A look back at the Pediatric and Primary Lymphedema Working Group’s 2-day Virtual Meeting!

The Pediatric and Primary Lymphedema Working Group (PPL WG) face-to-face meeting was scheduled in Helsinki but due to COVID-19, it had to be cancelled and was held online from June 4th to 5th, 2020.

This virtual meeting was chaired by Dr. Robert Damstra and attended by 14 healthcare professionals from 5 EU countries (Belgium, Finland, France, the Netherlands and UK), 2 PPL patient advocates of the European Patient Advocacy Group (ePAG) from Denmark and Portugal, and 3 collaborating HCP guests, from Finland and the UK.

Many topics were covered during this event! The first day started with a presentation by the PPL ePAG Co-Chair, Pernille Henriksen, concerning the ePAG video project. The idea is to generate short videos based on some of the PPL Dos and Don’ts factsheets for the patients such as cellulitis, compression and physical activity. She equally presented some initial findings of an online poll, that lymphedema patients participated in via 6 closed Facebook lymphedema patient support groups (from Denmark, England, France, Italy, Norway and Portugal), asking the question “During the COVID-19 lockdown period, has your lymphedema gotten worse, better or has there been no changes?” This led to a discussion on the possible causes for why certain patients may have gotten worse during this period and how these outcomes could be improved (e.g. promote more learning of self management techniques).

Marine Hurard, VASCERN Project Manager, gave an update on the VASCERN mobile app version 2 and the integration of the national network of referral centers. Professor Guillaume Jondeau, VASCERN Coordinator, joined the discussion. The group also talked about the PPL registry with the participation of Pim Kamerling, VASCERN Data Steward. Then the healthcare professionals discussed patient cases on the Clinical Patient Management System (CPMS).

On the second day, the PPL members talked about their ongoing research projects and scientific publications: VASCERN will have a Special Issue on the European Journal of Human Genetics and the PPL-WG will contribute with two articles. A presentation of the St George’s Hospital pediatric lymphedema audit was then given by two team members from St. George’s: the aim of this audit is to further advance the knowledge on PPL in the clinic and share information with other lymph-therapy teams. The group also discussed other topics, including outcome measures and disease-specific patient pathways. The meeting ended with another patient case discussion on the CPMS.

Thank you
to all of the PPL-WG members for their investment! They moved forward on many
projects during this 2-day meeting and we’re excited to see what’s next!