Schoemans, Helene and Stienissen, Elke and Goris, Kathy and Stewart, Susan K. and Cowden, Meredith and Arnahoutova, Kristina and Pavletic, Steven Z. and Greinix, Hildegard and Barata, Anna and Warwick, Lorna and Bolanos, Natacha and Barbosa, Isabel and Bouguet, Guy and Lhenry-Yvon, Isabelle and Manninen, Riikka-Leena and Pavukova, Simona and Tavori, Guy and van Amerongen, Marleen and Lawitschka, Anita and Schultz, Kirk R. and Wolff, Daniel and Herrmann-Johns, Anne (2025) Ask, do not tell: consulting a patient advisory board to understand unmet needs of patients with GVHD in Europe. LANCET HAEMATOLOGY, 12 (3). e214-e223. ISSN 2352-3026,
Full text not available from this repository. (Request a copy)Abstract
Graft-versus-host disease (GVHD) is a complication ofhematopoietic 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.
| Item Type: | Article |
|---|---|
| Uncontrolled Keywords: | STEM-CELL TRANSPLANTATION; QUALITY-OF-LIFE; CONSENSUS DEVELOPMENT PROJECT; HOST-DISEASE IV.; CLINICAL-TRIALS; ADULT PATIENTS; HEALTH; SURVIVORS; CARE; COMMUNICATION; |
| Subjects: | 600 Technology > 610 Medical sciences Medicine |
| Divisions: | Medicine > Lehrstuhl für Innere Medizin III (Hämatologie und Internistische Onkologie) |
| Depositing User: | Dr. Gernot Deinzer |
| Date Deposited: | 23 Apr 2026 11:38 |
| Last Modified: | 23 Apr 2026 11:38 |
| URI: | https://pred.uni-regensburg.de/id/eprint/67558 |
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