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Fontan to Transplant: Building Teams for Transition.
Dr. Schumacher is the medical director of the pediatric heart transplant program at the University of Michigan Congenital Heart Center at C.S. Mott Children’s Hospital. Throughout his career, Dr. Schumacher’s clinical and research efforts have focused on understanding and improving the outcomes of heart failure and transplantation in children with congenital heart disease with an emphasis on Fontan patients. He is a leader of ACTION’s Fontan subcommittee aimed at improving the quality of care for all Fontan patients needing heart failure treatment and advance cardiac therapies, and he is a member of multiple national working groups aimed at improving outcomes for all single ventricle patients.
The relationship between a single ventricle family and their cardiologist is strong. From my perspective as a cardiologist, each patient requires a tremendous amount of thought and effort, but each patient can also give me with a wonderful sense of accomplishment. Through this single ventricle journey, we cardiologists become attached and even bonded to our families. We go through so many events together – hospital admissions, clinic visits, inter-stage monitoring, nerve-wracking surgeries, challenging recoveries, and joyful discharges. In my experience, the bonds formed during this process are often amazing and powerful. After the Fontan, we get to be there with our families watching children grow up. For a pediatric cardiologist, this is the ultimate reward. The reality is, however, that the path ahead is far from clear. We now know that growing up as a Fontan is accompanied by new challenges for both families and cardiologists. As much as we don’t like to think about it, a large proportion of Fontan patients will eventually need to be seen by a heart failure specialist, and many will need a heart transplant. Single ventricle congenital heart disease is now the leading indication for pediatric heart transplant evaluation. Like it or not, the reality is that sometimes pediatric transplant cardiologists are going to be a part of the Fontan patient’s care team.
Unfortunately, the approach of building a Fontan care team that includes a transplant cardiologist is not widespread. More often, patients and families are “referred for transplant evaluation” and find themselves with a completely new cardiologist who is now overseeing all of their care. Suddenly, the cardiologist (and team) that has seen this patient through all the clinic visits, surgeries, and hospitalizations is no longer “in-charge” and all new people are making the decisions. Some patients even need to transition their care to a completely new center. To make matters even more challenging, all of this change occurs at a time when anxiety about patient health is extremely high. As a pediatric heart failure and transplant specialist, I know from discussions with many patients that this transition can be a jolting and traumatic experience.
Why does this happen? It probably stems from many causes. Given the strong bonds they have, longtime cardiologists understandably don’t want to give up care of their patient so they delay their referral. Similarly, patients and families (appropriately) don’t want to leave their cardiologist, and they may not even understand that heart failure can occur after Fontan or don’t want to acknowledge that possibility. Finally, in our field, there are no formal recommendations for when to refer a Fontan for heart failure consultation. General cardiologists are left to decide on their own without guidance about what an appropriate Fontan heart failure consult is. This is a gap in our field that needs to be filled because a sudden transition in patient care is not the way it has to be. Early consultation from a heart failure/transplant expert would allow us to build Fontan care teams and eliminate the jolting change in providers.
ACTION (Advanced Cardiac Therapies Improving Outcomes Network) is a collaborative group of pediatric heart failure and transplant cardiologists and cardiac surgeons who are working to improve the quality of care that pediatric heart failure patients receive. When ACTION surveyed heart failure providers, a large majority wished that Fontan patients were referred earlier than they typically are. When we explored this finding, there was a clear desire for the patient and family, the primary cardiologist, and the heart failure/transplant cardiologist to be a decision-making care team prior to needing a transplant. Early referral of a Fontan patient for consultation from a heart failure cardiologist would allow the creation of this Fontan advanced care team. The heart failure cardiologist’s perspective and insights, including issues specific to potential future transplant, could be paired with the primary cardiologist and family’s experiences to collaboratively structure medical care plans for the patient. I strongly believe this could improve outcomes for patients. And should the time ever arrive that heart transplant is indicated, the patient and family wouldn’t suddenly be meeting a completely new team – that relationship is already established.
So how do we make this happen? ACTION is building a set of Fontan-patient-specific reasons that should prompt consideration of a referral to a pediatric heart failure specialist. These are based on the experiences and challenges that we have had with Fontan patients undergoing heart transplant. They allow us to meet patients before transplant is urgently needed (or even worse, before a patient becomes too sick for transplant). It will give us time to treat different types of Fontan failure and insure that a patient is as healthy as possible prior to undergoing transplant. It is our hope that by clearly stating these reasons, we will improve the timeliness of patient referrals, improve outcomes, allow the formation of a collaborative care teams, and eliminate the abrupt transfer of care that can be so difficult for both patients and providers. We welcome feedback and insights from patients and families as this effort moves forward. We all share the same goal – the highest possible quality of life for our children.
HLHS Collaborative: September's Action Period Call
After a two month hiatus for centers to regroup with their quality improvement teams, the Action Period calls resumed this week. Discussion revolved around valuable work which continued over the summer months and important preparations for the Fall Learning Session.
The calls began with a review of data (mortaility and daily interstage weight gain) which is driving the current improvement work within the collaborative. Following data discussions, parent travel scholarships were announced to collaborative members, followed by an excellent discussion regarding how centers are funding parents to join them at the Learning Session. A number of centers identified local charities or non-profit groups that assisted in funding; others were able to emphasize to the powers that be the importance of parent involvement and secured funds through their hospital. Happily, more and more hospitals are recognizing the value parents can provide and it is becoming much more commonplace to fund parent partners to attend the Learning Sessions.
Advocate Children’s Hospital uses a combination of the above funding methods and selected parents who demonstrated commitment to their local group. If you're interested in the collaborative and quality improvement work, parents suggest you get involved with your local hospital - either on a parent advisory council, directly with your cardiac center's quality improvement team, or spark a conversation with your child's cardiologist expressing your interest in becoming more involved with NPC-QIC.
After a creative funding discussion, the call shifted toward the Transparency Workgroup. The workgoup recommended to centers that the Collaborative begin sharing collective performance measures on the NPC-QIC website (these measures represent combined data from all the centers in the collaborative and do not represent any one center). The workgroup brainstormed and created an infographic to highlight the Collaborative's progress to date. Some of the data points included in the infographic are:
number of patients in the registry
mortality rate (expressed as survival)
growth rates
readmission rates
parent engagement
who are collaborative members
The Transparency Workgroup is excited to reveal the infographic (once beautified by graphic designers) in the coming weeks. Stay Tuned!
September's Action Period call ended with a Learning Session preview and "homework" for cardiac teams prior to attending in November. We'll just say, the Learning Session will be engaging - for both parents and clinicians - and a lot of good information will be shared and discussed.
If you have the ability to attend the upcoming Learning Session in Cincinnati (November 7-8), we'd love to see you there. To register for the Learning Session as a parent, please visit: http://events.r20.constantcontact.com/register/event?oeidk=a07e9kkxcx92230dff1&llr=kdgqiilab
If you're not able to attend, keep an eye on social media where Sisters by Heart, parents, and clinicians will be updating on the events of each day! Get Twitter updates using #NPCQICLS and Facebook updates at Sisters by Heart and HLHS Parent Advisory Page.
