Patient engagement in hematopoietic stem cell transplantation and cell therapy: a survey by the EBMT patient engagement task force & transplantation complications working party

• Published in: Bone marrow transplantation (Basingstoke) 2024-09, Vol.59 (9), p.1286-1294
• Main Authors: Schoemans, Hélène, Burns, Linda J., Liptrott, Sarah J., Murray, John, Kenyon, Michelle, Barata, Anna, Bolaños, Natacha, Scholl, Isabelle, Hamilton, Betty, Phelan, Rachel, Buchbinder, David, Penack, Olaf, Moiseev, Ivan, Boreland, William, Peczynski, Christophe, De Geest, Sabina, Sureda, Anna, Snowden, John A., Shaw, Bronwen, Peric, Zinaida, Kroeger, Nicolaus
• Format: Article
• Language: English
• Subjects: 692/308/174; 692/308/2779; Adult; Bone marrow transplantation; Cell Biology; Cell therapy; Cell- and Tissue-Based Therapy - methods; Cognitive ability; Cross-Sectional Studies; Data collection; Data recovery; Female; Hematology; Hematopoietic Stem Cell Transplantation - methods; Hematopoietic stem cells; Humans; Internal Medicine; Male; Medicine; Medicine & Public Health; Middle Aged; Patient Participation; Patient Reported Outcome Measures; Patients; Public Health; Research projects; Stem cell transplantation; Stem Cells; Surveys; Surveys and Questionnaires; Therapy; Transplantation
• ISSN: 0268-3369; 1476-5365; 1476-5365
• DOI: 10.1038/s41409-024-02290-7

The EBMT (European Blood and Marrow Transplantation Society) aims to connect patients, the scientific community, and other stakeholders to improve hematopoietic stem cell transplantation and cellular therapy outcomes. We performed a cross-sectional online survey to understand the perceptions regarding Patient Reported Outcomes (PROs) and Patient Active Involvement in Research (PAIR) in over 800 stakeholders ( n  = 813). Patients ( n  = 278) and health care professionals (HCPs) ( n  = 351) were compared. We observed high openness for EBMT PRO collection ( n  = 680, 84.5% across stakeholders’ groups; patients n  = 256, 93.1% versus HCPs n  = 273, 78.4% [ p