John, Anitha

Matthews, Anita

Messmer, Mindi

Nguyen, Nam Tran

Wevers, Marguerite

English

George Washington University: Health Sciences Research Commons (HSRC)

RESEARCH POSTER PRESENTATION TEMPLATE © 2019www.PosterPresentations.comWashington Adult Congenital Heart, Children’s National HospitalNam Tran Nguyen, BS; Mindi Messmer, MS; Anita Matthews, MS; Marguerite Wevers, RN;  Anitha John, MD, PHDMy Health My Heart;  Health Care Transition Program for Congenital Heart Disease Patients BACKGROUNDOBJECTIVESMETHODSRESULTSCONCLUSIONS AND FUTURE DIRECTIONSREFERENCES• Patients with congenital heart diseases (CHD) are at greater risk of incurring medical complications and neurocognitive deficits, but advancements in medical care have allowed greater quality of life and life expectancy1, 2• There are known factors associated with gaps in care, such as via patients not knowing the need for follow-up care, insurance issues, and reluctance to develop new physician relationships.3• Transitional care may lower the risk of loss to follow-up and poor outcomes in patients via consistent early interventions, but transitional care has not yet been standardized. (1) To identify individual barriers for a successful transition;(2) To improve knowledge and education about cardiac conditions and importance of transition;(3) To establish a pathway to create effective goals for patients and their families regarding tasks needed for successful transition. • This mode of transitional care offers participants in the program the opportunity to address specific goals through a telehealth format. • This intervention has identified gaps pertaining to medical knowledge, care coordination, and mental health at baseline• Long-term research is necessary to address the efficacy of this transitional care model and its impact on medical outcomes.1. Howell, Heather B et al. “Neurodevelopmental outcomes of children with congenital heart disease: A review.” Current problems in pediatric and adolescent health care vol. 49,10 (2019): 100685. doi: 10.1016/j.cppeds.2019.1006852. Scott, Michael, and Ashley E Neal. “Congenital Heart Disease.” Primary care vol. 48,3 (2021): 351-366. doi: 10.1016/j.pop.2021.04.0053. Goossens, Eva et al. “Are missed appointments in an outpatient clinic for adults with congenital heart disease the harbinger for care gaps?” European journal of cardiovascular nursing vol. 21,2 (2022): 127-134. doi:10.1093/eurjcn/zvab012Table 3: Mental HealthParticipants < 18 years oldNever Almost Never Sometimes Often Almost AlwaysI worried about what could happen to me70.2% 10.6% 10.6% 6.4% 2.1%I could not stop feeling sad 76.6% 17.0% 4.3% 2.1% 0.0%I felt lonely 78.7% 8.5% 10.6% 2.1% 0.0%It was hard for me to have fun 66.0% 17.0% 14.9% 2.1% 0.0%Participants > 18 years oldNever Almost Never Sometimes Often Almost AlwaysMy worries overwhelmed me 47.4% 5.3% 15.8% 21.1% 10.5%I felt depressed 52.6% 10.5% 10.5% 21.1% 5.3%EDUCATIONAL GOALS AND TOPICSDISCUSSIONTable 2: Care CoordinationParticipants < 18 years old Participants > 18 years oldYes, I know this I need to learn more Yes, I know this I need to learn moreI make my own medical appointments 45.0% 55.0%I know how to refill my medications 27.7% 72.3% 27.7% 72.3%I know how to contact my health insurance company with questions or concerns10.6% 89.4% 15.0% 85%Table 1: Medical KnowledgeParticipants < 18 years old Participants > 18 years oldYes, I know this I need to learn moreNot ApplicableYes, I know thisI need to learn moreNot ApplicableI can name and/or describe my heart condition51.1% 45.8% 2.1% 40.0% 60.0% 0.0%I can name and/or describe the cardiac surgeries or procedures that I have had29.8% 61.7% 8.5% 35.0% 65.0% 0.0%I take part in making choices about my healthcare51.1% 48.9% 51.1% 48.9%I know what Cardiac Symptoms Require more Urgent Medical Attention31.9% 66.0% 2.1% 45.0% 40.0% 15.0%Medical Knowledge• Understanding my diagnosis• Building a portable medical summary• Why are my medications important?• Endocarditis• Warfarin• Pacemaker Care• Exercise and ACHDCare Coordination• Advance directives• Obtaining and using health insurance• Working with your doctor during your visit• Requesting medication refills• How to find an adult doctorMental Health• How to find a therapist• Stress and anxiety explained• PTSD• Mindfulness-based stress reduction• Most participants (under 18 and over 18 years old) do not report adequate care coordination skills, such as the ability to refill medication or correspond with their health insurance companies.• Participants over the age of 18 years more often reportfeelings of depression and worries than participants under 18 years of age, possibly indicating a larger mental burden on CHD patients as they age.• A large percentage of patients have not yet achieved an adequate level of transition readiness.3381412Under 18 yearsof ageOver 18 yearsof ageMales at baselineFemales at baselinePARTICIPANT DEMOGRAPHICSPARTICIPANT-REPORTED HEART DISEASE DEMOGRAPHICS5 52152101592127812153320102 212 2131 131 10 03 3Atrial Septal DefectVentricular Septal DefectPatent Ductus ArteriosusAtrioventricular Septal DefectAortic Valve StenosisBicuspid Aortic ValveCoarctation of the AortaDoublet Outlet Right Ventricle (DORV)Ebstein AnomalyFontanHypoplastic Left Heart Sydnrome (HLHS)Pulmonary AtresiaPulmonary Valve StenosisSingle Ventricle/ Double Inlet Left Ventricle /FontanTetralogy of Fallot (TOF)Transposition of Great Arteries (TGA)Tricuspid AtresiaTruncus ArteriosusAnomalies of Great Veins or Pulmonary VeinsOtherDon't know/not sureUnder 18 years of age Over 18 years of age

My Health My Heart; Health Care Transition Program for Congenital Heart Disease Patients

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My Health My Heart; Health Care Transition Program for Congenital Heart Disease Patients

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