Ask, do not tell: consulting a patient advisory board to understand unmet needs of patients with GVHD in Europe
- PMID: 40044256
- DOI: 10.1016/S2352-3026(24)00357-0
Ask, do not tell: consulting a patient advisory board to understand unmet needs of patients with GVHD in Europe
Abstract
Graft-versus-host disease (GVHD) is a complication of hematopoietic cell transplantation (HCT) that has a low chance of complete remission and a substantial effect on morbidity and mortality. To better understand how to improve the field of GVHD research, management, and care, the cGVHD Eurograft Initiative organised a European community advisory board of patient advocates, with the assistance of the Lymphoma Coalition, to identify unmet needs. We present the results of this project in this Viewpoint, which identify unmet GVHD needs from the patient advocates' perspectives and provide five key actionable themes to improve GVHD management and care. The identified themes were: the need for reliable and tailored information, increased patient empowerment, access to professional dedicated care, optimal emotional support, and attention to the financial implications of GVHD, with improved communication as an overarching theme. This first step in patient-centred research opens the way to future collaborative initiatives by merging stakeholder perspectives to strive for better care and outcomes after HCT by addressing the most pertinent patient needs.
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Conflict of interest statement
Declaration of interests All patient advocate community advisory board members received a financial compensation from Lymphoma Coalition for participation in this project. HS reports having received personal fees from Incyte, Novartis, Sanofi, MAAT Pharma, Mallinckrodt, and from the Belgian Hematology Society; research grants from Novartis and the Belgian Hematology Society, which were both paid to her institution and not directly related to this work; and non-financial support (travel grants) from Gilead, Pfizer, Sanofi, the European Society for Blood and Marrow Transplantation (EBMT), and the Center for International Bone Marrow Transplantation Research (CIBMTR), linked to her voluntary work for these scientific societies. ES reports having received a personal fee from the Lymphoma Coalition; a free registration as a patient advocate from the EBMT; and travel grants or honoraria from Takeda, paid to Lymfklierkanker Vereniging Vlaanderen vzw. SKS reports having received grants from Incyte, Sanofi, and Kite, all made to BMT InfoNet, with all detailed information regarding sponsoring available on their website. MC reports having received honoraria and travel grants from Sanofi and Incyte. KA reports a travel grant from Gilead, not directly related to this work. HG reports having received consulting fees from Novartis, Gilead, Sanofi, Takeda and Therakos; and honoraria from Novartis, Gilead, Sanofi, BMS, Takeda, Therakos, and Neovii. AL reports having received consulting fees from Novartis and Sanofi; and honoraria from Novartis, Takeda, Therakos, and Neovii. DW received a research graft from Novartis; honoraria from Novartis, Incyte, Sanofi, Mallinckrodt, Neovii, and Takeda; and served on data safety monitoring boards for Novartis, Incyte, Sanofi, and Behring. AH reports grants from the German Cancer Aid, the German Ministry of Education and Research, the Bavarian Health and Food Safety Authority, the Bavarian Center for Cancer Research, the Fritz Thyssen Foundation, and the Comprehensive Cancer Center Eastern Bavaria (all paid to her institution); honoraria from the Institute for Medical and Pharmaceutical Proficiency Assessment; and voluntary work for the Bavarian Center for Cancer Research and Comprehensive Cancer Center Eastern Bavaria, the German Cancer Prevention Graduate School, Science Communication Working Group of the German Network for Health Services Research, and the Joint Academic Partnership “Health” of the Bavarian Academic Forum (BayWISS). All other authors declare no competing interests.