Prevalence of decisional regret among patients who underwent allogeneic hematopoietic stem cell transplantation and associations with quality of life and clinical outcomes.

BACKGROUND: Allogeneic hematopoietic stem cell transplantation (alloHCT) is potentially curative but with known negative effects on quality of life. In the current study, the authors investigated whether patients expressed regret after undergoing HCT and the relationships between clinical outcomes and quality of life. METHODS: Center for International Blood and Marrow Transplant Research data from 184 adults who completed the Functional Assessment of Cancer Therapy-Bone Marrow Transplant (FACT-BMT) before undergoing alloHCT and at day 100 were used. Additional time points were 6 months and 12 months. Regret was measured using a FACT-BMT item not included in scoring: "I regret having the bone marrow transplant." The authors evaluated FACT-BMT scores and regret using Student t-tests. Covariance pattern models were used to determine predictors of regret over time, including baseline characteristics and post-alloHCT outcomes (acute or chronic graft-versus-host-disease, disease recurrence). RESULTS: At 100 days, 6 months, and 12 months, approximately 6% to 8% of patients expressed regret; a total of 15% expressed regret at any time point. Regret was found to be associated with lower FACT-BMT scores at 6 months and 12 months (P < .001). Higher baseline FACT-BMT and social well-being scores were associated with a reduced risk of expressing regret. The risk of regretting transplantation was 17.5 percentage points (95% confidence interval, 5.5-29.7 percentage points) greater in patients who developed disease recurrence after HCT compared with patients who did not. CONCLUSIONS: Among patients who underwent alloHCT and lived to 100 days, the majority did not report regretting their transplantation. Regret was found to be related to disease recurrence. Social connectedness may serve as a protective factor against later regret. Future work should explore regret in other patient groups and use qualitative methods to inform best practices for reducing regret.

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

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.