• Nancy A Pike, Lorraine S Evangelista, Lynn V Doering, Deborah Koniak-Griffin, Alan B Lewis, and John S Child.
• School of Nursing, University of California, CA, USA. npike@sonnet.ucla.edu
• Congenit Heart Dis. 2011 Jan 1; 6 (1): 9-17.

ObjectivesThe study aims to describe the clinical profile of the adult Fontan survivor and identify the worries, symptoms, and the impact of cardiac surveillance most commonly experienced.DesignA descriptive, cross-sectional design was used.SettingThe study was performed in outpatient adult and pediatric cardiology clinics in university-affiliated and private practice offices.PatientsFifty-four adolescent and adult patients with single ventricle congenital heart disease who have undergone the Fontan procedure participated in the study. The mean age was 26 ± 9 years with 52% female and 63% Caucasian.Outcome MeasuresDemographic and clinical data were obtained by a standard intake form and retrospective chart reviews. The Congenital Heart Disease TNO/AZL Adult Quality Of Life questionnaire was completed to assess worries, symptoms, and the impact of cardiac surveillance.ResultsThe majority were single (73%), employed or full-time students (93%), with health insurance (94%), had a single left ventricle (78%), the diagnosis of tricuspid atresia or double inlet left ventricle (59%), lateral tunnel Fontan type (44%), history of arrhythmias (76%), left ventricle ejection fraction percentage >50 (66%), oxygen saturations >90% (70%), frequent headaches (50%), scoliosis (22%), varicose veins, ascites, and liver cirrhosis (46%), normal body mass index (59%), and New York Heart Association class I (48%) and II-III (52%). Primary worries related to current health (83%), job/employment (69%), ability to work, (61%) and living independently (54%). The most bothersome symptoms were shortness of breath with ambulation (69%), dizziness (61%), and palpitations (61%).ConclusionsFontan survivors experience residua and sequelae from multiple surgical procedures and the natural disease course. Our results support the need for ongoing assessment of both physical symptoms and psychosocial concerns, and suggest the need for multiple risk factor intervention strategies that improve physical and emotional health in Fontan survivors.© 2011 Copyright the Authors. Congenital Heart Disease © 2011 Wiley Periodicals, Inc.

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