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Is having a job a protective factor? Employment status and state of medical care as subjectively perceived by adults with CHD in Germany

Published online by Cambridge University Press:  10 November 2016

Paul C. Helm ,
Elisabeth J. Sticker ,
Roland Keuchen ,
Marc-André Koerten ,
Gerhard-Paul Diller ,
Oktay Tutarel  and
Ulrike M. M. Bauer
Paul C. Helm*
Affiliation:
National Register for Congenital Heart Defects, Berlin, Germany
Elisabeth J. Sticker
Affiliation:
Department of Psychology, University of Cologne, Cologne, Germany
Roland Keuchen
Affiliation:
Bundesvereinigung JEMAH e. V., Aachen, Germany
Marc-André Koerten
Affiliation:
National Register for Congenital Heart Defects, Berlin, Germany
Gerhard-Paul Diller
Affiliation:
Center for Adults with Congenital Heart Defects (EMAH-Center), Muenster University Hospital, Muenster, Germany Competence Network for Congenital Heart Defects, Berlin, Germany
Oktay Tutarel
Affiliation:
Department of Cardiology and Angiology, Hannover Medical School, Hannover, Germany Competence Network for Congenital Heart Defects, Berlin, Germany
Ulrike M. M. Bauer
Affiliation:
National Register for Congenital Heart Defects, Berlin, Germany Competence Network for Congenital Heart Defects, Berlin, Germany
*
Correspondence to: P. C. Helm, Dipl.-Psych., National Register for Congenital Heart Defects, Augustenburger Platz 1, 13353 Berlin, Germany. Tel.: +49 30/4593 7289; Fax: +49 30/4593 7278; E-mail: [email protected]; [email protected]
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Abstract

Background

Most patients born with CHD nowadays reach adulthood, and thus quality of life, life situation, and state of medical care aspects are gaining importance in the current era. The present study aimed to investigate whether patients’ assessment depends on their means of occupation. The findings are expected to be helpful in optimising care and for developing individual treatment plans.

Methods

The present study was based on an online survey conducted in cooperation with patient organisations. Participants were recruited from the database of the German National Register for Congenital Heart Defects. In total, 1828 individuals (777 males, 1051 females) took part. Participants were asked to rate aspects such their state of health on a six-tier scale (1=worst specification). Response behaviour was measured against the background of occupational details.

Results

Training for or pursuing a profession was found to be significantly associated with participants’ rating of five of the six examined aspects (p<0.05). Sex seemed to play an important part in four of the six aspects.

Conclusions

An optimal treatment plan for adults with CHD should always consider aspects such as sex and employment status. To work out such an optimal and individual treatment plan for each adult CHD patient, an objective tool to measure patients’ actual CHD-specific knowledge precluding socially accepted response bias would be very useful.

Keywords

Jobprotective factormedical careCHDonline surveyadult patients
Type
Original Articles
Information
Cardiology in the Young , Volume 27 , Issue 6 , August 2017 , pp. 1110 - 1117
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Copyright
© Cambridge University Press 2016 

