ArticleBiology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation2018
Engaging Patients in Setting a Patient-Centered Outcomes Research Agenda in Hematopoietic Cell Transplantation.
Article in Biology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.
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.
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.
Who cites it
17 citing papers in PubMed.
- Patient-reported outcomes in chronic GVHD: instruments, clinical utility, and survivorship integration.Journal of patient-reported outcomes · 2026Review
- Assessing Quality of Life and Symptoms in Transplantation and CAR-T Recipients: Expert Panel Recommendations from the Survivorship Special Interest Group of ASTCT.Transplantation and cellular therapy · 2025Review
- Profoundly Depleted: Qualitative Study of Persistent Fatigue Following Hematopoietic Cell Transplant.Journal of pain and symptom management · 2025Article
- Article
- Prospective Association of Psychological Distress and Sexual Quality of Life Among Hematopoietic Stem Cell Transplant Survivors.Journal of clinical psychology in medical settings · 2025Article
- Patient engagement in hematopoietic stem cell transplantation and cell therapy: a survey by the EBMT patient engagement task force & transplantation complications working party.Bone marrow transplantation · 2024Article
- Financial Hardship in Childhood Cancer Survivors Treated with Hematopoietic Cell Transplantation: A Report from the Childhood Cancer Survivor Study.Transplantation and cellular therapy · 2023Article
- Managing Survivorship after Hematopoietic Cell Transplantation.Current hematologic malignancy reports · 2023Review
- Bringing Patient and Caregivers Voices to the Clinical Trial Chorus: A Report From the BMT CTN Patient and Caregiver Advocacy Task Force.Transplantation and cellular therapy · 2023Article
- Psychosocial and financial issues after hematopoietic cell transplantation.Hematology. American Society of Hematology. Education Program · 2021Article
- Biobehavioral Research and Hematopoietic Stem Cell Transplantation: Expert Review from the Biobehavioral Research Special Interest Group of the American Society for Transplantation and Cellular Therapy.Transplantation and cellular therapy · 2021Review
- Sexual Functioning in Long-Term Survivors of Hematopoietic Cell Transplantation.Transplantation and cellular therapy · 2021Article
- Late effects after ablative allogeneic stem cell transplantation for adolescent and young adult acute myeloid leukemia.Blood advances · 2020Article
- Adult Cancer Survivors' Engagement and Interest in Patient-Centered Research.Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology · 2020Article
- Partnering with frail or seriously ill patients in research: a systematic review.Research involvement and engagement · 2020Review
- Transgender individuals represent an overlooked population amongst stem cell donors.Bone marrow transplantation · 2019Article
- The Effect of Psychosocial Interventions on Outcomes for Caregivers of Hematopoietic Cell Transplant Patients.Current hematologic malignancy reports · 2018Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
29 authors.
Funding
Abstract
The goal of patient-centered outcomes research (PCOR) is to help patients and those who care for them make informed decisions about healthcare. However, the clinical research enterprise has not involved patients, caregivers, and other nonproviders routinely in the process of prioritizing, designing, and conducting research in hematopoietic cell transplantation (HCT). To address this need the National Marrow Donor Program/Be The Match engaged patients, caregivers, researchers, and other key stakeholders in a 2-year project with the goal of setting a PCOR agenda for the HCT community. Through a collaborative process we identified 6 major areas of interest: (1) patient, caregiver, and family education and support; (2) emotional, cognitive, and social health; (3) physical health and fatigue; (4) sexual health and relationships; (5) financial burden; and (6) models of survivorship care delivery. We then organized into multistakeholder working groups to identify gaps in knowledge and make priority recommendations for critical research to fill those gaps. Gaps varied by working group, but all noted that a historical lack of consistency in measures use and patient populations made it difficult to compare outcomes across studies and urged investigators to incorporate uniform measures and homogenous patient groups in future research. Some groups advised that additional pre-emptory work is needed before conducting prospective interventional trials, whereas others were ready to proceed with comparative clinical effectiveness research studies. This report presents the results of this major initiative and makes recommendations by working group on priority questions for PCOR in HCT.
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Registered trials
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.