VASCERN Spotlights: Dr. Robert Damstra
What is great about the ERNs is that they have given increased recognition to the field of rare diseases. For a very long time it was mainly secondary lymphedema (that is not a rare disease) that had all of the attention and now, thanks to VASCERN, we have a real platform for patients with primary and paediatric lymphedema.
This month in VASCERN Spotlights we interview Dr. Robert Damstra, a dermatologist from the Netherlands. Dr. Damstra, who is the Chair of VASCERN’s Pediatric and Primary Lymphedema Working Group (PPL-WG), shares with us how the specialty of lymphovascular medicine has evolved over the years, how VASCERN is providing much needed attention to Pediatric and Primary Lymphedema (PPL) and what he thinks the challenges are for VASCERN in the future.
1) What is your medical specialty and what interested you in this field?
I am a dermatologist at the Nij Smellinghe hospital in Drachten since 1992. I specialise in skin diseases. As dermatology is a visual specialty and I am a rather visual person it was this that first attracted me to this specialty. There is also lots of variation in this specialty; we see patients with very serious diseases and others with milder conditions. In the Netherlands we mix dermatology, phlebology and lymphology, and surgery when studying dermatology so it is a broad speciality where we can do lots of interesting things. In phlebology we see patients with venous problems and often these patients can also have lymphatic problems. Working in the department of dermatology, phlebology and lympho-vascular medicine, we established a team with medical and paramedical healthcare providers. We first saw patients with secondary lymphedema (usually a side-effect of breast cancer treatment) and then gradually began to see more and more cases of primary and paediatric lymphedema, which led to the creation of our centre and we developed new approaches and treatment modalities for patients. I continued research in specialized treatment for babies and children with lymphedema and in 2009 the centre at Nij Smellinghe hospital in Drachten attained the official title of Expert Centre for Lymphovascular Medicine from the Netherlands.
2) How did you become involved in VASCERN?
In 2016, the process of the ERNs started. We heard about the call via both the University Medical Center Groningen (UMCG) and via the patient groups of primary and secondary lymphedema in the Netherlands. Being an expert centre, we found getting involved as a natural next step in order to join efforts in Europe. So we contacted UMCG, and that’s where the application process started and we came into contact with other expert groups in Europe planning to join VASCERN. We developed a working group dedicated to paediatric and primary lymphedema. I found a huge enthusiasm among others working in the field of PPL to join efforts and exchange knowledge and develop common ideas. At that time we found Natascha Assies, a board member of the Dutch patient society, who was willing to join us and become member of the European Patient Advocacy Group (ePAG).
3) What is your greatest hope for VASCERN and the patients it treats?
It is great for us right now as lymphovascular diseases are recognized as a separate group of diseases of the lymphatics, with dedicated diagnostic and therapeutical approaches. Although we see overlap with vascular malformations, the diagnosis and treatment is different. In VASCERN we see opportunities for cooperation with the Vascular Anomalies (VASCA) working group. In the Netherlands we have already separated the two types of diseases, with vascular malformations being treated at the HECOVAN Expert Centre in Nijmegen (see Leo Schultze Kool VASCERN Spotlight article) and lymphedema patients coming to the Expert Center for Lymphovascular Diseases in Drachten, and we all refer patients accordingly. I hope that thanks to the creation of the PPL-WG in VASCERN, other countries will recognize and distinguish these two groups of conditions, so that patients receive the proper expertise from centres specializing in lymphedema care.
4) What have you accomplished in your medical career that you are most proud of?
When I started my medical career 26 years ago, lymphovascular medicine (and all things involved with lymphedema) was not recognized as a medical specialty. Today, although there are still challenges, with the creation of our Expert Centre for Lymphovascular Medicine in Drachten we now have a research group here and we have close cooperation with many other healthcare professionals and patient societies from all over the world. I am very proud that we have therefore raised lots of awareness for primary lymphedema, have helped lots of patients and have introduced several new therapeutical modalities to improve quality of life. What is great about the ERNs is that they have given increased recognition to the field of rare diseases. For a very long time it was mainly secondary lymphedema (that is not a rare disease) that had all of the attention and now, thanks to VASCERN, we have a real platform for patients with primary and paediatric lymphedema.
