Centralized patient-reported outcome data collection in transplantation is feasible and clinically meaningful. Cancer 2017 Dec 01;123(23):4687-4700
Date
08/18/2017Pubmed ID
28817182Pubmed Central ID
PMC5693638DOI
10.1002/cncr.30936Scopus ID
2-s2.0-85034085598 (requires institutional sign-in at Scopus site) 46 CitationsAbstract
BACKGROUND: Allogeneic hematopoietic cell transplantation (HCT) cures many patients, but often with the risk of late effects and impaired quality of life. The value of quantifying patient-reported outcomes (PROs) is increasingly being recognized, but the routine collection of PROs is uncommon. This study evaluated the feasibility of prospective PRO collection by an outcome registry at multiple time points from unselected HCT patients undergoing transplantation at centers contributing clinical data to the Center for International Blood and Marrow Transplant Research (CIBMTR), and then it correlated the PRO data with clinical and demographic data.
METHODS: The Functional Assessment of Cancer Therapy-Bone Marrow Transplant (FACT-BMT), 36-Item Short Form Health Survey (SF-36), and Pediatric Quality of Life Inventory measures were administered before HCT, on day 100, and at 6 and 12 months. Patients were recruited by the transplant center, but posttransplant PRO collection was managed centrally by the CIBMTR.
RESULTS: There were 580 eligible patients, and 390 (67%) enrolled. Feasibility was shown by high time-specific retention rates (176 of 238 at 1 year or 74%) and participant satisfaction. Factors associated with higher response rates were an age > 50 years (odds ratio [OR], 1.58; 95% confidence interval [CI], 1.03-2.41; P = .0355), white race (OR, 4.61; 95% CI, 2.66-7.99; P < .0001), and being married (OR, 2.28; 95% CI, 1.42-3.65; P = .0006) for adults and a higher family income for children (OR, 4.99; 95% CI, 2.12-11.75; P = .0002). Importantly, pre-HCT PRO scores independently predicted survival after adjustments for patient-, disease-, and transplant-related factors. The adjusted probabilities of 1-year survival were 56%, 67%, 75%, and 76% by increasing quartiles of the pre-HCT FACT-BMT score and 58%, 72%, 62%, and 82% by increasing quartiles of the pre-HCT SF-36 physical component score.
CONCLUSIONS: A hybrid model of local consent for centralized PRO collection is feasible, and pretransplant PROs provide critical prognostic information for HCT outcomes. Cancer 2017;123:4687-4700. © 2017 American Cancer Society.
Author List
Shaw BE, Brazauskas R, Millard HR, Fonstad R, Flynn KE, Abernethy A, Vogel J, Petroske C, Mattila D, Drexler R, Lee SJ, Horowitz MM, Rizzo JDAuthors
Ruta Brazauskas PhD Associate Professor in the Institute for Health and Equity department at Medical College of WisconsinKathryn Eve Flynn PhD Vice Chair, Professor in the Medicine department at Medical College of Wisconsin
Mary M. Horowitz MD, MS Professor in the Medicine department at Medical College of Wisconsin
J. Douglas Rizzo MD, MS Director, Center Associate Director, 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
AdolescentAdult
Aged
Aged, 80 and over
Child
Child, Preschool
Data Collection
Feasibility Studies
Female
Follow-Up Studies
Hematologic Neoplasms
Hematopoietic Stem Cell Transplantation
Humans
Male
Middle Aged
Neoplasm Staging
Patient Reported Outcome Measures
Prognosis
Prospective Studies
Quality of Life
Transplantation Conditioning
Transplantation, Homologous
Young Adult
