Patient preferences for allogeneic haematopoietic stem cell transplantation: how much benefit is worthwhile from the patient’s perspective?

Abstract

Oncological studies have shown that patients consider small benefits sufficient to make adjuvant chemotherapy worthwhile. We sought to determine the minimal survival benefits that patients considered enough to legitimate allogeneic haematopoietic stem cell transplantation (HCT) and the factors associated with patient preferences. One hundred eighty-four patients having previously received allogeneic HCT at our centre were included and completed a questionnaire exploring patient expectations elicited by time trade-off scenarios as well as quality of life (QoL), symptoms of graft-versus host disease (GvHD) and sociodemographic characteristics. The majority of patients considered a minimal survival benefit of at least 5 (38.6%) or 10 years (41.9%) sufficient to justify HCT, with less than 5% considering survival < 1 year sufficient to warrant HCT. In terms of minimal cure rate, a cumulative 14.8% of patients accepted cure rates below 30% and 30.6% rates below 50%. Likelihood-ratio tests were significant for the effect of age at transplant on expected minimal survival (p = 0.007) and cure rates (p = 0.0001); that is, younger patients at HCT were more likely to accept smaller survival and cure rates. Pre-transplant risk score, QoL, GvHD score and sociological factors did not seem to influence patients’ expectations. In conclusion, patient expectations of treatment were much higher than what had been reported in oncological studies. Patients who experienced HCT considered a survival superior to 1 year and cure rates above 50% sufficient to make it worthwhile. Younger patients were more likely to accept smaller benefits; no other predictors for preferences could be detected.

Decisional Regret in Long-Term Australian Allogeneic Hematopoietic Stem Cell Transplantation Survivors: A Cross-Sectional Survey

“…Our results reveal that less than 10% of HSCT survivors regret having a transplant. This is consistent with previous U.S. surveys which report rates of decisional regret between 1% and 15% ( Cusatis et al, 2020 ; Leuthold et al, 2021 ; Mosher et al, 2011 ). In many ways, of course, this is unsurprising given the life-saving nature of transplant and the limited treatments options that are generally open to the vast majority of patients at the time that they are recommended to undergo HSCT.…”

“…Studies of the experience of survivors of cancer and transplantation have demonstrated that, in hindsight, some survivors come to regret the decision to proceed with treatment, particularly those who had a different treatment option open to them and whose quality of life (QoL), psychological and physical well-being, and relationships are diminished following treatment ( Leuthold et al, 2021 ). This feeling of discomfort or distress regarding a previous decision, in this case to proceed with a recommended course of treatment, is termed “decisional regret” ( Szproch & Maguire, 2022 ).…”

“…Few studies have investigated decisional regret in HSCT survivors. With the exception of a single registry study which conducted secondary analysis on 184 patients from 7 U.S. transplant centers, all others have been small single-center studies ( Cusatis et al, 2020 ; Drevdahl & Dorcy, 2012 ; Khemani et al, 2018 ; Leuthold et al, 2021 ; Mosher et al, 2011 ). These suggest that decisional regret is uncommon post-HSCT, occurring in less than 15% of HSCT survivors, and may be associated with poorer QoL and disease relapse post-transplant.…”