Elisabeth Utens

Tell us a little about yourself and your work.
I am a associate professor for children’s psychology at Erasmus Medical Center Sophia-Children’s hospital in Rotterdam. I’ve worked with cardiac patients in the clinic in the past, but my focus has been on research for a while now. In close collaboration with cardiologists, we have conducted several long-term cohort studies that investigated the psychosocial as well as the cardiologic functioning of children, adolescents and young-adults, who underwent heart surgery for congenital heart defects in childhood.
What exactly is your research about?
We wanted to find out whether and how congenital heart defects and the cardiac condition of those afflicted affect the long-term psychosocial wellbeing of patients and their parents. The studies were done in cooperation with paediatric cardiologists and consisted of interviews, psychological  questionnaires  and cardiologic examinations. So people were examined by the cardiologist in the morning and then interviewed by a psychologist during the afternoon, or vice versa. Our cohorts consisted of children, adolescents, and adults with CoHD. We interviewed one cohort in 1989, at least 10 years after their first heart surgery, when they were between 10 and 25 years old. At the time of the second examination, in 2000, they were 20 to 35 years old. Now we are examining them for the third time, at between 30 and 55 years of age. So in fact this is a 30-year follow-up!.
And what were your main findings?
Interestingly, our main insight was that the quality of life for adults with congenital heart disease is, from the psychosocial point of view, overall at a similar level as that of the general population. And that’s despite the fact that their levels of education and occupation as well as their social-economic status are below average. While children with CoHD had a higher level of emotional and social problems such as anxiety, depression, behavioural difficulties, etc., they seem to develop a kind of resilience as they grow up. Some may call it denial or overcompensation, but you can also call it a fighting spirit.

So the psychosocial outcomes are better as CoHD children grow up? 
Yes, except for one group: young females between 20 and 25 years of age showed more psychological problems like anxiety, etc. Our interpretation is that this is caused by disease-specific uncertainties that affect their life choices, like pregnancy. Also, young women feel more sensitive about their scars than any other group. After the age of 28, this gap seems to close again. Since we are still gathering the results of the 30-year follow-up, we’ll have to wait a little while before the psychosocial outcomes are available for this first generation of persons with a congenital heart defect as they reach middle-age,

You mentioned that children with CoHD have a higher risk of psychosocial problems – what is the most difficult stage for the parents?
When the child is diagnosed with a congenital heart disease, whether before or after the birth, it’s a very stressful time for parents. They need to adjust to overwhelming changes in their lives. Operations and re-operations are also among the most difficult moments, especially when there are complications. And when heart children reach certain milestones, becoming more autonomous and asserting themselves, parents often have a hard time. Transitions are more challenging for children with CoHD and also for their parents. Even for grownups with CoHD, milestones remain challenging. Interestingly, we found no relation between the severity of the disease and psychosocial functioning – the level of psychosocial problems didn’t increase for patients with serious heart defects.

Finally, a personal question: what do you like to do when you’re not working?
My main passion is reading – I enjoy reading, mainly Scandinavian thrillers. Another passion is music. I play saxophone in a Blues & Soul band – I’ve played in a bigband before, and now I’m in a band with my husband. We perform about every three months. I also like languages; I’ve learned Italian and some Swedish.