Faculty Collaboration Database

Engaging Patients in Setting a Patient-Centered Outcomes Research Agenda in Hematopoietic Cell Transplantation. Biol Blood Marrow Transplant 2018 Jun;24(6):1111-1118

Date

02/07/2018

Pubmed ID

29408289

Pubmed Central ID

PMC5993588

DOI

10.1016/j.bbmt.2018.01.029

Scopus ID

2-s2.0-85043400078 (requires institutional sign-in at Scopus site)   22 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.

Author List

Burns LJ, Abbetti B, Arnold SD, Bender J, Doughtie S, El-Jawahiri A, Gee G, Hahn T, Horowitz MM, Johnson S, Juckett M, Krishnamurit L, Kullberg S, LeMaistre CF, Loren A, Majhail NS, Murphy EA, Rizzo D, Roche-Green A, Saber W, Schatz BA, Schmit-Pokorny K, Shaw BE, Syrjala KL, Tierney DK, Ullrich C, Vanness DJ, Wood WA, Denzen EM

Authors

Mary M. Horowitz MD, MS Professor in the Medicine department at Medical College of Wisconsin
Wael Saber MD, MS Professor in the Medicine department at Medical College of Wisconsin
Bronwen E. Shaw MBChB, PhD Center Director, Professor in the Medicine department at Medical College of Wisconsin

MESH terms used to index this publication - Major topics in bold

Caregivers
Clinical Decision-Making
Health Priorities
Hematopoietic Stem Cell Transplantation
Humans
Patient Outcome Assessment
Patient Participation