Healthcare needs of adults with congenital heart disease: Study of the patient perspective

BACKGROUND:: More than 90% of infants born with congenital heart disease reach adulthood. International medical recommendations outline patient care needs in an effort to optimize patient health. There are, however, limited data focusing on the patient perspective. OBJECTIVES:: This study investigated adult congenital heart disease patient-reported (1) barriers to medical care, (2) healthcare behaviors, and (3) concerns regarding medical, psychosocial, and lifestyle matters. METHODS:: In this cross-sectional study, a questionnaire was distributed to all patients who attended a patient education conference. RESULTS:: There were 123 adult congenital heart disease participants (58% female; mean age, 37 [SD, 13] years). The most common self-reported cardiac diagnoses were tetralogy of Fallot and transposition of the great arteries. Most patients did not report transportation or financial barriers to care, but did report the following: not wanting further surgery even if it was recommended (18%), not liking to think or talk about one's heart (17%), and not understanding doctors' information; 8% of patients inaccurately considered themselves to be "cured." With regard to healthcare behaviors, more than 80% of patients reported annual family physician and dentist visits, but 34% of patients were unaware when to seek urgent medical attention. Patients reported moderate to extreme concern about the following medical topics: heart rhythm problems (82%), infections (74%), and understanding treatment options (71%). Patients most often reported moderate to extreme concern about the following lifestyle and psychosocial topics: physical activity (77%), insurance (72%), assuming increased health responsibility (73%), diet (71%), mental health (60%), and death and dying (57%). CONCLUSIONS:: This study provides important information about 3 specific areas. First, there are potential barriers to care beyond financial and transportation challenges. Second, many patients require education regarding when to seek urgent medical attention. Third, the concerns of this patient population are not limited to medical information. A patient-centered educational program is recommended.