Clinical profile of the adolescent/adult Fontan survivor.
OBJECTIVE
The 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.


METHODS
A descriptive, cross-sectional design was used.


METHODS
The study was performed in outpatient adult and pediatric cardiology clinics in university-affiliated and private practice offices.


METHODS
Fifty-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.


METHODS
Demographic 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.


RESULTS
The 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%).


CONCLUSIONS
Fontan 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.
School of Nursing, University of California, CA, USA. npike@sonnet.ucla.edu
Nancy A
NA
Pike
Lorraine S
LS
Evangelista
Lynn V
LV
Doering
Deborah
D
Koniak-Griffin
Alan B
AB
Lewis
John S
JS
Child
D000293:Adolescent; D000328:Adult; D003430:Cross-Sectional Studies; D004644:Emotions; D005260:Female; D018729:Fontan Procedure / Q000009:adverse effects; D006330:Heart Defects, Congenital / Q000150:complications / Q000503:physiopathology / Q000523:psychology / Q000601:surgery*; D006801:Humans; D015141:Los Angeles; D008297:Male; D008603:Mental Health; D008875:Middle Aged; D011788:Quality of Life; D012189:Retrospective Studies; D018570:Risk Assessment; D012307:Risk Factors; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology; D013997:Time Factors; D016896:Treatment Outcome; D055815:Young Adult
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