Download PDF
Klin Padiatr 2014; 226(05): 281-286
DOI: 10.1055/s-0034-1382019
Original Article
© Georg Thieme Verlag KG Stuttgart · New York

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

Lebensqualität nach operativer Korrektur eines angeborenen Herzfehlers
A. Heusch
1   Abteilung Paediatrische Kardiologie/Pulmonologie, Helios-Klinikum Wuppertal, Wuppertal
,
G. Calaminus
2   Pediatric Oncology, University Muenster, Muenster, Germany
,
J. Kahl
3   Kinderkardiologische Praxis, Uhlandstrasse, Duesseldorf, Germany
,
K. Schmidt
4   Pediatric Cardiology, University Duesseldorf, Duesseldorf, Germany
› Author Affiliations
Further Information

Publication History

Publication Date:
25 July 2014 (online)

Also available at
    Permissions and Reprints

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
 

  • References

  • 1 The European Paediatric Cardiac Code: the first revision. Cardiol Young 2002; 12 (Suppl. 02) 1-211
    PubMedGoogle Scholar
  • 2 Berghammer M, Dellborg M, Ekman I. Young adults experiences of living with congenital heart disease. Int J Cardiol 2006; 110: 340-347
    CrossrefPubMedGoogle Scholar
  • 3 Calaminus G, Weinspach S, Teske C et al. Quality of life in children and adolescents with cancer. First results of an evaluation of 49 patients with the PEDQOL questionnaire. Klin Padiatr 2000; 212: 211-215
    Article in Thieme ConnectPubMedGoogle Scholar
  • 4 Calaminus G, Weinspach S, Teske C et al. Quality of survival in children and adolescents after treatment for childhood cancer: the influence of reported late effects on health related quality of life. Klin Padiatr 2007; 219: 152-157
    Article in Thieme ConnectPubMedGoogle Scholar
  • 5 Cassedy A, Drotar D, Ittenbach R et al. The impact of socio-economic status on health related quality of life for children and adolescents with heart disease. Health & Quality of Life Outcomes 2013; 11: 1-8
    CrossrefPubMedGoogle Scholar
  • 6 Claessens P, Moons P, de Casterle BD et al. What does it mean to live with a congenital heart disease? A qualitative study on the lived experiences of adult patients. Eur J Cardiovasc Nurs 2005; 4: 3-10
    CrossrefPubMedGoogle Scholar
  • 7 Costello JM, O’Brien M, Wypij D et al. Quality of life of pediatric cardiac patients who previously required extracorporeal membrane oxygenation. Pediatric Critical Care Medicine: A Journal Of The Society Of Critical Care Medicine And The World Federation Of Pediatric Intensive And Critical Care Societies 2012; 13: 428-434
    CrossrefPubMedGoogle Scholar
  • 8 d’Udekem Y, Cheung MM, Setyapranata S et al. How good is a good Fontan? Quality of life and exercise capacity of Fontans without arrhythmias. Ann Thorac Surg 2009; 88: 1961-1969
    CrossrefPubMedGoogle Scholar
  • 9 Eiser C. What can we learn from other illnesses?. J Cyst Fibros 2003; 2: 58-60
    CrossrefPubMedGoogle Scholar
  • 10 Garcia Guerra G, Robertson CMT, Alton GY et al. Quality of life 4 years after complex heart surgery in infancy. The Journal Of Thoracic And Cardiovascular Surgery 2013; 145: 482-488
    CrossrefPubMedGoogle Scholar
  • 11 Goldbeck L, Melches J. Quality of life in families of children with congenital heart disease. Qual Life Res 2005; 14: 1915-1924
    CrossrefPubMedGoogle Scholar
  • 12 Hovels-Gurich HH, Bauer SB, Schnitker R et al. Long-term outcome of speech and language in children after corrective surgery for cyanotic or acyanotic cardiac defects in infancy. Eur J Paediatr Neurol. 2008
    PubMedGoogle Scholar
  • 13 Hovels-Gurich HH, Konrad K, Skorzenski D et al. Long-term behavior and quality of life after corrective cardiac surgery in infancy for tetralogy of Fallot or ventricular septal defect. Pediatr Cardiol 2007; 28: 346-354
    CrossrefPubMedGoogle Scholar
  • 14 Huning BM, Reimann M, Beerenberg U et al. Establishment of a family-centred care programme with follow-up home visits: implications for clinical care and economic characteristics. Klin Padiatr. 2012; 224: 431-436
    Article in Thieme ConnectPubMedGoogle Scholar
  • 15 Kamphuis M, Ottenkamp J, Vliegen HW et al. Health related quality of life and health status in adult survivors with previously operated complex congenital heart disease. Heart 2002; 87: 356-362
    CrossrefPubMedGoogle Scholar
  • 16 Koscik RL, Douglas JA, Zaremba K et al. Quality of life of children with cystic fibrosis. J Pediatr 2005; 147: S64-S68
    CrossrefPubMedGoogle Scholar
  • 17 Lambert LM, Minich LL, Newburger JW et al. Parent- versus child-reported functional health status after the Fontan procedure. Pediatrics 2009; 124: e942-e949
    CrossrefPubMedGoogle Scholar
