Life chances after surgery for congenital heart defects II - A 15-year follow-up
The project team
Project management
Prof. Dr. Siegfried Geyer for the sociological-psychological part (Medical Sociology, MHH)
Prof. Dr. Thomas Paul, Prof. Dr. Kambiz Norozi for the pediatric-cardiological part (Clinical Department of Paediatric Cardiology and Intensive Care Medicine, University Hospital Göttingen)
Project implementation
Prof. Dr. Dr. Claudia Dellas (Clinical Department of Paediatric Cardiology and Intensive Care Medicine, University Hospital Göttingen)
Lena Röbbel (Medical Sociology, MHH)
Summary of the results (Life chances I)
The previous studies showed that the career opportunities of patients with congenital heart defects do not differ from those of the general population over the life span covered by the study. The results on employment and social mobility conveyed an overall positive impression of the patients' integration into everyday and professional life, and the patients also appeared satisfied and successful at work despite occasional disease-related disadvantages. Although there were differences between patients and the general population in terms of performance and body image, only men showed clear and consistent differences. The results indicated a more negative body image than in women; men considered themselves to be significantly more deficient and less capable. The negative attitude showed clear differences to the general population sample and also had a clear impact on a wide variation of psychological stress measures. These differences were particularly evident in physical symptoms such as compulsive behavior, insecurity, anxiety and aggressiveness. A negative body image had a significant effect on the levels of depression, anxiety, hostility and psychoticism, particularly in men, while the effects in women were less pronounced. The results showed that men suffered significantly more from the limitations of their congenital heart defect than women, and this should be seen particularly in the context of the assessment of limited physical performance. These impairments perceived by the patients put the overall positive assessment of professional integration into perspective.
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Current state of research
Around one percent of all live births suffer from a malformation of the heart or large vessels. The prevalence of congenital heart defects has hardly changed worldwide in the last 25 years. This means that around 6500 to 7000 newborns in Germany are born with a congenital heart defect every year. Due to increasingly successful treatment, more and more children are reaching adulthood, so that the group of adults with congenital heart defects that have undergone surgery or interventional treatment is steadily increasing. It is estimated that there are currently more than 150,000 adultsliving in Germany witha congenital heart defectthat has been treated and may still require treatment (EMAH patients). The increased life expectancy of this patient group has resulted in new requirements for medical care. Operations on the heart or the neighboring vessels are additional risk factors for the premature development of heart failure. Depending on the severity of the heart defect, the risk increases in this group from the age of 30, whereas in the general population this development only occurs after the age of 60.
Objectives
The general objectives of the project are to investigate changes in physical and mental health and life situation depending on the severity of the congenital heart defect. The women and men in the study group will be between 26 and 57 years old at the time of the planned start of the project. The aim is to investigate whether the overall positive results of the preliminary study (see below) from 2003-2005 are still valid after more than 15 years, or whether, after a certain age, general performance has decreased to such an extent that the risk of social problems also increases, for example due to cardiac restrictions. The study looks at the effects of the illnesses on both professional and private life as well as on mental health. Another innovative aspect of the study is the inclusion of population-based comparative data on processes of social advancement and decline, body image and quality of life. This will make it possible to separate health changes that can be attributed to congenital heart defects from "natural" progressions.
The project aims to provide answers to the following questions
- Did the extent of heart failure increase in the study population from the first to the second measurement point?
- Does the development of heart failure differ between men and women?
- Do EMAH patients differ from the general population in terms of age at exit from work?
- Do the risks of premature retirement differ between occupational groups?
- Did intragenerational occupational advancement and relegation processes take place between the first and second time points of the study?
- Did body image and psychological impairments change over the study period and did the correlations between the two change?
Funding: Fördergemeinschaft Deutsche Kinderherzzentren e.V.
Funding period: 01.06.2017 - 01.06.2019
Predecessor project
Management:
Prof. Dr. Siegfried Geyer for the sociological-psychological part
Prof. Dr. Armin Wessel for the pediatric-cardiological part
Prof. Dr. Monika Zoege, Prof. Dr. Kambiz Norozi, Valentin Alpers, J. Arnold, Almut Kempa, Simone Wandt
Background:
About 1% of all children are born with a congenital heart defect. Today, corrective surgery usually begins soon after birth. The malformation can either be completely corrected (curative) or residual defects can remain (reparative surgery). In the case of severe heart defects, only palliative surgery is possible, which allows partial correction, but severe symptoms and impairments still remain. Depending on the severity of the heart defect, the risks of heart failure increase from the mid-20s onwards, meaning that a large proportion of those affected require continuous treatment.
