Disease-related difficulties and satisfaction with level of knowledge in adults with mild or complex congenital heart disease.
OBJECTIVE
To evaluate difficulties in daily life, and satisfaction with level of knowledge about their disease, in patients with congenital cardiac disease in order to improve counselling.


METHODS
A self-administered questionnaire was completed by 80 patients with mild, and 76 with complex, congenital cardiac disease. They were aged from 17 to 32 years.


RESULTS
Even patients with only mild malformations experienced difficulties related to their disease, but being found in only 11%, these were significantly less than those uncovered in 87% of those with complex disease (p < 0.001). Those patients with complex malformations frequently felt restricted in choices because of their disease in areas such as sport (59%), employment (51%), and education (34%). Other difficulties reported were: paying a higher premium for life insurance (29%), having to give up on a sport (28%), and being excluded from a job (18%). Depending on the item, between one-fifth and two-thirds of participants reported gaps in knowledge, most frequently for "causes of congenital cardiac disease", "future consequences", and "family planning". For 53% of those with mild anomalies, and 93% of severely affected patients, the cardiologist is the most important source of information.


CONCLUSIONS
A minority of adults with mild, and a majority of those with complex congenital cardiac disease report difficulties in daily life. A substantial number of these patients feel that they have an inadequate level of knowledge about their disease. Our results suggest the need for a specific programme of counselling.
D000203:Activities of Daily Living / Q000523:psychology*; D000293:Adolescent; D000328:Adult; D003376:Counseling / Q000706:statistics & numerical data*; D003430:Cross-Sectional Studies; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006331:Heart Diseases / Q000150:complications* / Q000151:congenital* / Q000523:psychology; D006801:Humans; D007255:Information Services / Q000706:statistics & numerical data; D008297:Male; D010353:Patient Education as Topic / Q000706:statistics & numerical data*; D017060:Patient Satisfaction / Q000706:statistics & numerical data*; D012720:Severity of Illness Index