Medical scientific information

KAMPHUIS M, Vogels T, Ottenkamp J, Verloove-Vanhorick P, Vliegen HW.
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.

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