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Direct non-medical and indirect costs for families with children with congenital cardiac defects in Germany: a survey from a university centre

Published online by Cambridge University Press:  04 March 2010

Andreas U. Gerber ,
Agnieszka Hompanera Torre ,
Guido Büscher ,
Stephanie A.K. Stock ,
Christine Graf ,
Sabine Schickendantz ,
Konrad Brockmeier  and
Markus Lüngen
Andreas U. Gerber*
Affiliation:
Institute for Health Economics and Clinical Epidemiology, University of Cologne, Gleueler Strasse, Cologne, Germany
Agnieszka Hompanera Torre
Affiliation:
Institute for Health Economics and Clinical Epidemiology, University of Cologne, Gleueler Strasse, Cologne, Germany
Guido Büscher
Affiliation:
Institute for Health Economics and Clinical Epidemiology, University of Cologne, Gleueler Strasse, Cologne, Germany
Stephanie A.K. Stock
Affiliation:
Institute for Health Economics and Clinical Epidemiology, University of Cologne, Gleueler Strasse, Cologne, Germany
Christine Graf
Affiliation:
Institute for Cardiovascular Research and Sports Medicine, German Sport University Cologne, Carl-Diem-Weg 6, Cologne, Germany
Sabine Schickendantz
Affiliation:
Department of Pediatric Cardiology, Heart Center University Hospital Cologne/Herzzentrum Universitätsklinik Köln, University of Cologne, Kerpener Strasse, Cologne, Germany
Konrad Brockmeier
Affiliation:
Department of Pediatric Cardiology, Heart Center University Hospital Cologne/Herzzentrum Universitätsklinik Köln, University of Cologne, Kerpener Strasse, Cologne, Germany
Markus Lüngen
Affiliation:
Institute for Health Economics and Clinical Epidemiology, University of Cologne, Gleueler Strasse, Cologne, Germany
*
Correspondence to: Andreas U. Gerber, Institute for Health Economics and Clinical Epidemiology, University of Cologne, Gleueler Strasse 176-78, 50935 Cologne, Germany. Tel: 0049 221 4679-0; Fax: 0049 221 430-2304; E-mail: andreas.gerber@uk-koeln.de
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Abstract

Introduction

Parents of children with congenital cardiac disease suffer from psychological stress and financial burdens. These costs have not yet been quantified.

Materials and methods

In cooperation with paediatricians, social workers, and parents, a questionnaire was devised to calculate direct non-medical and indirect costs. Direct non-medical costs include all costs not directly related to medical services such as transportation. Indirect costs include lost productivity measured in lost income from wages. Parents were retrospectively queried on costs and refunds incurred during the child’s first and sixth year of life. The questionnaire was sent out to 198 families with children born between 1980 and 2000. Costs were adjusted for inflation to the year 2006. Children were stratified into five groups according to the severity of their current health status.

Results

Fifty-four families responded and could be included into the analysis (27.7%). Depending on severity, total direct non-medical and indirect costs in the first year of life ranged between an average of €1654 in children with no or mild (remaining) cardiac defects and an average €2881 in children with clinically significant (residual/remaining) findings. Mean expenses in the sixth year of life were as low as €562 (no or mild (remaining) cardiac defects) and as high as €5213 (potentially life-threatening findings). At both points in time, the highest costs were lost income and transportation; and day care/ babysitting for siblings was third.

Discussion

Families of children with congenital cardiac disease and major sequelae face direct non-medical and indirect costs adding up to €3000 per year on average. We should consider compensating families from low socioeconomic backgrounds to minimise under-use of non-medical services of assistance for their children.

Keywords

Congenital cardiac diseaseinborn cardiac defectcostslost productivitytransportation
Type
Original Articles
Information
Cardiology in the Young , Volume 20 , Issue 2 , April 2010 , pp. 178 - 185
Copyright
Copyright © Cambridge University Press 2010

