Health Related Quality of life after Corrective Surgery for Congenital Heart Disease

Abstract

After corrective surgery for congenital heart defects (CHD) many patients suffer from residual defects, some with reduced cardiorespiratory capacity and possible impairment of their health related quality of life (HRQoL). The aim of our study is to evaluate, how children after surgery for CHD rate their HRQoL.

Method: A standardised questionnaire deve­loped for self-rating in children between 8 and 18 years and dealing with 7 different domains concerning the HRQoL (friends, family, physical functioning, cognition, body image, emotional function and autonomy) was independently answered from patients and their parents during an outpatient visit at their pediatric cardiologist throughout Germany.

Results: 173 patients (40% female, 60% male, mean age 11.6 years) were interviewed, 167 questionnaires could be evaluated. The mean time interval after surgery was 9.8±3.4 years. Patient had had surgery for complete different types of CHD (ventricular septal defects n=50, Tetralogy of Fallot n=51, univentricular heart n=26, transposition of great arteries n=40). The results were compared with those of an age-matched control group (n=169). Patients with CHD reported a better HRQoL than the controls for all items (p<0.01). There was no significant gender specific difference. After puberty, the rating for most items, except of “body image“, had become very similar compared to controls. Pa­rents assessed their children significantly worse in 3 domains (friends, body image and emotion; p<0.01).

Conclusion: Children with congenital heart defects are able to develop coping structures, that enable them to live a normal life from their individual point of view. Integration in psychosocial structures seems to be rather normal when compared to healthy controls. Many patients considered their HRQoL as even better.

Zusammenfassung

Nach operativer Korrektur eines angeborenen Herzfehlers (CHD) bestehen bei vielen Patienten Restdefekte. Bei einigen gehen diese mit einer verminderten kardiorespiratorischen Leistungsfähigkeit und einer möglichen Einschränkung der gesundheitsbezogenen Lebensqualität (HRQoL) einher. Ziel unserer Studie war es, die Selbsteinschätzung der HRQoL bei Kindern nach Korrektur eines angeborenen Herzfehlers zu evaluieren.

Methode: Ein Fragebogen, der für die Selbsteinschätzung von Kinder und Jugendlichen von 8–18 Jahren entwickelt wurde und sich mit 7 unterschiedlichen Bereichen der HRQoL befasst (Freunde, Familie, körperliche Fähigkeit, kognitive Leistung, Körperbild, emotionale Fähigkeit und Selbstständigkeit), wurde von Patienten und Eltern unabhängig von einander bei einem Besuch ihres niedergelassenen Kinderkardiologen deutschlandweit beantwortet.

Ergebnisse: 173 Patienten ( 40% männlich, 60% weiblich, mittleres Alter 11,6 Jahre) wurden befragt, 167 Fragebogen konnten ausgewertet werden. Der mittlere Abstand zur Operation betrug 9,8±3,4 Jahre. Bei den Patienten waren die unterschiedlichsten Herzfehler korrigiert worden (Ventrikelseptumdefekt n=50, Fallot‘sche Tetralogie n=51, Univentrikuläres Herz n=26, Transposition der großen Gefäße n=40): Die Ergebnisse wurde mit denen einer Kontrollgruppe vergleichbaren Alters (n=169) verglichen. Patienten mit angeborenem Herzfehler beschrieben in allen Bereichen eine bessere HRQoL als die Kontroll­personen (p<0,01). Es bestanden keine geschlechtsspezifischen Unterschiede. Nach der Pubertät wurden die meisten Bereiche mit Ausnahme des Körperbildes ähnlich wie bei Gesunden eingeschätzt. Die elterliche Einschätzung war in 3 Bereichen signifikant schlechter als die der Patienten ­(Freunde, Körperbild, emotionale Fähigkeit, p<0,01).

Zusammenfassung: Kinder mit angeborenem Herzfehler entwickeln Verarbeitungsstrategien, die Ihnen aus eigener Sicht ein normales Leben erlauben. Verglichen mit gesunden Kindern, scheint die Integration in psychosoziale Strukturen weitgehend normal. Viel Patienten schätzen ihre HRQoL sogar besser ein.

Key words

health related quality - heart defect - children - congenital - parents

Schlüsselwörter

Lebensqualität - Herzfehler - Kinder - angeboren - Eltern

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