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

Linda J. Burns, Beatrice Abbetti, Stacie D. Arnold, Jeffrey Bender, Susan Doughtie, Areej El-Jawahiri, Gloria Gee, Theresa Hahn, Mary M. Horowitz, Shirley Johnson, Mark Juckett, Lakshmanan Krishnamurit, Susan Kullberg, C. Fred LeMaistre, Alison Loren, Navneet S. Majhail, Elizabeth A. Murphy, Doug Rizzo, Alva Roche-Green, Wael SaberBarry A. Schatz, Kim Schmit-Pokorny, Bronwen E. Shaw, Karen L. Syrjala, D. Kathryn Tierney, Christina Ullrich, David J. Vanness, William A. Wood, Ellen M. Denzen

Research output: Contribution to journalArticlepeer-review

7 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)1111-1118
Number of pages8
JournalBiology of Blood and Marrow Transplantation
Volume24
Issue number6
DOIs
StatePublished - Jun 2018

All Science Journal Classification (ASJC) codes

  • Hematology
  • Transplantation

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