In recent decades, survival rates have improved significantly; the aim of treatment is no longer for patients to survive, but to lead as good and active a life as possible. In this context, a project on the life chances of patients was carried out between 2002 and 2005 in order to find out more about family and career opportunities and to look for ways of optimizing care.
It is usually assumed that the individual areas of existence show consistently positive or rather disadvantageous patterns. However, this is not the case, as people with a very good career may well be psychologically burdened or perceive themselves to be disadvantaged in some way, nor does the performance of the heart necessarily determine the subjective assessment of one's own success.
The project was funded by the German Research Foundation (DFG-Az. GE 1167/2-1 and WE 2670/1-1), the project leaders were Siegfried Geyer for the social-scientific-psychological part and Armin Wessel for the pediatric-cardiological part.
The 361 patients between the ages of 14 and 45 who were included in the study came from the Pediatric Cardiology Department at Göttingen University Hospital. The study has been completed, the results have been published and a symposium was held at the end of the study to which the patients and their relatives, self-help groups and physicians were invited.
The results in brief:
Life chances at work: With regard to professional careers, it was found that around 11% never took up a profession. However, the patients who entered working life had careers that did not differ from the careers of the general population.
A higher proportion of them are employed part-time, but their job satisfaction does not differ from that of comparison persons of the same age. These were unexpected and rather positive findings.
The chances of moving up and down the social ladder were also no lower than those of comparison persons who were not ill. This is largely due to the fact that the patients were supported much more than usual by their parents, who invested more in their children's opportunities and looked after them more intensively. It will be necessary to investigate whether these positive career trajectories continue through the fifth decade of life.
Marriage and family: Patients have fewer children overall and fewer start a family than in the general population.
Mental health: At the beginning of the study, we assumed that patients were more stressed than their peers in the general population. This did not prove to be the case, and people with congenital heart defects should not be viewed from the perspective of psychopathology. Although they show slightly higher levels of depression and anxiety, the values for women are still within the normal range. Men are consistently more stressed than women, they suffer more from their congenital heart defect. This can be attributed to a large extent to the effects of body image. While women can cope well with the possibly reduced performance of their heart and the majority are not bothered by the surgical scar, men do not consider their body strong enough and suffer as a result. The psychological stress results for the most part from these perceived deficits in physical performance.
Overall, the project has provided insights into the improved care of patients with congenital heart defects. In addition to the increase in knowledge about the long-term course of congenital heart defects, it has been very successful scientifically; a total of 17 mostly international publications have been produced, plus one habilitation, five doctorates and over 20 national and international lectures.
Publications from the project:
Geyer, S., Norozi, K., Buchhorn, R., & Wessel, A. 2009, "Chances of employment in women and men after surgery of congenital heart disease: Comparisons between patients and the general population", Congenital Heart Disease 4: 25-33.
Geyer, S., Norozi, K., Wessel, A., Buchhorn, R., & Zoege, M. 2008, "Life chances after congenital heart disease surgery" In: The blind spot. Inequalities in health care K. Tiesmeyer et al. (eds.) Huber, Bern: 77-92.
Geyer, S., Norozi, K., Zoege, M., Buchhorn, R., & Wessel, A. 2007, "Life chances after surgery of congenital heart disease: The influence of cardiac surgery on intergenerational social mobility. A comparison between patients and general population data", Journal of Cardiovascular Prevention and Rehabilitation 14: 128-134.
Geyer, S., Hessel, A., Kempa, A., Zoege, M., Norozi, K., Wessel, A., & Albani, C. 2006, "Psychological symptoms and body image in patients after congenital heart disease surgery: comparisons between patients and the general population", Psychotherapie, Psychosomatik, Medizinische Psychologie 56: 425-431.
Geyer, S., Norozi, K., Zoege, M., Kempa, A., Buchorn, R., & Wessel, A. 2006, "Psychological symptoms of patients after surgery of congenital heart disease (CHD)", Cardiology in the Young 16: 540-548.
