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Centralized patient-reported outcome data collection in transplantation is feasible and clinically meaningful.

Publication ,  Journal Article
Shaw, BE; Brazauskas, R; Millard, HR; Fonstad, R; Flynn, KE; Abernethy, A; Vogel, J; Petroske, C; Mattila, D; Drexler, R; Lee, SJ; Rizzo, JD ...
Published in: Cancer
December 1, 2017

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.

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Published In

Cancer

DOI

EISSN

1097-0142

Publication Date

December 1, 2017

Volume

123

Issue

23

Start / End Page

4687 / 4700

Location

United States

Related Subject Headings

  • Young Adult
  • Transplantation, Homologous
  • Transplantation Conditioning
  • Quality of Life
  • Prospective Studies
  • Prognosis
  • Patient Reported Outcome Measures
  • Oncology & Carcinogenesis
  • Neoplasm Staging
  • Middle Aged
 

Citation

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Shaw, B. E., Brazauskas, R., Millard, H. R., Fonstad, R., Flynn, K. E., Abernethy, A., … Rizzo, J. D. (2017). Centralized patient-reported outcome data collection in transplantation is feasible and clinically meaningful. Cancer, 123(23), 4687–4700. https://doi.org/10.1002/cncr.30936
Shaw, Bronwen E., Ruta Brazauskas, Heather R. Millard, Rachel Fonstad, Kathryn E. Flynn, Amy Abernethy, Jenny Vogel, et al. “Centralized patient-reported outcome data collection in transplantation is feasible and clinically meaningful.Cancer 123, no. 23 (December 1, 2017): 4687–4700. https://doi.org/10.1002/cncr.30936.
Shaw BE, Brazauskas R, Millard HR, Fonstad R, Flynn KE, Abernethy A, et al. Centralized patient-reported outcome data collection in transplantation is feasible and clinically meaningful. Cancer. 2017 Dec 1;123(23):4687–700.
Shaw, Bronwen E., et al. “Centralized patient-reported outcome data collection in transplantation is feasible and clinically meaningful.Cancer, vol. 123, no. 23, Dec. 2017, pp. 4687–700. Pubmed, doi:10.1002/cncr.30936.
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 JD. Centralized patient-reported outcome data collection in transplantation is feasible and clinically meaningful. Cancer. 2017 Dec 1;123(23):4687–4700.
Journal cover image

Published In

Cancer

DOI

EISSN

1097-0142

Publication Date

December 1, 2017

Volume

123

Issue

23

Start / End Page

4687 / 4700

Location

United States

Related Subject Headings

  • Young Adult
  • Transplantation, Homologous
  • Transplantation Conditioning
  • Quality of Life
  • Prospective Studies
  • Prognosis
  • Patient Reported Outcome Measures
  • Oncology & Carcinogenesis
  • Neoplasm Staging
  • Middle Aged