Hostname: page-component-8448b6f56d-42gr6 Total loading time: 0 Render date: 2024-04-23T10:59:17.194Z Has data issue: false hasContentIssue false

Disease-related difficulties and satisfaction with level of knowledge in adults with mild or complex congenital heart disease

Published online by Cambridge University Press:  15 August 2006

Mascha Kamphuis
Affiliation:
Leiden University Medical Centre, Leiden, The Netherlands Department of Paediatric Cardiology, Leiden, The Netherlands Department of Cardiology, Leiden, The Netherlands TNO Prevention and Health, Leiden, The Netherlands
S. Pauline Verloove-Vanhorick
Affiliation:
Leiden University Medical Centre, Leiden, The Netherlands Department of Paediatrics, Leiden, The Netherlands TNO Prevention and Health, Leiden, The Netherlands
Ton Vogels
Affiliation:
TNO Prevention and Health, Leiden, The Netherlands
Jaap Ottenkamp
Affiliation:
Leiden University Medical Centre, Leiden, The Netherlands Department of Paediatric Cardiology, Leiden, The Netherlands Emma Children's Hospital, AMC, Amsterdam, The Netherlands
Hubert W. Vliegen
Affiliation:
Leiden University Medical Centre, Leiden, The Netherlands Department of Cardiology, Leiden, The Netherlands

Abstract

Objectives: 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.

Type
Original Article
Copyright
2002 Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)