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Health-related quality of life in pre-school age children with single-ventricle CHD

Published online by Cambridge University Press:  02 January 2019

Kristina N. Heye Open the ORCID record for Kristina N. Heye [Opens in a new window] ,
Walter Knirsch ,
Ianina Scheer ,
Ingrid Beck ,
Kristina Wetterling ,
Andreas Hahn ,
Karoline Hofmann ,
Beatrice Latal ,
Bettina Reich  and
Markus A. Landolt
Kristina N. Heye*
Affiliation:
Child Research Centre, University Children’s Hospital, Zurich, Switzerland Child Development Centre, University Children’s Hospital, Zurich, Switzerland Paediatric Cardiology, Paediatric Heart Centre, University Children’s Hospital, Zurich, Switzerland
Walter Knirsch
Affiliation:
Child Research Centre, University Children’s Hospital, Zurich, Switzerland Paediatric Cardiology, Paediatric Heart Centre, University Children’s Hospital, Zurich, Switzerland
Ianina Scheer
Affiliation:
Child Research Centre, University Children’s Hospital, Zurich, Switzerland Diagnostic Imaging and MR-research Centre, University Children’s Hospital, Zurich, Switzerland
Ingrid Beck
Affiliation:
Child Development Centre, University Children’s Hospital, Zurich, Switzerland
Kristina Wetterling
Affiliation:
Child Development Centre, SPZ Frankfurt Mitte, Frankfurt/Main, Germany
Andreas Hahn
Affiliation:
Paediatric Neurology, University Hospital Giessen, Germany
Karoline Hofmann
Affiliation:
Paediatric Heart Centre, University Hospital Giessen, Justus-Liebig-University, Giessen, Germany
Beatrice Latal
Affiliation:
Child Research Centre, University Children’s Hospital, Zurich, Switzerland Child Development Centre, University Children’s Hospital, Zurich, Switzerland
Bettina Reich
Affiliation:
Paediatric Heart Centre, University Hospital Giessen, Justus-Liebig-University, Giessen, Germany
Markus A. Landolt
Affiliation:
Child Research Centre, University Children’s Hospital, Zurich, Switzerland Department of Psychosomatics and Psychiatry, University Children’s Hospital Zurich, Zurich, Switzerland Division of Child and Adolescent Health Psychology, Department of Psychology, University of Zurich, Zurich, Switzerland
*
Author for correspondence: K. N. Heye, MD, University Children’s Hospital, Steinwiesstrasse 75, 8032 Zurich, Switzerland. Tel: +41 76 498 73 63; Fax: +41 44 266 64 71; E-mail: [email protected]
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Abstract

Background

Little is known about health-related quality of life in young children undergoing staged palliation for single-ventricle CHD. The aim of this study was to assess the impact of CHD on daily life in pre-schoolers with single-ventricle CHD and to identify determinants of health-related quality of life.

Method

Prospective two-centre cohort study assessing health-related quality of life using the Preschool Paediatric Cardiac Quality of Life Inventory in 46 children at a mean age of 38 months and 3 weeks. Children with genetic anomalies were excluded. Scores were compared with reference data of children with biventricular CHD. Multiple linear regression analysis was used to identify determinants of health-related quality of life.

Results

Health-related quality of life in pre-schoolers with single-ventricle CHD was comparable to children with biventricular CHD. Preterm birth and perioperative variables were significant predictors of low health-related quality of life. Notably, pre-Fontan brain MRI findings and neurodevelopmental status were not associated with health-related quality of life. Overall, perioperative variables explained 24% of the variability of the total health-related quality of life score.

Interpretation

Despite substantial health-related burden, pre-schoolers with single-ventricle CHD showed good health-related quality of life. Less-modifiable treatment-related risk factors and preterm birth had the highest impact on health-related quality of life. Long-term follow-up assessment of self-reported health-related quality of life is needed to identify patients with poorer health-related quality of life and to initiate supportive care.

Keywords

Health-related quality of liferisk factorssingle-ventricleCHD
Type
Original Article
Information
Cardiology in the Young , Volume 29 , Issue 2 , February 2019 , pp. 162 - 168
Copyright
© Cambridge University Press 2019 

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Footnotes

*

The authors contributed equally to the manuscript

Cite this article: Heye KN, Knirsch W, Scheer I, Beck I, Wetterling K, Hahn A, Hofmann K, Latal B, Reich B, Landolt MA. (2018) Health-related quality of life in pre-school age children with single-ventricle CHD. Cardiology in the Young page 162 of 168. doi: 10.1017/S1047951118001993

