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Passweg JR, Baldomero H, Basak GW, Chabannon C, Corbacioglu S, Duarte R, et al. This COST Action is offering a new platform to develop common initiatives in cGvHD management to optimize long-term outcome of alloHSCT patients. This underpins one of the aims of COST Action EuroGraft to expand collaboration between European transplant centers and provide training for transplant programmes to foster a harmonized approach for diagnosis and treatment of cGvHD. Nevertheless, this survey highlights the need for the harmonization of current cGvHD management practices. Our results might therefore not be fully representative of common practice across Europe. Larger and/or more experienced alloHSCT centers may have better infrastructure and resources than centers with smaller transplant programs for real-world implementation of NIH response criteria. In line with this, the observed difference in the size of the transplant programs between responding and non-responding centers may explain, at least in part, reported results of limited use of PROs and biomarkers.
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The interpretation of this survey needs to take into account the limited response rate and the risk of a potential responder bias since information was likely provided mainly by centers with a particular interest in cGvHD and long-term care. Lack of time and lack of resources were the most common barriers for data collection. Notably, centers reporting use of PROs frequently collaborated with patient associations/support/advocacy groups ( n = 12 63.2%).
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The most common PRO measures used were the Lee cGvHD symptom scale ( n = 6), the FACT-BMT ( n = 6) and the NIH Form B ( n = 5). Standardized questionnaires or questionnaires developed for specific clinic or research purposes were both used for PRO data acquisition. When used, PRO questionnaires were essentially used as an integral part of clinical evaluation and mainly administered to patients using paper and pencil ( n = 19 86.4%).
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The collection of PROs in routine practice was limited ( n = 22 30.6%). In contrast, cell-based therapies were rarely used in prophylaxis ( n = 4 10.2%). Most frequently used therapies were mesenchymal stromal cells (MSCs) ( n = 27), extracorporeal photopheresis (ECP) closed system ( n = 24) and ECP open system ( n = 19).
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Approximately 54.2% ( n = 39) of responding centers reported using cell-based therapies for treatment of cGvHD. Collection and storage of patient samples for future assessment of biomarkers was not a common practice either, with less than one third of centers (22/72) collecting patient samples. Only a small fraction of centers, ( n = 5 6.9%) used specific biomarkers (e.g., Reg3-alpha, ST2, CXCL9 etc.) in the context of cGvHD. The top three reasons for not using these criteria were their complexity, the lack of suitability for use in children as well as time constraints. Almost all participating centers ( n = 68 94.4%) reported using NIH consensus criteria on cGvHD diagnosis and severity grading, while 51% of responders used NIH response criteria outside of the context of clinical trials. The majority of responding centers ( n = 65 90.3%) used their own database for collecting and storing patient information. Over 80% of respondents reported that post-transplant care was provided by multidisciplinary teams comprised of clinicians including subspecialists such as pulmonologists, gynecologists, ophthalmologists, and dermatologists.