ACHD fellow with our program you will have opportunities unlike anywhere else in the US to develop your ability to not only care for ACHD patients but understand how to run an ACHD program and participate on several levels with education, research and advocacy.