References

1. Alsoufi, B, Mori, M, Gillespie, S, et al. Impact of Patient Characteristics and Anatomy on Results of Norwood Operation for Hypoplastic Left Heart Syndrome. The Annals of Thoracic Surgery 2015; 100: 591–598.Google Scholar
2. Marino, BS, Lipkin, PH, Newburger, JW, et al. Neurodevelopmental Outcomes in Children With Congenital Heart Disease: Evaluation and Management A Scientific Statement From the American Heart Association. Circulation 2012; 126: 1143–1172.Google Scholar
3. Mellion, K, Uzark, K, Cassedy, A, et al. Health-Related Quality of Life Outcomes in Children and Adolescents with Congenital Heart Disease. The Journal of Pediatrics 2014; 164: 781–788.e1.Google Scholar
4. Marino, BS, Tomlinson, RS, Wernovsky, G, et al. Validation of the Pediatric Cardiac Quality of Life Inventory. Pediatrics. 2010; 126: 498–508.Google Scholar
5. Eagleson, KJ, Justo, RN, Ware, RS, Johnson, SG, Boyle, FM. Health-related quality of life and congenital heart disease in Australia. Journal of Paediatrics and Child Health 2013; 49: 856–864.Google Scholar
6. O’Connor, AM, Wray, J, Tomlinson, RS, et al. Impact of Surgical Complexity on Health-Related Quality of Life in Congenital Heart Disease Surgical Survivors. J Am Heart Assoc 2016; 5: e001234.Google Scholar
7. Uzark, K, Jones, K, Slusher, J, Limbers, CA, Burwinkle, TM, Varni, JW. Quality of Life in Children With Heart Disease as Perceived by Children and Parents. Pediatrics. 2008; 121: e1060–e1067.Google Scholar
8. Williams, DL, Gelijns, AC, Moskowitz, AJ, et al. Hypoplastic left heart syndrome: Valuing the survival. The Journal of Thoracic and Cardiovascular Surgery 2000; 119: 720–731.Google Scholar
9. Goldberg, CS, Lu, M, Sleeper, LA, et al. Factors Associated with Neurodevelopment for Children with Single Ventricle Lesions. J Pediatr June 2014.Google Scholar
10. Atz, AM, Zak, V, Mahony, L, et al. Longitudinal Outcomes of Patients With Single Ventricle After the Fontan Procedure. Journal of the American College of Cardiology 2017; 69: 2735–2744.Google Scholar
11. Mussatto, K, Tweddell, J. Quality of life following surgery for congenital cardiac malformations in neonates and infants. Cardiology in the Young 2005; 15 (S1): 174–178.Google Scholar
12. Werner, H, Latal, B, Valsangiacomo Buechel, E, Beck, I, Landolt, MA. Health-related quality of life after open-heart surgery. The Journal of Pediatrics 2014; 164: 254–258.e1.10.1016/j.jpeds.2013.10.022Google Scholar
13. 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 and Quality of Life Outcomes 2013; 11: 99.Google Scholar
14. Reich, B, Heye, KN, O’Gorman Tuura, R, et al. Neurodevelopmental outcome and health related quality of life in children with single ventricle heart disease before Fontan procedure. Seminars in Thoracic and Cardiovascular Surgery 2017; 29: 504–513.Google Scholar
15. WHO Multicentre Growth Reference Study Group. WHO Child Growth Standards based on length/height, weight and age. Acta Paediatrica Supplement 2006; 450: 76–85.Google Scholar
16. Largo, RH, Pfister, D, Molinari, L, Kundu, S, Lipp, A, Duc, G. Significance of prenatal, perinatal and postnatal factors in the development of AGA preterm infants at five to seven years. Developmental Medicine & Child Neurology 1989; 31: 440–456.Google Scholar
17. Bayley, N. Bayley Scales of Infant and Toddler Development Manual, 3rd Edition. The Psychological Corporation, San Antonio, TX, 2006.Google Scholar
18. Hajnal, BL, Sahebkar-Moghaddam, F, Barnwell, AJ, Barkovich, AJ, Ferriero, DM. Early prediction of neurologic outcome after perinatal depression. Pediatric Neurology 1999; 21: 788–793.Google Scholar
19. Knirsch, W, Mayer, KN, Scheer, I, et al. Structural cerebral abnormalities and neurodevelopmental status in single ventricle congenital heart disease before Fontan procedure. European Journal of Cardio-thoracic Surgery 2016; 51: 740–746.Google Scholar
20. 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. Quality of Life Research 2013; 22: 2877–2888.Google Scholar
21. DeVellis, RF. Scale Development: Theory and Applications, Fourth edition. SAGE Publications, Inc, Los Angeles, 2016.Google Scholar
22. Gray, PH, Edwards, DM, O’Callaghan, MJ, Cuskelly, M, Gibbons, K. Parenting stress in mothers of very preterm infants — Influence of development, temperament and maternal depression. Early Human Development 2013; 89: 625–629.Google Scholar
23. Lisanti, AJ, Allen, LR, Kelly, L, Medoff-Cooper, B. Maternal Stress and Anxiety in the Pediatric Cardiac Intensive Care Unit. American Journal of Respiratory and Critical Care 2017; 26: 118–125.Google Scholar
24. Frigiola, A, Bull, C, Wray, J. Exercise capacity, quality of life, and resilience after repair of tetralogy of Fallot: a cross-sectional study of patients operated between 1964 and 2009. Cardiol Young 2014; 24: 79–86.Google Scholar
25. Albrecht, GL, Devlieger, PJ. The disability paradox: high quality of life against all odds. Social Science & Medicine 1999; 48: 977–988.Google Scholar
26. Franck, LS, Mcquillan, A, Wray, J, Grocott, MPW, Goldman, A. Parent Stress Levels During Children’s Hospital Recovery After Congenital Heart Surgery. Pediatric Cardiology 2010; 31: 961–968.Google Scholar
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