Evidence map›Paper›PMID 38890544›Full record

ArticleBone marrow transplantation2024

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

Hélène Schoemans, Linda J Burns, Sarah J Liptrott, John Murray, Michelle Kenyon, Anna Barata, Natacha Bolaños, Isabelle Scholl, Betty Hamilton, Rachel Phelan and 11 more

Abstract read
In one paragraph

Article in Bone marrow transplantation, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Guideline
  2. Review
  3. Review
  4. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

21 authors.

Hélène SchoemansDepartment of Hematology, University Hospitals Leuven, Leuven, Belgium. helene.schoemans@uzleuven.be.ORCID http://orcid.org/0000-0002-7568-8239
Linda J BurnsCenter for International Blood and Marrow Transplant Research (CIBMTR), Milwaukee, WI, USA.ORCID http://orcid.org/0000-0003-1341-4424
Sarah J LiptrottNursing Research and Development Office, Oncology Institute of Southern Switzerland, Ente Ospedaliero Cantonale, Bellinzona, Switzerland.ORCID http://orcid.org/0000-0001-9499-6002
John MurrayHaematology and Transplant Unit, The Christie NHS FT, Manchester, UK.
Michelle KenyonDepartment of Haematology, King's College Hospital, London, UK.ORCID http://orcid.org/0000-0002-1859-6178
Anna BarataMassachusetts General Hospital, Boston, USA.
Natacha BolañosEBMT, Chair, Patient Advocacy Committee, Paris, France.
Isabelle SchollUniversitätsklinikum Hamburg-Eppendorf, Institut und Poliklinik für Medizinische Psychologie, Hamburg, Germany.
Betty HamiltonBlood and Marrow Transplant Program, Taussig Cancer Institute, Cleveland Clinic, Cleveland, OH, USA.
Rachel PhelanDivision of Pediatric Hematology, Oncology, Blood and Marrow Transplantation, Department of Pediatrics, Medical College of Wisconsin and Children's Wisconsin, Milwaukee, WI, USA.ORCID http://orcid.org/0000-0001-5252-9991
David BuchbinderDivision of Pediatric Hematology, Children's Hospital of Orange County, Orange, CA, USA.
Olaf PenackEBMT Transplant Complications Working Party, Paris, France.
Ivan MoiseevEBMT Transplant Complications Working Party, Paris, France.
William BorelandEBMT Transplant Complications Working Party, Paris, France.
Christophe PeczynskiEBMT Transplant Complications Working Party, Paris, France.ORCID http://orcid.org/0000-0002-3829-0088
Sabina De GeestDepartment of Public Health and Primary Care, ACCENT VV, KU Leuven - University of Leuven, Leuven, Belgium.
Anna SuredaClinical Hematology Department, Institut Català d'Oncologia-Hospitalet, Institut de Ciències Biomèdiques de Bellvitge (IDIBELL), Universitat de Barcelona, Barcelona, 08908, Spain.ORCID http://orcid.org/0000-0002-1238-6970
John A SnowdenSheffield Blood & Marrow Transplant and Cellular Therapy Programme, Department of Haematology, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.
Bronwen ShawCIBMTR, Department of Medicine, Medical College of Wisconsin, Milwaukee, WI, USA.ORCID http://orcid.org/0000-0003-3317-1896
Zinaida Peric *EBMT Transplant Complications Working Party, Paris, France.ORCID http://orcid.org/0000-0001-9458-8025
Nicolaus Kroeger *University Medical Center, Hamburg, Germany.ORCID http://orcid.org/0000-0001-5103-9966

Funding

Data Resource for Analyzing Blood &Marrow TransplantsU24CA076518 · NCI · MEDICAL COLLEGE OF WISCONSIN · PI Amy M Moskop, Bronwen Shaw · 1998 to 2026
$105.2M
NCI NIH HHS U24 CA076518
6 · The paper itself

Abstract

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.

Indexed as

Hematopoietic Stem Cell TransplantationPatient ParticipationAdultCell- and Tissue-Based TherapyCross-Sectional StudiesFemaleHumansMaleMiddle AgedPatient Reported Outcome MeasuresSurveys and Questionnaires

Identifiers

PMID38890544
PMCPMC11371514

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.