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

Journal

Bone marrow transplantation
ISSN: 1476-5365
Titre abrégé: Bone Marrow Transplant
Pays: England
ID NLM: 8702459

Informations de publication

Date de publication:
18 Jun 2024
Historique:
received: 06 02 2024
accepted: 12 04 2024
revised: 05 04 2024
medline: 19 6 2024
pubmed: 19 6 2024
entrez: 18 6 2024
Statut: aheadofprint

Résumé

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 < 0.001]) and PAIR (n = 702, 87.3% across stakeholder groups; patients n = 256, 92.4% versus HCPs n = 296, 85.8% [p = 0.009]), with a significantly higher proportion of patients expressing interest compared to HCPs. Priority domains for PROs data-collection identified were the assessment of symptom experience, psychosocial and cognitive functioning. The most important issues for patients specifically were the data-collection of PROs reflecting cognitive function, the option of reporting data at home, the importance of identifying actionable targets to improve their recovery, and receiving feedback on their input when participating in research projects. Our multistakeholder approach suggests an added value to embracing patient engagement in the development of meaningful research and service design within the transplantation and cellular therapy community.

Identifiants

DOI: 10.1038/s41409-024-02290-7 PMID: 38890544
pubmed: 38890544
doi: 10.1038/s41409-024-02290-7
pii: 10.1038/s41409-024-02290-7
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Informations de copyright

© 2024. The Author(s), under exclusive licence to Springer Nature Limited.

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Auteurs

Hélène Schoemans (H)

Department of Hematology, University Hospitals Leuven, Leuven, Belgium. helene.schoemans@uzleuven.be.
Department of Public Health and Primary Care, ACCENT VV, KU Leuven - University of Leuven, Leuven, Belgium. helene.schoemans@uzleuven.be.
EBMT Transplant Complications Working Party, Paris, France. helene.schoemans@uzleuven.be.
ORCID: 0000-0002-7568-8239

Linda J Burns (LJ)

Center for International Blood and Marrow Transplant Research (CIBMTR), Milwaukee, WI, USA.
ORCID: 0000-0003-1341-4424

Sarah J Liptrott (SJ)

Nursing Research and Development Office, Oncology Institute of Southern Switzerland, Ente Ospedaliero Cantonale, Bellinzona, Switzerland.
Department of Nursing, Regional Hosptial of Bellinzona and Valli, Ente Ospedaliero Cantonale, Bellinzona, Switzerland.
ORCID: 0000-0001-9499-6002

John Murray (J)

Haematology and Transplant Unit, The Christie NHS FT, Manchester, UK.

Michelle Kenyon (M)

Department of Haematology, King's College Hospital, London, UK.
ORCID: 0000-0002-1859-6178

Anna Barata (A)

Massachusetts General Hospital, Boston, USA.
Harvard Medical School, Boston, USA.

Natacha Bolaños (N)

EBMT, Chair, Patient Advocacy Committee, Paris, France.
Lymphoma Coalition, Mississauga, ON, Canada.

Isabelle Scholl (I)

Universitätsklinikum Hamburg-Eppendorf, Institut und Poliklinik für Medizinische Psychologie, Hamburg, Germany.

Betty Hamilton (B)

Blood and Marrow Transplant Program, Taussig Cancer Institute, Cleveland Clinic, Cleveland, OH, USA.

Rachel Phelan (R)

Division of Pediatric Hematology, Oncology, Blood and Marrow Transplantation, Department of Pediatrics, Medical College of Wisconsin and Children's Wisconsin, Milwaukee, WI, USA.
ORCID: 0000-0001-5252-9991

David Buchbinder (D)

Division of Pediatric Hematology, Children's Hospital of Orange County, Orange, CA, USA.

Olaf Penack (O)

EBMT Transplant Complications Working Party, Paris, France.
Medical Clinic, Department for Haematology, Oncology and Tumorimmunology, Charité Universitätsmedizin Berlin, Berlin, Germany.

Ivan Moiseev (I)

EBMT Transplant Complications Working Party, Paris, France.
First Pavlov State Medical University of St Petersburg, St Petersburg, Russia.

William Boreland (W)

EBMT Transplant Complications Working Party, Paris, France.
EBMT Paris study office; Department of Haematology, Saint Antoine Hospital; INSERM UMR-S 938, Sorbonne University, Paris, France.

Christophe Peczynski (C)

EBMT Transplant Complications Working Party, Paris, France.
EBMT Paris study office; Department of Haematology, Saint Antoine Hospital; INSERM UMR-S 938, Sorbonne University, Paris, France.
ORCID: 0000-0002-3829-0088

Sabina De Geest (S)

Department of Public Health and Primary Care, ACCENT VV, KU Leuven - University of Leuven, Leuven, Belgium.
Institute of Nursing Science, Department Public Health, University of Basel, Basel, Switzerland.

Anna Sureda (A)

Clinical Hematology Department, Institut Català d'Oncologia-Hospitalet, Institut de Ciències Biomèdiques de Bellvitge (IDIBELL), Universitat de Barcelona, Barcelona, 08908, Spain.
ORCID: 0000-0002-1238-6970

John A Snowden (JA)

Sheffield Blood & Marrow Transplant and Cellular Therapy Programme, Department of Haematology, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.

Bronwen Shaw (B)

CIBMTR, Department of Medicine, Medical College of Wisconsin, Milwaukee, WI, USA.
ORCID: 0000-0003-3317-1896

Zinaida Peric (Z)

EBMT Transplant Complications Working Party, Paris, France.
Department of Hematology, University Hospital Centre Rijeka, Rijeka, Croatia.
ORCID: 0000-0001-9458-8025

Nicolaus Kroeger (N)

University Medical Center, Hamburg, Germany.
ORCID: 0000-0001-5103-9966

Classifications MeSH