What I enjoy most is seeing that lymphedema expert groups, that previously did not work together, are now collaborating through our VASCERN network.
5) Are you currently involved in any research projects or clinical trials? If so can you please describe them briefly?
We are involved in many studies that involve patients with both primary and secondary lymphedema. We designed a quality of life questionnaire for compression tools, as compression is essential in the management of both primary and secondary lymphedema. We introduce new concepts of care such as chronic care management, positive health concepts and the bio-psycho-social model of the International Classification of Functioning, Disability and Health (ICF) by the World Health Organization (WHO). Furthermore, compression is a main interest for us, including new materials for compression therapy and compression in babies (a lot of discussion is being had on if we can start compression in babies or only after one year of age). I also participate in research projects in clinimetrics of lymphedema as well as new medical devices. All new concepts that can improve the quality of life of patients with lymphedema are of great interest to us as primary lymphedema is a lifelong disease. Interestingly, with lymphedema you stay with your dermatologist from childhood to adulthood, which is unlike many other rare diseases where there is a transition of care from childhood to adulthood at 18 years of age (e.g. paediatrics to internal medicine). Finally, we also have a gene project on-going that is searching for new PPL genes and we are working alongside Professor Raoul Hennekam at the Academic Medical Center in Amsterdam.
6) What VASCERN activities do you participate in and which are your favourite?
I am the Chair of the PPL-WG, with Sahar Mansour as Co-Chair, and I am also in the Patient Registry Working Group. We are producing lots of material and are currently seeing how we can make our registries FAIR and are testing outcome measures. What I enjoy most is seeing that lymphedema expert groups, that previously did not work together, are now collaborating through our VASCERN network. For a long time lymphedema treatment, especially secondary, was run by paramedical specialists with only a few doctors involved, and there were many different schools that worked independently. There were only a few multidisciplinary lymphedema centres and there was not a tradition of cooperation between these centres. While experts in vascular anomalies and hereditary haemorrhagic telangiectasia have had networks in place for a long time, PPL experts have not. So, it is very thrilling to see how in such a short time our PPL-WG has created such a friendly collaboration and produced so many outputs (e.g. Pills of Knowledge, Do’s and Don’ts) for the benefit of patients.
After the initial enthusiastic stage, the biggest challenge is the next step: a lot of us have put in a lot of unpaid time and effort and I think the main challenge ahead is how to make the ERNs sustainable.
7) What are the main achievements of VASCERN to date? What challenges does VASCERN still face?
VASCERN is performing incredibly well! Together we have produced many documents (Do’s and Don’ts factsheets, pills of knowledge, publications on outcome measures etc.), we have started using the CPMS, and we have started a pilot registry. I think this is due to the great collaboration between our patients and healthcare professionals and how we meet regularly at our monthly meetings and are supported by the coordination team.
After the initial enthusiastic stage, the biggest challenge is the next step: a lot of us have put in a lot of unpaid time and effort and I think the main challenge ahead is how to make the ERNs sustainable. There are the questions of finding additional financing that need to be explored and we need to demonstrate the benefits of belonging to the ERNs to healthcare professionals in order to keep them motivated and engaged. The Clinical Patient Management System (CPMS) is also a challenge, as we still require help to be able to use it to its full potential and this is time consuming. Also we need to try and involve more paramedical specialists and nurses in the ERNs, who are very important in the treatment of lymphedema and who work alongside the medical doctors. The short-term challenge for VASCERN and the ERNs is of course Brexit. We cannot go back in time, but I think that it would be disastrous for both the PPL-WG and the whole of VASCERN to lose these valuable healthcare professionals. Hopefully we will somehow find a way to continue to collaborate with the British centres post-Brexit.
To learn more about the PPL WG, including its members and the diseases it covers, click here
