This Action brought together Chronic GvHD (cGvHD) researchers across Europe for the first time, creating a network of cross-disciplinary experts in the field.
Working Group 3
Socioeconomics/Quality of life
Dr Hélène Schoemans
Helene has been employed at the UZ Leuven (Belgium) since 2009 as a bone marrow transplantation physician. Her particular interests are Graft versus host disease, Survivorship, Patient Reported Outcomes, eHealth, Chronic care models and Quality of life. She is Chair of the ‘Late Effects Subcommittee’ of the Transplant Complications Working Party of the EBMT (European Society for Bone & Marrow Transplantation).
Dr Hélène Schoemans
CGvHD is a long term complex disease which has several co-morbidities and as such impacts on the quality of life of patients. By studying the societal impact of the disease via documented patient-reported outcome (PRO) assessments, including reduced working days due to hospital stays, EUROGRAFT improved the assessment of the burden on society of cGvHD at both the individual and European level.
Objectives and results
Dr Parisek conducted a qualitative analysis of allogeneic stem cell transplantation survivors in Germany.
Dr Wolff evaluated the cost of the survivorship care after allogeneic stem cell transplantation in 2 German reference centers.
Please follow the links for the original articles.
Dr Kilgour performed a systematic review of PRO assessment in cGVHD. The most reliable are HADs, NIH sheet and the Lee symptom scale (LSS), available in the Ressources page of this website !
Other working groups
This Working Group will assess the type and amount of biomarker information which is currently available in the literature and assess those which are worthy of further validation and study.
The NIH consensus criteria needs to be implemented uniformly if diagnosis and treatment of
cGVHD is to be optimized. The aim of this Working Group will be to aid in both the understanding and
implementation of the NIH Consensus via Training Schools and workshops.
Patients with cGvHD (30-50%) can become refractory to standard therapy, new treatment options and the assessment of current novel therapies are urgently needed to improve the long term outcome and quality of life. In this Working Group the Action will bring together experts in cGVHD and clinical trial development, especially in the realm of cellular therapies with the aim of developing concepts for new approaches including personalized approaches to therapy.