STATUS IN ADULTS WITH CONGENITAL HEART DISEASE
KAMPHUIS M, Vogels T, Ottenkamp J, Verloove-Vanhorick P, Vliegen
Departments of Pediatric Cardiology and Cardiology, Leiden University
Medical Centre, and TNO Prevention and Health. Leiden, The Netherlands
Objective: The present study evaluates job status, career-related
problems, and job characteristics (e.g. work-related adaptations)
in adults (18-32 years) with congenital heart disease (CHD).
Methods: Seventy-six patients with previously operated complex
CHD were compared with 80 patients with minor CHD (all patients
randomly selected), using a mailed questionnaire.
Results: Excluding students, 69% of patients with complex
CHD had a paid job compared with 91% of patients with minor disease
(p=0.004, with correction for age, gender, and education). Of all
participants, 20 (17 with complex CHD) received disablement benefit.
Overall, 42 patients with complex CHD (55%) stated to have experienced
problems with career as a result of their disease (e.g. they felt
restricted in job choice, or had been excluded from a job), in contrast
to only 1 with minor disease.
At work, 48% of the patients with complex CHD experienced handicaps
for which job adaptations had been created (mainly mobility-related
handicaps) compared with 25% for patients with minor disease (p=0.01).
Specifically mentioned adaptations were: flexibility in working
hours, reduced time pressure demands, other working hours, and increased
freedom to organize one's work.
Conclusions: Although patients with complex congenital heart
disease are able to work, many of them experience problems and receive
disablement benefit. The availability of work adaptations though,
enables the majority to join the labor force. Therefore, career
counseling and more frequent utilization of job adjustments are
important to reduce working problems, and to prevent unemployment
and dependency on insurance benefits. Advising patients and employers
on these issues is an important task for the adult congenital cardiologist.