Health-Related Quality of Life in Children and Adolescents after Invasive Treatment for Congenital Heart Disease

• Published in: Quality of life research 2006-05, Vol.15 (4), p.663-673
• Main Authors: Spijkerboer, A. W., Utens, E. M. W. J., De Koning, W. B., Bogers, A. J. J. C., Helbing, W. A., Verhulst, F. C.
• Format: Article
• Language: English
• Subjects: Adolescent; Adolescents; Age Factors; Atrial heart septal defects; Cardiovascular disease; Child; Children; Clinical and Policy Applications; Cognition; Congenital diseases; Congenital heart defects; Emotional distress; Emotions; Female; Health status; Heart Defects, Congenital - physiopathology; Heart Defects, Congenital - psychology; Heart Defects, Congenital - surgery; Humans; Interpersonal Relations; Male; Motor ability; Netherlands; Pain; Parents; Parents - psychology; Personal Autonomy; Physical symptoms; Postoperative Period; Psychometrics; Quality of Life; Sickness Impact Profile; Surveys and Questionnaires; Treatment Outcome
• ISSN: 0962-9343; 1573-2649
• DOI: 10.1007/s11136-005-3692-z

Since the 1980s treatment techniques for congenital heart disease (ConHD) have gradually evolved. Therefore, actual information on the outcomes, including quality of life is required. Health-related quality of life was assessed long-term in four diagnostic groups of children, who underwent invasive treatment for ConHD between 1990 and 1995. The scores on the TNO-AZL Child Quality of Life Questionnaire (TACQOL) of both children with ConHD and their parents were compared with those of a same-aged reference group. The total sample of ConHD children (n = 113, 8-15 years old) obtained significantly lower mean scores on motor functioning, cognitive functioning, and positive emotional functioning than reference peers, reflecting an experience of poorer functioning. ConHD children, aged 8—11 years, obtained lower mean scores on 5 of the 7 TACQOL scales than reference peers. They also had a lower score on positive emotional functioning than 12- to 15-year-old ConHD children. The total sample of ConHD children obtained lower outcomes compared to their parents on 4 of the 7 TACQOL scales. No significant differences were found in health-related quality of life between ConHD boys and girls, neither between different diagnostic groups. Overall, this sample of recently treated ConHD children showed a worse health-related quality of life compared to reference groups. These findings deserve further attention.