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References

1.Bundesverband Herzkranke Kinder. http://www.herzkranke-kinder-muenster.de/index.htm?/bundesverband.htm. accessed 25 October, 2007.Google Scholar
2.Arafa, MA, Zaher, SR, El-Dowaty, AA, Monseeb, DE. Quality of life among parents of children with heart disease. Health Qual Life Outcomes 2008; 6: 91.CrossRefGoogle ScholarPubMed
3.Brosig, CL, Mussatto, KA, Kuhn, EM, Tweddell, JS. Psychosocial outcomes for preschool and families after surgery for complex congenital heart disease. Pediatr Cardiol 2007; 28: 255–262.CrossRefGoogle ScholarPubMed
4.Lawoko, S. Factors influencing satisfaction and well-being among parents of congenital heart disease children: development of a conceptual model based on the literature review. Scand J Caring Sci 2007; 21: 106–117.CrossRefGoogle ScholarPubMed
5.Lawoko, S, Soares, JJ. Psychosocial morbidity among parents of children with congenital heart disease: a prospective longitudinal study. Heart Lung 2006; 35: 301–314.CrossRefGoogle ScholarPubMed
6.Goldbeck, L, Melches, J. The impact of the severity of disease and social disadvantage on quality of life in families with congenital cardiac diseases. Cardiol Young 2006; 16: 67–75.CrossRefGoogle Scholar
7.Wray, J, Sensky, T. Psychological functioning in parents of children undergoing elective cardiac surgery. Cardiol Young 2004; 14: 131–139.CrossRefGoogle ScholarPubMed
8.Spijkerboer, AW, Helbing, WA, Bogers, AJJC, Van Domburg, RT, Verhulst, FC, Utens, EMWJ. Long-term psychological distress, and styles of coping, in parents of children and adolescents who underwent invasive treatment for congenital cardiac disease. Cardiol Young 2007; 17: 638–645.CrossRefGoogle ScholarPubMed
9.Drummond, MF, Sculpher, MJ, Torrance, GW, O’Brien, BJ, Stoddart, GL. Methods for the Economic Evaluation of Health Care Programmes, 3rd edition. Oxford University Press, Oxford, 2005.CrossRefGoogle Scholar
10.Kuhlthau, K, Hill, KS, Yucel, R, Perrin, JM. Financial burden for families of children with special health care needs. Matern Child Health J 2005; 9: 399–415.CrossRefGoogle ScholarPubMed
11.Bjarnason-Wehrens, B, Dordel, S, Schickendantz, S, et al. Motor development in children with congenital cardiac diseases compared to their health peers. Cardiol Young 2007; 17: 487–498.CrossRefGoogle Scholar
12.Schickendantz, S, Sticker, EJ, Dordel, S, Bjarnason-Wehrens, B. Sport and physical education in children with congenital heart disease. Deutsch Aerztebl 2007; 104: A563–A569; http://www.aerzteblatt.de/int/article.asp?id=58086, accessed 20 October, 2007.Google Scholar
13. Deutsches Institut für Wirtschaftsforschung (DIW Berlin), Daten des Sozio-Ökonomischen Panels (SOEP). http://www.diw.de/deutsch/soep/26628.html, accessed 25 November, 2007.Google Scholar
14.Schallböck, KO, Fischedick, M, Brouns, B, et al. Klimawirksame Emissionen des PKW Verkehrs und Bewertung von Minderungsstrategien. Wuppertal Spezial 34. Wuppertal 2006 Wuppertal Institut für Klima, Umwelt, Energie GmbH. http://www.wupperinst.org/uploads/tx_wibeitrag/ws34.pdf, accessed 20 October, 2007.Google Scholar
15.Anderson, D, Dumont, S, Jacobs, P, Azzaria, L. The personal costs of caring for a child with a disability: A review of the literature. Public Health Reports 2007; 122: 3–16.CrossRefGoogle ScholarPubMed
16.Shattuck, PT, Parish, SL. Financial burden in families of children with special health care needs: variability among states. Pediatrics 2008; 122: 13–18.CrossRefGoogle ScholarPubMed
17.Eiser, C, Upton, P. Costs for caring for a child with cancer: a questionnaire survey. Child: Care Health Development 2006; 33: 455–459.CrossRefGoogle Scholar
18.Chan, E, Zhan, C, Homer, J. Health care use and costs for children with attention deficit/hyperactivity disorder. Arch Pediatr Adolesc Med 2002; 156: 504–511.CrossRefGoogle ScholarPubMed
19.Lozano, P, Fisherman, P, VonKorff, M, Heet, J. Health care utilization and cost among children with asthma who were enrolled in a health maintenance organization. Pediatrics 1997; 99: 757–764.CrossRefGoogle Scholar
20.Yount, LE, Mahle, WT. Economic analysis of palivizumab in infants with congenital heart disease. Pediatrics 2004; 114: 1606–1611.CrossRefGoogle ScholarPubMed