Julia Remmele1,2, Kathryn Yan3
1Department of Congenital Heart Disease and Pediatric Cardiology, German Heart Center Munich, Technical University of Munich, Munich, Germany; 2Institute of Preventive Pediatrics Technical University Munich, Munich, Germany; 3CDT Editorial Office, AME Publishing Company
Correspondence to: Kathryn Yan. CDT Editorial Office, AME Publishing Company. Email: editor@thecdt.org
Editor’s note
The science prize of the Kurt and Erika Palm Foundation 2022 was awarded on the occasion of the 48th Annual Meeting of the German Society for Prevention and Rehabilitation of Cardiovascular Diseases (DGPR) 2022 (June 24-25, 2022) in Berlin. The prize is aimed at research work in the field of prevention and rehabilitation of cardiovascular diseases and arteriosclerosis, preferably from a research area close to the patient. The paper, titled Endangered patients with congenital heart defect during transition—Germany-wide evaluation of medical data from National Register for Congenital Heart Defects (NRCHD) published on Cardiovascular Diagnosis and Therapy, written by Julia Remmele, et al was awarded the 2nd place. Taking this opportunity, we planned an interview with Ms. Julia Remmele, and would like to share it with our readers.
CDT: First congratulations on your article titled “Endangered patients with congenital heart defect during transition—Germany-wide evaluation of medical data from National Register for Congenital Heart Defects (NRCHD)” being awarded the second place of the Science Prize of the Kurt and Erika Palm Foundation 2022. Could you please share your feelings for receiving this prize?
Ms. Remmele: It is of course a great pleasure and an honour to receive such an award in a competitive process of submitted manuscripts.
Above all, it is also a great chance to get more attention to the topic and the great importance of registers that make such work with representative numbers possible.
I am grateful to my co-authors but also to the reviewers from the CDT who have been a great support.
CDT: Would you summarize the significance of your paper in layman's terms?
Ms. Remmele: The paper addresses the major issue of transition of patients with congenital heart defects. The transition phase is of fundamental importance for chronically ill children. In practice, major medical difficulties often arise during the transition phase from paediatrics to adult medicine. Therefore, it is particularly important to ensure a smooth transition from paediatric to adult care. In everyday clinical practice, we are often confronted with the phenomenon of loss-to-follow-up. Continuous care is essential for our patients with congenital heart defects, even in the early years of transition. Using data from the German National Register of Congenital Heart Defects (NRCHD), our study shows that adolescents and young adults with congenital heart defects had up to four cardiac secondary diagnoses and up to seven extracardiac secondary diagnoses.
These results highlight the true clinical relevance of this transition phase for adolescents and young adults with congenital heart defects. There is an urgent need to bridge the gap between paediatric and adult cardiology and to find sustainable strategies to not lose these young patients in this transition phase. Otherwise, early detection of the acquired secondary diagnoses that affect the lives of adolescents and young adults with congenital heart defects will fail with all its consequences. Only through targeted strategies to overcome this gap in care can prevention approaches become effective.
CDT: Your paper focused on the clinically relevant health-status of the transition population (between the ages from 15 to 25) among congenital heart defect (CHD) patients in Germany. What are the risks and opportunities for CHD patients of this special period?
Ms. Remmele: This is the age when life changes a lot - many things change. Young people, whether they have a heart defect condition or are healthy, take on more responsibility and begin to live an independent life. Up to now, parents have taken care of everyday matters and also of making and keeping doctor's appointments, but from the age of 18, full legal responsibility begins and the obligation to move from paediatric to adult cardiology. This also includes making and keeping doctor's appointments independently and on one's responsibility. It is therefore an important time and could be an opportunity to guide young adults with congenital heart defects as best as possible to ensure continuous medical care and to accompany and support an active lifestyle. The most important components are to promote empowerment through information. Where is the nearest specialised cardiologist in the region? Where do I turn when questions or uncertainties arise? Where can I find support? These are essential information in order not to lose patients in the transition from paediatric to adult medicine, because only then can the best possible care be guaranteed.
CDT: Would you share the current management of the transition population among CHD patients in Germany? Is there a need for improvement? If yes, how or from which aspect could the current system could be improved?
Ms. Remmele: Current transition management is more or less regulated by law. After the age of 18, patients must transition to adult care. In large heart centres, continuous care is usually guaranteed, and the age of the patient does not play a role here. Patients with complex heart defects in particular make use of such care in a heart centre during childhood. They can then continue to receive medical care at this heart centre beyond the age of 18, and continuous treatment can usually be provided at outpatient centres. But not every patient lives near a heart centre. Therefore, a local connection to paediatric cardiologists in the vicinity must also be available as an alternative, whereby the transition to adult medicine should be discussed and prepared together with the patient in good time.
