The procedure remains the only curative option for many patients with leukemia, lymphoma, and related cancers. It works by replacing a patient’s damaged blood-forming system with healthy stem cells, either their own or a donor’s, to rebuild hematopoietic and immune function. Survival outcomes have improved steadily: registry data show three-year overall survival after allogeneic transplantation rose from 55.8 percent for procedures performed between 2012 and 2016 to 62.1 percent for those performed between 2017 and 2022, while survival after autologous transplantation increased from 79.6 to 82.6 percent. Yet the risks remain substantial. Chronic graft-versus-host disease, in which donor immune cells attack the recipient’s tissues, is associated with lower relapse risk but higher non-relapse mortality. Infection is the leading cause of death in the first 100 days after transplantation, and survivors frequently report prolonged physical, psychological, and social challenges.

Because HSCT is what researchers call a preference-sensitive decision, meaning the right choice depends partly on a patient’s own values and priorities, understanding how patients perceive it matters as much as understanding the clinical statistics. Shared decision-making, defined as a deliberative, bidirectional process in which clinicians and patients jointly exchange information and reach a mutually agreed choice, is widely endorsed for exactly this kind of situation. But when the review team, led by QingYing Wu and colleagues, pooled the qualitative evidence using the Joanna Briggs Institute methodology and content analysis, four overarching themes emerged that go far beyond a simple weighing of risks and benefits.

The first theme was constrained choice. Patients repeatedly described the transplant not as one option among several but as their only chance for survival, a perception generated by the aggressive nature of their disease. One patient told researchers that refusing the transplant felt like choosing certain death, saying there was no other way to survive. Another described the procedure as a light at the end of the tunnel, noting that with an aggressive form of cancer and only weeks to live, it was never really an option to decline. Because a cure was prioritized above all other goals and HSCT was seen as the sole pathway to it, many patients concluded that they had no choice at all.

The second dimension of constraint came from the medical system itself. Patients reported feeling that the decision had effectively been made the moment doctors recommended the transplant, or that packed treatment schedules left no room for deliberation. One patient recalled that once a donor was suddenly at the door, there was no going back, and that the pace was too fast. Others described handing themselves over entirely to their physicians, trusting that decades of clinical experience outweighed their own lack of medical knowledge. When doctors recommended against transplantation after pre-transplant evaluations, patients similarly accepted the procedure as disqualified, sparing themselves the task of deciphering complex medical rationales.

The second major theme was that decision-making is embedded in relational contexts. Patients rarely saw themselves as independent decision-makers; their choices were shaped by family attitudes, responsibilities to loved ones, and the availability of caregivers. Family encouragement was often a decisive motivator for accepting the transplant, while fear of becoming a burden weighed against it, prompting some patients to decline. For those considering allogeneic transplantation, the dilemma could be especially acute when family members served as potential donors: patients worried about causing physical harm to relatives or damaging family relationships. Responsibilities also pulled in the other direction. One mother who accepted the transplant explained that she did so mainly because her chronically ill daughter needed someone to care for her, and many parents said they sought the procedure to continue fulfilling their parental duties.

Trust in the healthcare team formed a third relational pillar. Physicians’ perceived expertise anchored patients’ confidence that the team would guide them toward the best clinical choice, while nurses were credited with easing anxiety throughout the decision-making period. This trust had a double edge. It provided security and reduced the burden of processing complex medical information, but it also meant that patients often relinquished decisional responsibility to medical authorities. The review’s authors note that when oncologists present HSCT, they rarely discuss alternatives, instead using directive statements such as this being the standard approach. Such communication can create the impression that the decision has already been made, leaving patients in a primarily compliant role. The authors caution that informed consent alone does not demonstrate that a patient’s values were genuinely integrated into the decision, nor that shared decision-making was actually achieved.

The third theme, described by the researchers as a hidden toll, concerned the intersecting burdens of cost and logistics. Transplantation carries direct medical costs that can exhaust household savings, alongside expenses for travel and accommodation near distant transplant centers, which insurance often does not cover. Some older patients who chose chemotherapy said the prohibitive expense directly prompted them to forgo transplantation. Practical hurdles compounded the financial strain: patients had to arrange transportation well in advance, navigate winter weather risks, and, in one documented case, confront such extreme geographic distance for a transnational transplant that the patient later said she would never consent to the procedure again. The authors connect this pattern to the emerging concept of time toxicity, the substantial time burden patients incur while seeking care, which for transplant candidates inevitably translates into financial toxicity through out-of-pocket costs and lost income.

The fourth theme involved anticipated threats to social participation and identity that patients began weighing before the decision was even made. Conditioning regimens used in HSCT can cause irreversible damage to fertility, and one young married patient described dread at the drastically reduced chance of pregnancy, compounded by the stigma of cancer and childlessness. Profound immune compromise after transplantation requires strict limits on outdoor activities, avoidance of crowds, and often prolonged cessation of work, leading some patients to fear that recovery would permanently end their careers. Bodily identity was also at stake; one patient who declined allogeneic transplantation described not wanting to put things from other people into her body. These concerns about reintegrating into society under one’s original identity emerged during the decision-making phase itself, not only afterward.

The review’s limitations deserve attention. Only English-language publications were included, most studies asked patients to recall their decisions retrospectively, with some interviews conducted three to twelve months after transplantation, introducing recall bias, and the synthesis focused solely on the patient perspective rather than those of caregivers or clinicians. Confidence in the findings was formally graded using the GRADE-CERQual approach across methodological quality, relevance, coherence, and data adequacy. Still, the authors argue the implications are clear: decision support for HSCT should move beyond information provision to assess whether patients genuinely understand the decision space, identify practical constraints such as caregiving availability and financial burden, and address longer-term concerns about fertility, employment, and social role. Clinicians should also clarify whether a patient’s preference for a clinician-led approach reflects an informed choice rather than passive acceptance. Future research, the team concludes, should track how patients’ perceptions evolve across the decision trajectory and rigorously test decision-support interventions that integrate values, relationships, and real-world circumstances into this high-stakes choice.

Subject of Research: Patient perceptions of hematopoietic stem cell transplantation decision-making in hematologic malignancies

Article Title: The perceptions of hematopoietic stem cell transplantation decision-making in patients with hematologic malignancies: a qualitative systematic review

Article References: Wu, Q., Chen, D., Yuan, F., Huang, S., Fu, P., Zhang, Y., & Wang, H. (2026). The perceptions of hematopoietic stem cell transplantation decision-making in patients with hematologic malignancies: a qualitative systematic review. Supportive Care in Cancer, 34(11), Article 1149. https://doi.org/10.1007/s00520-026-11381-8

Image Credits: AI Generated

DOI: 10.1007/s00520-026-11381-8

Keywords: hematopoietic stem cell transplantation, hematologic malignancies, shared decision-making, qualitative systematic review, financial toxicity, caregiving, decisional conflict, patient perceptions, transplant risks, social identity, blood cancer, decision support