This multi-center study seeks to improve care delivery and long-term outcomes for adults with congenital heart disease, and to improve subsequent care and outcomes study designs.
Aims : The project specifically aims: (1) to determine the prevalence of lapses in specialized congenital heart disease care preceding new patient visits to an adult congenital heart disease (ACHD) center and to identify barriers to care;and (2) to assess the impact of a targeted educational intervention on disease knowledge and views regarding active participation in future ACHD-specific studies. Background: With advances in pediatric congenital heart disease care and >85% survival to adulthood, the number of adults with CHD in the United States (now estimated at approximately 1 million people) is growing. Many adult patients, however, still suffer lapses in cardiac care. The lapses have been correlated with adverse outcomes. Preliminary data shows that the reason for a lapse in care frequently involves poor patient education about their condition and the need for follow-up. A partnership between the Adult Congenital Heart Association (ACHA), a national patient organization, and the Alliance of Adult Research in Congenital Cardiology (AARCC), a multi-center research group, proposes a novel initiative to identify factors affecting lapses in care and to study the effectiveness of patient-directed educational efforts. Methods: The subjects in this prospective cohort study will be recruited from the group of new patients seen at ten established ACHD centers over a 15 month period. Participating subjects will complete a standardized questionnaire addressing demographic information, access to care, congenital heart disease information and participation in research. Physicians will review the questionnaire with each patient, and provide a personal health passport and information regarding the ACHA website educational resources. Three months after the initial visit, a follow-up questionnaire repeating the knowledge and research participation sections, and adding a section on educational resource utility will be sent to the subject. Each ACHD center will securely store raw questionnaire data, while a centralized ACHA database will store de-identified data from all centers. Descriptive statistics will characterize the prevalence of a lapse in care, underlying reasons, duration, age of onset, and age at resumption of care. The possible impact of the directed educational intervention on knowledge and attitudes towards research will be assessed with a comparison of baseline and follow-up questionnaires.
| Valente, Anne Marie; Landzberg, Michael J; Gianola, Ann et al. (2013) Improving heart disease knowledge and research participation in adults with congenital heart disease (the Health, Education and Access Research Trial: HEART-ACHD). Int J Cardiol 168:3236-40 |
| Gurvitz, Michelle; Valente, Anne Marie; Broberg, Craig et al. (2013) Prevalence and predictors of gaps in care among adult congenital heart disease patients: HEART-ACHD (The Health, Education, and Access Research Trial). J Am Coll Cardiol 61:2180-4 |