This is probably where the starting point would be - early preparation for the change - information about where specialised cardiologists can be found in the region and early contact and cooperation between the heart centres and the established cardiologists. This works well in some cases, but in the transition phase there is a lack of clear structures, so especially patients with simple and sometimes moderate congenital heart defects get lost. Since we have more and more adults with CHD and the numbers continue to rise, it is also immensely important to ensure a well-developed network of ACHD-certified cardiologists.
CDT: How did you become involved in this research, and how would you describe the particular challenges?
Ms. Remmele: During my Master's degree at the Department of Preventive Paediatrics at the Technical University of Munich, I came to the German Heart Centre Munich through a research project by Dr. Jan Müller. The study "Cardiovascular and sports motor screening for health prevention in children and adolescents with congenital heart defects" investigated health-related physical fitness, arterial stiffness and health-related quality of life.
I was very impressed with, how well the children are now doing against the background of their medical history, thanks to medical progress. Fascinated by this, I wrote my master's thesis on "Motor skills in children and adolescents with congenital heart defects and the connection to health-related quality of life". However, I soon realised that this did not apply to all patients, because this study took place in the outpatient clinic of the heart centre, so I mainly saw the children and adolescents who came for routine check-ups. In a follow-up project, I had more contact with patients and families in the inpatient setting and was confronted with completely different problems and questions from the patients.
Research topics such as health services research, physical activity and health-related quality of life accompanied my further research work. The research focus shifted towards neurodevelopment, as neuroscience accompanied me for a long time. In this field, I developed my study "Neurodevelopment and health-related quality of life in patients with congenital heart disease and their twin siblings - Same Same, but different?", which I am still conducting until the end of this year.
The main challenge during the time was getting funded, but I think this is a challenge most researchers have to deal with.
CDT: Where do you see your research leading in the future?
Ms. Remmele: This is a good but also very big and complex question. To try to give a short answer: I think that the perspective and needs of the affected patients themselves and those of their families will play an increasingly important role, whether it is about new drugs, treatment methods, health-related quality of life or coping with everyday challenges.
In the meantime, the patient as an expert in his or her cause is also being heard more in research, which is good, but these results must also find their place in the everyday practice of treatment. Especially when it comes to the structural aspects of the health system, we need science to back this up, only then will changes be possible in this area.
CDT: Do you foresee any broader social implications or impact for your research?
Ms. Remmele: I think - and hope - that in the future there will be a closer exchange between patients, science and physicians because the challenges in patients with congenital heart defects have long since gone beyond ensuring the survival of the patient. Today, this works very well in the vast majority of cases. The focus now must be on helping affected patients live as good and fulfilling a life as possible with their congenital heart defect. From survival to life, so to speak. And this is not only the task of the interdisciplinary treatment team but also structural tasks, i.e. tasks relevant to the health system.
Expert introduction
Figure 1 Photo of Julia Remmele, MSc
Julia Remmele, MSc
Department of Congenital Heart Disease and Paediatric Cardiology, German Heart Centre of Munich, Germany
Julia Remmele (Figure 1) is a scientist at the German Heart Centre of Munich, Department of Congenital Heart Disease and Paediatric Cardiology.
After her state examination in physiotherapy and many years of professional experience with a focus on competitive sports and neurology, Julia completed a Bachelor of Science in Physiotherapy at the Dresden International University as well as a Master of Science (Health Science) at the Technical University of Munich in cooperation with the German Heart Center of Munich.
Since then, she has been working at the German Heart Center of Munich as a scientist and is also doing her PhD. Her research is focusing on the field of neurodevelopment, prevention and health-related quality of life in patients with congenital heart defects. Julia has been a Member of the Association of European Pediatric and Congenital Cardiology (AEPC), the German Society for Paediatric Cardiology and Congenital Heart Defects (DGPK) and the Competence Network for Congenital Heart Defects.
Acknowledgments
Funding: None.
Footnote
Provenance and Peer Review: This article was commissioned by the editorial office, Cardiovascular Diagnosis and Therapy for the special series “Interviews with Outstanding Authors”. The article did not undergo external peer review.
Conflicts of Interest: Both authors have completed the ICMJE uniform disclosure form. KY reports that she is a full-time employee of AME Publishing Company, the publisher of Cardiovascular Diagnosis and Therapy. JR declares no conflicts of interest.
Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the noncommercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.