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

ABSTRACT

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.