Background: Children with heart disease experience increased risk for insufficient school healthcare support due to traditional care coordination limitations, school health plan deficiencies, parent and school knowledge gaps, and the absence of standards.  Poor school health support adversely affects child quality of life and school performance. There is a critical need for new care models that reduce these risks to influence better outcomes for children with heart disease.  This study assessed the comprehensiveness and feasibility of using a new tool to provide healthcare information to schools created by the Educational Achievement Partnership Program (EAPP) at Children’s Wisconsin.

Methods: 74 cardiac patients were enrolled from January 2019 – June 2020 and assessed use of the new tool: “Medically Informed School Healthcare Management And Recommended Treatment Plan” (MI-SMART Plan).  Once enrolled, pre-intervention school health plans were collected, a comprehensive assessment was conducted, and a MI-SMART Plan was written by EAPP team members and presented to school staff for each patient.  Post-intervention health plans were collected from the same 74 patients and compared with pre-intervention plans to reveal changes based on EAPP recommendations.  The IRB approved this study and informed consent was obtained for all study participants.

Results: Participants were an average age of 9.5 years (range 3.0-16.1) and had the following characteristics: 37% single ventricle anatomy, 58% male, and 76% Caucasian.  50% of participants had pre-intervention school health plans, with an average of 6 domains per plan out of 20 domains assessed.  The most common pre-intervention health plan domains were diagnoses (45%), symptom management guidelines (39%), and medications (34%).  The EAPP provided MI-SMART Plan recommendations for all 74 participants, based on their unique health conditions and school support needs, with an average of 12 domains per plan.  

95% of participants had post-intervention school health plans.  90% of the post-intervention school health plans were expanded with an average of 7 new/modified domains per plan.  Participants with pre-intervention health plans had an average of 6.2 domains added/expanded based on MI-SMART Plan recommendations.  Participants without pre-intervention health plans had post-intervention health plans with an average of 7.6 new domains included based on MI-SMART Plan recommendations.  The most common post-intervention domains changed based on MI-SMART Plan recommendations were description of diagnoses (86%), symptom management guidelines (80%), and diagnoses (78%).

Conclusion: While pediatric heart disease can be well-managed from a cardiac standpoint, there are many significant barriers to proper care management in a school setting, leaving these children at considerable risk for poor health at school, reduced school functioning, and increased absenteeism. Without medical training specific to a child’s particular illness, school staff may mismanage medical symptoms, underestimate health limitations, and overlook related educational deficits.  The EAPP’s novel MI-SMART Plan presents a comprehensive and feasible method for relaying healthcare information to school staff and enhancing school health plans for cardiac patients.  Subjective feedback from school staff who received MI-SMART Plans was very positive, with many requesting this type of healthcare information for children with other types of medical conditions as well. Follow-up is needed to investigate methods to increase the availability of MI-SMART Plans to larger populations of school-aged cardiac patients and children with other chronic illnesses.