title: Health-related quality of life compared with cardiopulmonary exercise testing at the midterm follow-up visit after tetralogy of Fallot repair: a study of the German competence network for congenital heart defects.
abstract: This nationwide study aimed to evaluate health-related quality of life (QoL) experienced by children after tetralogy of Fallot repair and to compare self-reported physical ability with objective exercise performance. This prospective nonrandomized, government-funded multicenter study enrolled 168 patients (70 girls; ages 8-16 years) after tetralogy of Fallot repair at eight German heart centers. Health-related QoL was analyzed by the self-reported KINDL-R quality-of-life questionnaire. The patients' actual exercise capacity was evaluated by a cardiopulmonary exercise test. Health-related QoL and cardiopulmonary exercise capacity were compared with those of an age-matched German standard population. Correlation of health-related QoL with self-estimated physical rating and cardiopulmonary exercise capacity were analyzed. Health-related QoL in children and adolescents after tetralogy of Fallot repair is without limitation. Compared with the standard population, all the items evaluated by the KINDL-R questionnaire showed better or similar values, whereas objective exercise capacity compared with that of the standard population was impaired. Peak oxygen uptake correlated significantly with the physical well-being (p = 0.002) and the total score (p = 0.01) of the KINDL-R questionnaire. Health-related QoL experienced by children and adolescents after tetralogy of Fallot repair is comparable with that of the healthy standard population. However, closer inspection shows that self-estimated physical functioning is significantly overestimated compared with actual exercise capacity. Quality-of-life instruments and exercise tests, therefore, should be used in a complementary manner with children to avoid eventually fatal misinterpretation of patient-estimated physical ability.
authors.affiliation: Clinic for Pediatric Cardiology, University Heart Centre Hamburg-Eppendorf, Martinistraße 52, 20246 Hamburg, Germany. go.mueller@uke.de
authors.forename: Goetz C
authors.initials: GC
authors.lastname: Mueller
authors.forename: Samir
authors.initials: S
authors.lastname: Sarikouch
authors.forename: Philipp
authors.initials: P
authors.lastname: Beerbaum
authors.forename: Alfred
authors.initials: A
authors.lastname: Hager
authors.forename: Karl-Otto
authors.initials: KO
authors.lastname: Dubowy
authors.forename: Brigitte
authors.initials: B
authors.lastname: Peters
authors.forename: Thomas S
authors.initials: TS
authors.lastname: Mir
mesh_terms: D000293:Adolescent; D002648:Child; D005080:Exercise Test; D005260:Female; D005500:Follow-Up Studies; D005858:Germany; D006801:Humans; D008297:Male; D011446:Prospective Studies; D011788:Quality of Life; D011795:Surveys and Questionnaires; D013771:Tetralogy of Fallot / Q000503:physiopathology* / Q000601:surgery*