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Centralized patient‐reported outcome data collection in transplantation is feasible and clinically meaningful
Author(s) -
Shaw Bronwen E.,
Brazauskas Ruta,
Millard Heather R.,
Fonstad Rachel,
Flynn Kathryn E.,
Abernethy Amy,
Vogel Jenny,
Petroske Charney,
Mattila Deborah,
Drexler Rebecca,
Lee Stephanie J.,
Horowitz Mary M.,
Rizzo J. Douglas
Publication year - 2017
Publication title -
cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 3.052
H-Index - 304
eISSN - 1097-0142
pISSN - 0008-543X
DOI - 10.1002/cncr.30936
Subject(s) - medicine , transplantation , odds ratio , confidence interval , hematopoietic cell , quality of life (healthcare) , pediatrics , haematopoiesis , stem cell , nursing , biology , genetics
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 .