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References

1. Schumacher, G, Hess, J, Bühlmeyer, K. Klinische Kinderkardiologie, 3rd edn. Springer, Berlin, Heidelberg, 2001.Google Scholar
2. Bauer, U, Lange, PE. Kompetenznetz Angeborene Herzfehler. Humboldt-Spektrum 2003; 10: 4–9.Google Scholar
3. Schwedler, G, Lindinger, A, Lange, PE, et al. Frequency and spectrum of congenital heart defects among live births in Germany. Clin Res Cardiol 2011; 100: 1111–1117.CrossRefGoogle ScholarPubMed
4. Diller, GP, Breithardt, G, Baumgartner, H. Angeborene Herzfehler im Erwachsenenalter. Dtsch Ärztebl 2011; 108: 452–459.Google Scholar
5. Moons, P, Bovijin, L, Budts, W, et al. Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium. Circulation 2010; 122: 2264–2272.CrossRefGoogle ScholarPubMed
6. Marelli, AJ, Mackie, AS, Ionescu-Ittu, R, et al. Congenital heart disease in the general population: changing prevalence and age distribution. Circulation 2007; 115: 163–167.CrossRefGoogle ScholarPubMed
7. Kovacs, AH, Verstappen, A. The whole adult congenital heart disease patient. Prog Cardiovasc Dis 2011; 53: 247–253.CrossRefGoogle ScholarPubMed
8. Sable, C, Foster, E, Uzark, K, et al. Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues: a scientific statement from the American Heart Association. Circulation 2011; 123: 1454–1485.CrossRefGoogle ScholarPubMed
9. Hess, J, Bauer, U, de Haan, F, et al. Recommendations for adult and paediatric cardiologists on obtaining additional qualification in ‘Adults with Congenital Heart Disease’ (ACHD). Int J Cardiol 2011; 149: 186–191.CrossRefGoogle ScholarPubMed
10. Kaemmerer, H, Bauer, U, de Haan, F, et al. Recommendations for improving the quality of the interdisciplinary medical care of grown-up with congenital heart disease (GUCH). Int J Cardiol 2011; 150: 59–64.CrossRefGoogle Scholar
11. Hager, A, Hess, J. Lebensqualität nach Operation angeborener Herzfehler. Monatsschr Kinderheilkd 2006; 154: 639–643.CrossRefGoogle Scholar
12. Moons, P, Van Deyk, K, Marquet, K, et al. Individual quality of life in adults with congenital heart disease: a paradigm shift. Eur Heart J 2005; 26: 298–307.CrossRefGoogle ScholarPubMed
13. Vigl, M, Niggemeyer, E, Hager, A, et al. The importance of socio-demographic factors for the quality of life of adults with congenital heart disease. Qual Life Res 2011; 20: 169–177.CrossRefGoogle ScholarPubMed
14. Lesch, W, Specht, K, Lux, A, et al. Disease-specific knowledge and information preferences of young patients with congenital heart disease. Cardiol Young 2014; 24: 321–330.CrossRefGoogle ScholarPubMed
15. Helm, PC, Koerten, MA, Abdul-Khaliq, H, et al. Representativeness of the German National Register for Congenital Heart Defects: a clinically oriented analysis. Cardiol Young 2015; 26: 921–926.CrossRefGoogle ScholarPubMed
16. Bär, T. Die spontane Gesprächszeit von Patienten zu Beginn des Arztgesprächs in der hausärztlichen Praxis. Freie Universität Berlin, Berlin, Germany, 2009.Google Scholar
17. Deveugele, M, Derese, A, van den Brink-Muinen, A, et al. Consultation length in general practice: cross sectional study in six European countries. BMJ 2002; 325: 472.CrossRefGoogle ScholarPubMed
18. Britt, HC, Valenti, L, Miller, GC. Determinants of consultation length in Australian general practice. Med J Aust 2005; 183: 68.CrossRefGoogle ScholarPubMed
19. Grande, G. Gender-specific aspects in health care delivery and rehabilitation after an acute myocardial infarction. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz 2008; 51: 36–45.CrossRefGoogle ScholarPubMed
20. Esser, H. Können Befragte lügen? Zum Konzept des «wahren Wertes» im Rahmen der handlungstheoretischen Erklärung von Situationseinflüssen bei der Befragung. Kolner Z Soz Sozpsychol 1986; 38: 314–336.Google Scholar
21. Mackie, AS, Ionescu-Ittu, R, Therrien, J, et al. Children and adults with congenital heart disease lost to follow-up who and when? Circulation 2009; 120: 302–309.CrossRefGoogle ScholarPubMed
22. Moons, P, Hilderson, D, Van Deyk, K. Implementation of transition programs can prevent another lost generation of patients with congenital heart disease. Eur J Cardiovasc Nurs 2008; 7: 259–263.CrossRefGoogle ScholarPubMed
23. McKee-Ryan, F, Song, Z, Wanberg, CR, et al. Psychological and physical well-being during unemployment: a meta-analytic study. J Appl Psychol 2005; 90: 53.CrossRefGoogle ScholarPubMed
24. Becker, U. Die Inklusionslüge. Behinderung im Flexiblen Kapitalismus. Transcript, Bielefeld, 2015.Google Scholar