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.