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Author Notes:

Corresponding author: Linda J Burns, MD, Vice President and Medical Director, Medical Services, National Marrow Donor Program/Be The Match, Senior Scientific Director, Health Services Research Program, Center for International Blood and Marrow Transplant Research - Minneapolis, 500 N 5th St, Minneapolis, MN 55401-1206, Phone: 763-406-4273, lburns2@nmdp.org.

We thank the PCORI Program Officer, Yasmeen Long, for her assistance throughout the project.

We thank all members of the Working Groups, especially the patients and caregivers, and those who participated in the teleconferences, symposia and webinars for providing their unique perspectives that informed the research agenda.

We thank Kate Houg, Christa Meyer, Jaime Preussler, Lin-Win Mau, and Robynn Erdmann for project and symposia planning support, and Edmund Waller for critical review of the manuscript.

Declarations of Interest: none.

Subjects:

Research Funding:

This project was supported in part by a Patient-Centered Outcomes Research Institute Eugene Washington Engagement Award (PCORI EAIN-2956).

Keywords:

  • Science & Technology
  • Life Sciences & Biomedicine
  • Hematology
  • Immunology
  • Transplantation
  • Hematopoietic cell transplantation
  • Survivorship
  • Patient-centered outcomes
  • QUALITY-OF-LIFE
  • BONE-MARROW-TRANSPLANTATION
  • RANDOMIZED CONTROL TRIAL
  • ACUTE MYELOID-LEUKEMIA
  • FERTILITY PRESERVATION
  • HEMATOLOGICAL CANCER
  • CAREGIVERS
  • EDUCATION
  • SURVIVORS
  • FATIGUE

Engaging Patients in Setting a Patient-Centered Outcomes Research Agenda in Hematopoietic Cell Transplantation

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Journal Title:

Biology of Blood and Marrow Transplantation

Volume:

Volume 24, Number 6

Publisher:

, Pages 1111-1118

Type of Work:

Article | Post-print: After Peer Review

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.

Copyright information:

© 2018 American Society for Blood and Marrow Transplantation

This is an Open Access work distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (http://creativecommons.org/licenses/by-nc-nd/4.0/).

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