Maggie's Visits Chicago: A Recap of the 3rd Annual 3rd year attending FON and NPC QIC Conference

/

2023 was my 3rd year attending the FON and NPC QIC Conference, but it was still just as intimidating as the first year. Surrounded by some of the leading medical professionals in pediatric cardiology as well as seasoned parents who have been part of this collaborative far longer than I and CHD patients who understand the importance of conferences like this on a level that I never will is likely to always be intimidating, to say the least. Due to my fear of airports, I loaded my car with my luggage and snacks to make the 7 hour drive to Chicago. Despite my nerves, excitement and anticipation were at the forefront of my mind as I embarked on my journey. Though, I will never feel prepared enough for a conference of this magnitude, I was still experienced enough to be surprised by the depth of information and surprises that emerged at this year’s conference.

So what is the FON and NPC QIC Fall Learning Session? FON stands for Fontan Outcomes Network and is a learning network that utilizes a registry to collect data over the lifespan of patients with a Fontan heart in order to promote research and quality improvement. The NPC QIC is the National Pediatric Cardiology Quality Improvement Collaborative. In laymen’s terms these networks bring providers together with patients and parents to engage and encourage research and quality improvement. As both networks have similar if not the same missions, they are in the process of merging into one network. Thus far, they have established an aspirational timeline to achieve this goal and have begun the process of initiating community building and engagement. They have also created lifespan data bridge workgroups with a goal to begin implementation by 2024.

One of the chief functions of both collaboratives, which will continue as they merge, is identifying the causes of variations at the center level. While common causes are inherent in the system and occur all of the time, their data collection allows them to identify and target special cause variation. Examples of the this are: different operational definitions of a measure, different sampling or measurement methods, a case-mix of patients in different subgroups, changes in personnel, changes in staffing, unusual volume whether it be low or high, different equipment, and equipment malfunctions. This is an important variable to determine as it helps care centers establish necessary changes to improve the quality of life as well as mortality rates. As a heart parent, I can attest that no care center or even physicians at the same care center will always agree on the best course of action for a patient. If you have 6 different cardiologists look at the exact same echocardiogram, it is likely that you will receive 6 different interpretations. Because of this, identifying these differentiations can help facilitate data sharing as well as coming to a consensus which makes the entire process less stressful and confusing for patients and families.

An integral part of collecting this information is data transparency. One of the medical centers presenting at the conference this year highlighted the importance of transparency by sharing about their experience with improving feeding at the care center level. I was especially excited about this session of the conference as my daughter, Evie, has struggled with oral feeding for the majority of her life. In fact, she had a feeding tube longer than she has been without one thus far. Part of the anxiety that came with this revolved around feeling like I didn’t have much a voice regarding her feeding concerns. After, who was I to disagree with such highly educated and experienced medical professionals? Kansas City Medical Center recognized this need and concern in their patients’ families and by utilizing parent engagement for tube weaning, they were able to acknowledge some of the most prevalent parent concerns regarding feeding during the first year after birth. Issues such as a lack of consistency and communication between providers, not listening to parents and their point of view as well as could be, and not starting at birth with oral feeding were at the forefront. Due to the information that they gathered, Kansas City Medical Center implemented the following changes: a focus on short term tube management and weaning, creation of a pre-operative feeding protocol, and education for FON and NPC QIC Blog the entire medical team. As a result, rates of pre-operative feeding increased from 39.5% to 75% while rates of necrotizing enterocolitis (NEC) did NOT increase as was the concern. Today, Kansas City Medical Center regularly utilizes listening to parent feedback, ensuring someone owns the feeding experience, focusing on positive feeding experiences, creating a structured hand off, and increasing communication with nutritionists via TEAMS in their daily practices.

Another area of focus this year at the conference was centered around physical activity and exercise. Three of the categories focused on were: exercise and Fontan wellness, reviews and statements discussing Fontan exercise, and new research that identifies specific exercises beneficial and safe for Fontan patients. Whereas most often the concern is ensuring that children aren’t required to do more than their heart anatomy can handle, I felt like I was on the opposite end of the spectrum. Evie, quite literally, won’t stop unless she’s sick. I often refer to her as my “heartergizer bunny” because she simply keeps going even if she shouldn’t. Still, I was fascinated by what was being discussed because it gave me insight into what she may experience as she gets older but also because it provided me with the tools I will need to establish an appropriate plan for her physical needs moving forward. Additionally, as the presenters broke things down into phases and identified common barriers that CHD children will face (i.e. meeting the patients where they are instead of hitting specific milestones, knowing the difference between normal responses versus concerning responses, addressing exercise testing anxiety, etc.), concerns are addressed at a structured and developmental level as opposed to what is “expected”. After all, when do any of our children respond in a way that is expected?

Much of these measures are possible due to the FON Registry. Launched in 2021 with only an initial 12 sights, it now boasts over 30 centers with 6 new ones added in 2023 alone. 1000 patients are currently enrolled and registered in the FON Registry. This data collection directly affects all CHD patients and families by tracking outcomes, liver function, and ensuring reliable assessment and surveillance of patients. In fact, a direct result of the registry is the Liver Health Project which strives to improve reliable liver health education, surveillance, and management of individuals with Fontan circulation. As the parent of a child with Fontan circulation, it provided me with a modicum of comfort to know that the pediatric cardiology medical community is not only aware but also actively researching liver concerns in CHD children. This serves as a reminder and emphasizes their mission of being family and patient focused.

Perhaps most importantly, the FON and NPC QIC conference focused on the emotional well being of patients and families, not only during hospital stays but throughout the lifespan as well. As parents, one of our biggest concerns is the mental health of our children. Their physical and medical needs receive much attention and focus, but our emotional concerns can often feel like they take a back burner. When the collaborative polled the medical professionals involved, 57% reported high levels of interest in the emotional and mental health needs of children with chronic medical conditions. Of that 57%, 63% stated that they felt that addressing these concerns were the responsibility of their subspecialty but a mere 20% reported feeling competent in the skills necessary to ensure the mental health of their patients.

Because of this, the collaborative as a whole encourages that clinicians utilize strategies to initiate and maintain the dialogue surrounding such an important aspect of quality of life for patients and families.

These include: recognizing that you don’t have to be a mental health professional to be an advocate, finding your own voice and using language that is comfortable, encouraging patients and families to let clinicians know how they’re doing even if not asked, asking open ended questions (i.e. what are your questions or concerns instead of do you have any questions or concerns), not telling patients and families not to worry about something or that you know how they feel, asking follow up questions, acknowledging vulnerability, providing realistic expectations, acknowledging psychological distress but not allowing it to dictate diagnosis or treatment, etc. The focus being placed on this issue was especially encouraging for me as I’m sure I’m not alone in the sentiment that often times, simply having someone, anyone, even if not a medical professional, ask how you’re doing and actually being invested in the answer is huge anxiety reliever and validates how the patient or parent is feeling.

Ultimately, I felt a keen sense of fulfillment and engagement at this year's conference. I felt that so many of the topics discussed applied to me on a personal level but also to the Kentucky families that Kerrington’s Heart strives to serve. The level of engagement from parents and clinicians was encouraging, but getting to meet and hear from CHD patients was the highlight and truly inspirational. I left the conference with not only the knowledge that I had absorbed but a new understanding of the journeys of others.