  • 18 Lane DA, Lip GY, Millane TA. Quality of life in adults with congenital heart disease. Heart 2002; 88: 71-75
    CrossrefPubMedGoogle Scholar
  • 19 Marino BS, Drotar D, Cassedy A et al. External validity of the pediatric cardiac quality of life inventory. Qual Life Res 2011; 20: 205-214
    CrossrefPubMedGoogle Scholar
  • 20 McCrindle BW, Williams RV, Mitchell PD et al. Relationship of patient and medical characteristics to health status in children and adolescents after the Fontan procedure. Circulation 2006; 113: 1123-1129
    CrossrefPubMedGoogle Scholar
  • 21 Menteer J, Beas V, Chang J et al. and Health-Related Quality of Life Among Pediatric Patients With Heart Failure. Pediatric Cardiology 2013; 34: 431
    CrossrefPubMedGoogle Scholar
  • 22 Moons P, Norekval TM. Is sense of coherence a pathway for improving the quality of life of patients who grow up with chronic diseases? A hypothesis. Eur J Cardiovasc Nurs 2006; 5: 16-20
    CrossrefPubMedGoogle Scholar
  • 23 Moons P, Van DK, Budts W et al. Caliber of quality-of-life assessments in congenital heart disease: a plea for more conceptual and methodological rigor. Arch Pediatr Adolesc Med 2004; 158: 1062-1069
    CrossrefPubMedGoogle Scholar
  • 24 Moons P, Van DK, De BL et al. Quality of life and health status in adults with congenital heart disease: a direct comparison with healthy counterparts. Eur J Cardiovasc Prev Rehabil 2006; 13: 407-413
    PubMedGoogle Scholar
  • 25 Mueller G, Sarikouch S, Beerbaum P et al. 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. Pediatric Cardiology 2013; 34: 1081-1087
    CrossrefPubMedGoogle Scholar
  • 26 Muller HL, Bueb K, Bartels U et al. Obesity after childhood craniopharyngioma-German multicenter study on pre-operative risk factors and quality of life. Klin Padiatr 2001; 213: 244-249
    Article in Thieme ConnectPubMedGoogle Scholar
  • 27 Mussatto K, Wernovsky G. Challenges facing the child, adolescent, and young adult after the arterial switch operation. Cardiol Young 2005; 15 (Suppl. 01) 111-121
    PubMedGoogle Scholar
  • 28 Nardi L, Zucchini S, D’Alberton F et al. Quality of life, psychological adjustment and metabolic control in youths with type 1 diabetes: a study with self- and parent-report questionnaires. Pediatr Diabetes 2008; 9: 496-503
    CrossrefPubMedGoogle Scholar
  • 29 Niemitz M, Seitz DCM, Oebels M et al. The development and validation of a health-related quality of life questionnaire for pre-school children with a chronic heart disease. Qual Life Res. 2013 10. 2877-2888
    PubMedGoogle Scholar
  • 30 Norozi K, Gravenhorst V, Hobbiebrunken E et al. Normality of cardiopulmonary capacity in children operated on to correct congenital heart defects. Arch Pediatr Adolesc Med 2005; 159: 1063-1068
    CrossrefPubMedGoogle Scholar
  • 31 Rose M, Kohler K, Kohler F et al. Determinants of the quality of life of patients with congenital heart disease. Qual Life Res 2005; 14: 35-43
    CrossrefPubMedGoogle Scholar
  • 32 Sairanen HI, Nieminen HP, Jokinen EV. Late results and quality of life after pediatric cardiac surgery in Finland: a population-based study of 6,461 patients with follow-up extending up to 45 years. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2005; 168-172
    PubMedGoogle Scholar
  • 33 Schneider DT. Registries, diagnostic studies, and therapeutic interventional trials: generating evidence in a broad perspective. Klin Padiatr. 2013; 225: 293-295
    Article in Thieme ConnectPubMedGoogle Scholar
  • 34 Spijkerboer AW, Utens EM, De Koning WB et al. Health-related Quality of Life in children and adolescents after invasive treatment for congenital heart disease. Qual Life Res 2006; 15: 663-673
    CrossrefPubMedGoogle Scholar
  • 35 Uzark K, Jones K. Parenting stress and children with heart disease. J Pediatr Health Care 2003; 17: 163-168
    CrossrefPubMedGoogle Scholar
  • 36 van Rijen EH, Utens EM, Roos-Hesselink JW et al. Styles of coping and social support in a cohort of adults with congenital heart disease. Cardiol Young 2004; 14: 122-130
    CrossrefPubMedGoogle Scholar
  • 37 Verhoof E, Maurice-Stam H, Heymans H et al. Health-related quality of life, anxiety and depression in young adults with disability benefits due to childhood-onset somatic conditions. Child & Adolescent Psychiatry & Mental Health 2013; 7: 1
    PubMedGoogle Scholar
  • 38 Wernovsky G. Current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. Cardiol Young 2006; 16 (Suppl. 01) 92-104
    PubMedGoogle Scholar
  • 39 Wernovsky G, Shillingford AJ, Gaynor JW. Central nervous system outcomes in children with complex congenital heart disease. Curr Opin Cardiol 2005; 20: 94-99
    CrossrefPubMedGoogle Scholar