Abstract 9422: Electronic Personal Health Record Use in Congenital Heart Disease Patients

Background: We evaluated if providing congenital heart disease (CHD) patients (pts) with an electronic personal health record would improve medical knowledge, psychological adjustment to illness (PAIS), and satisfaction with medical care. Methods: Since 2/2011, 81 CHD pts > 15 years were enrolled in accounts on www.followmyheart.org (FMH). Using standardized surveys, medical knowledge and psychological adjustment were assessed prior to and 12 months after enrollment. Non-parametric testing was used to compare baseline and post-enrollment responses. Results: Mean age of pts (44% M) was 28 + 10 years. Ethnic breakdown included: 72% Caucasian, 17% African American, 5% Hispanic, and 6% other. Disease severity ranged from mild (24%), moderate (43%), to severe (33%); moderate to severe disease occurred more frequently in older patients (p<.05). Half of pts reported regular FMH use and two-thirds found the site helpful. There were no differences between FMH users and non-users in gender, race, disease complexity or education level. 23% had lapses in care >3 years and 6% had lapses >10 years. Mean age at first lapse was 19 years due to insurance issues (63%), relocation (56%), and lack of symptoms (50%). Pre-enrollment, few pts were able to identify symptoms of endocarditis (10%) and arrhythmia (38%). Females were unaware of the risks of CHD on contraceptive choices (55%) and pregnancy (48%). Pre-enrollment PAIS analyses revealed worse adjustment with increasing age in the sub-scores of domestic (p<0.005), sexual (p <0.05), social environmental (p<0.005), and psychological distress (p< 0.001) and total T-score (p<0.005). One year post-enrollment, data was available in 49% of eligible patients. More pts were able to identify symptoms of endocarditis (23%) and arrhythmia (44%). Pts reported increased satisfaction with medical care and increased confidence in obtaining medical care without undue financial hardship (p=0.05). There were no statistical differences in PAIS score. FMH use increased with age. Conclusions: Use of FMH by CHD pts resulted in improved knowledge of cardiac complications and improved satisfaction with medical care. Longer follow-up is needed to assess the utility of FMH in decreasing lapses in care.