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Can we agree on patient-reported outcome measures for assessing hematopoietic cell transplantation patients? A study from the CIBMTR and BMT CTN. Bone Marrow Transplant 2016 Sep;51(9):1173-9 PMID: 27159181

Pubmed ID

27159181

DOI

10.1038/bmt.2016.113

Abstract

Much research into the impact of hematopoietic cell transplantation (HCT) on recipients' symptoms, functioning and health-related quality of life uses diverse patient-reported outcome (PRO) measures. Robust conclusions regarding PROs in HCT patients are constrained by methodological issues, including the use of multiple different and noncomparable assessment measures. We reviewed 114 publications addressing PROs in HCT patients. Although three multi-item measures were most frequently used (FACT-BMT, n=28; European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C30, n=26; and SF-36, n=26), 25 additional measures were used in more than one study. Another 50 measures were used in single studies. Over 50% of studies used more than one measure. We recommend that the field agrees upon a set of measures to address the core domains important to patients, to reduce heterogeneity and allow comparisons across studies and between different populations. Measures should be available in a free and easily accessible manner internationally. We discuss the relative benefits of the National Institutes of Health-supported Patient-Reported Outcomes Measurement Information System (PROMIS) system to achieve these goals. To further address these issues, the Blood and Marrow Transplant Clinical Trials Network has recently created a task force to implement PROMIS measures alongside traditional PRO measures in future clinical trials. Robust comparisons between measures in this setting may allow for the development of a standard for HCT patients.

Author List

Shaw BE, Lee SJ, Horowitz MM, Wood WA, Rizzo JD, Flynn KE

Authors

Kathryn Eve Flynn PhD Associate Professor in the Medicine department at Medical College of Wisconsin
Mary M. Horowitz MD, MS Center Director, Professor in the Medicine department at Medical College of Wisconsin
J. Douglas D. Rizzo MD, MS Director, Ctr Associate Director, Professor in the Medicine department at Medical College of Wisconsin
Bronwen E. Shaw MBChB, PhD Professor in the Medicine department at Medical College of Wisconsin




Scopus

2-s2.0-84966474594   11 Citations

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

Hematopoietic Stem Cell Transplantation
Humans
Outcome Assessment (Health Care)
Patient Reported Outcome Measures
Quality Indicators, Health Care
Reproducibility of Results
Treatment Outcome
jenkins-FCD Prod-321 98992d628744e349846c2f62ac68f241d7e1ea70