Lori A. Erickson, PhD, RN, MSN, CPNP-PC
Manager, Cardiac High Acuity Monitoring Program (CHAMP) Clinical Services; Coordinator, Advanced Practice Registered Nursing (APRN) Program; Adjunct Graduate Faculty, University of Missouri-Kansas City School of Nursing and Health Studies
Full BiographyJami N. Gross-Toalson, PhD
Director, Thrive Program, Cardiology; Director, Heart Center Well Being Program; Associate Professor of Pediatrics, University of Missouri-Kansas City School of Medicine
Full BiographyTwo Children’s Mercy researchers - Lori Erickson, PhD, MSHCM, MSN, NEA-BC, FAHA, CPNP-PC, Remote Health Solutions, and Jami N. Gross-Toalson, PhD, Heart Center, Developmental & Behavioral Health – are first and second authors on an American Heart Association Scientific Statement.
The statement, “Update on Education for Families and Patients With Pediatric Heart Disease: A Focus on Technological Advancements, Procedures, and Transitions of Care: A Scientific Statement From the American Heart Association,” was created by nurses and the complex care teams that have worked with kids and their families with pediatric heart disease. It shares insights from a decade of emerging research on best practices for patient and family education, from preparing for procedures to navigating transitions of care, interstage monitoring, and the growing role of technology. They also highlight the importance of family-centered care, supporting patient and caregiver understanding across the care continuum, and the expanding interdisciplinary team involved in supporting patients, including nurses, physicians, psychologists, child life specialists, therapists, and social workers.
“Dr. Gross-Toalson and I have always had similar clinical practice with a focus on family centered and trauma informed care. When I was planning this Scientific Statement, I wanted to ensure that was added to this updated publication,” said Dr. Erickson.
The original Statement was created in 2003. The team began drafting the updated Statement in early 2024. After completing their work and incorporating revisions, it was approved by the American Heart Association’s scientific review process in October 2025 and subsequently published online in March 2026.
Why is it significant
American Heart Association Statements are highly cited in peer reviewed literature, grant submissions, and policy development and are often used in grant significance support as expert-based consensus of current cardiac literature.
“Building a framework for cardiology providers to guide their clinical practice is another key factor in the importance of this paper. Because cardiology is appropriately focused on using evidence-based medicine while considering individual needs, it was important to add this resource for education and wellbeing using the same evidence-based framework,” said Dr. Gross-Toalson. “In addition, families often reference the importance of communication with their medical teams as a key factor in their adjustment to cardiac conditions, so simplifying and standardizing how pediatric heart providers address early education and communication is key to long-term adjustment.”
As the two explain, the Statement authors did not simply provide recommendations for basic pediatric cardiac education, but rather focused on the individual needs of patients and families who may learn or process information differently based on a variety of factors.
Dr. Erickson, chair of the writing group, provides more information in this AHA Science YouTube video.
Top 3 summary takeaways
- Education for pediatric heart disease (pedsHD) must be continuous, inclusive, and family-centered—beginning at diagnosis and extending through adolescence and transition to adult care.
- More research is needed on the effectiveness of digital tools, education for neurodiverse populations and those with language barriers, and strategies to improve recall and comprehension during emotionally charged encounters.
- Anticipatory guidance and proactive education reduce complications, readmissions, and caregiver stress—ultimately improving quality of life and clinical outcomes for children with heart disease.
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