Geyer, S., Zoege, M., Norozi, K., Kempa, A., Buchhorn, R., & Wessel, A. 2008, "Study Participation and Nonresponse in a Population of Adolescents and Adults with Operated Congenital Heart Disease (GUCH Patients)", Congenital Heart Disease 3: 26-32.
Norozi, K., Bahlmann, J., Raab, B., Alpers, V., Arnhold, J., Kühne, T., Klimes, K., Zoege, M., Geyer, S., Wessel, A., & Buchhorn, R. 2007, " A prospective, randomized, double-blind, placebo controlled trial of beta-blockade in patients who have undergone surgical correction of tetralogy of Fallot", Cardiology in the Young 17: 372-379.
Norozi, K., Buchhorn, R., Wessel, A., Bahlmann, J., Raab, B., Geyer, S., Kühne, T., Beibei, L., Werdan, K., & Loppnow, H. 2008, "Beta-Blockade Does Not Alter Plasma Cytokine Concentrations and Ventricular Function in Young Adults With Right Ventricular Dysfunction Secondary to Operated Congenital Heart Disease", Circulation Journal 72: 747-752.
Norozi, K., Buchhorn, R., Bartmus, D., Alpers, V., Arnhold, J. O., Schoof, S., Zoege, M., Binder, L., Geyer S, & Wessel, A. 2006, "Elevated brain natriuretic peptide and reduced exercise capacity in adult patients operated on for tetralogy of fallot is due to biventricular dysfunction as determined by the myocardial performance index", Americal Journal of Cardiology 97: 1377-1382.
Norozi, K., Wessel, A., Alpers, V., Arnhold, J. O., Geyer, S., Zoege, M., & Buchorn, R. 2006, "Incidence and risk distribution of Heart Failure in Adolescents and adults with congenital heart disease after cardiac surgery", American Journal of Cardiology 97:1238-1243.
Norozi, K., Wessel A, Buchhorn, R., Alpers, V., Arnhold, J., Zoege, M., & Geyer, S. 2007, "Is the Ability Index Superior to the NYHA Classification for Assessing Heart Failure? - Comparison of two Classification Scales in Adolescents and Adults with Operated Congenital Heart Defects", Clinical Research in Cardiology 96: 1-6.
Norozi, K., Buchorn, R., Alpers, V., Arnhold, J. O., Schoof, S., Zoege, M., Geyer, S., & Wessel, A. 2005, "Relation of systemic ventricular function quantified by myocardial performance index (Tei) to cardiopulmonary exercise capacity in adults after mustard procedure for transposition of the great arteries", American Journal of Cardiology 96: 1721-1725.
Norozi, K., Zoege, M., Buchorn, R., Wessel, A., & Geyer, S. 2006, "The influence of congenital heart disease on psychological conditions in adolescents and adults after corrective surgery", Congenital Heart Disease 1: 282-288.
Norozi, K., Wessel, A., Alpers, V., Arnhold, J. O., Binder, L., Geyer, S., Zoege, M., & Buchhorn, R. 2007, "Chronotropic Incompetence in Adolescents and Adults With Congenital Heart Disease After Cardiac Surgery", Journal of Cardiac Failure 13: 263-268.
Norozi, K., Buchhorn, R., Yasin, A., Geyer, S., Binder, L., Seabrook, J. A., & Wessel, A. 2011, "Growth differentiation factor 15: An additional diagnostic tool for the risk stratification of developing heart failure in patients with operated congenital heart defects?", American Heart Journal 162: 131-135.
Nothroff J, Norozi, K., Alpers, V., Arnhold, J. O., Wessel, A., Ruschewski, W., & Buchhorn, R. 2006, "Pacemaker implantation as a risk factor for heart failure in young adults with congenital heart disease", Pacing Clinical Electrophysiology 29: 386-392.
Schoof, S., Norozi, K., Buchhorn, R., Geyer, S., Zoege, M., Kempa, A., Alpers, V., Arnhold, J., & Wessel A 2005, "Do hemodynamic parameters of women and men differ more than 20 years after surgery for congenital heart disease?", Journal of Cardiology 94: 633.