Challenges of Treatment Decisions for Children With Hematological Malignancies Who Relapse After Hematopoietic Stem Cell Transplant: A Health Care Provider Perspective.
In qualitative interviews with 32 pediatric HSCT health care professionals, the study identified decision-making themes and found that chance of cure, quality of life, child preference, and risks of serious health problems were highly prioritized after post-transplant relapse.
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In qualitative interviews with 32 pediatric HSCT health care professionals, the study identified decision-making themes and found that chance of cure, quality of life, child preference, and risks of serious health problems were highly prioritized after post-transplant relapse.
Research significance
The study provides evidence about clinician-reported priorities and biases, not treatment efficacy; it suggests—but does not test—that structured child-inclusive discussions, explicit communication of cure probability and health risks, and early palliative-care involvement could improve decision quality and reduce burdensome treatment misalignment.
Source abstract
BackgroundWhen a child or adolescent's disease relapses following hematopoietic stem cell transplantation (HSCT), families are often presented with the complex decision to pursue further treatment with curative intent. This study aims to describe the experiences of health care professionals (HCPs) regarding choices after the first HSCT and factors influencing decision-making.MethodThis qualitative study included staff and trainee physicians, nurse practitioners, and nurse coordinators. All participants had experience caring for children who had received HSCT. Sampling was purposive. We applied a descriptive phenomenological study design using semistructured interviews. Interviews were recorded and transcribed. Two researchers analyzed and coded transcript data. Themes and subthemes were identified. Ranking and scoring of the importance of factors, using a visual analogue scale (VAS) ranging from 0 to 10, that could influence decision-making were examined.ResultsA total of 32 HCPs participated. We identified four themes: (a) navigating self; (b) factors affecting decisions; (c) child and family support; and (d) decision-making biases. There were 12 subthemes. When ranking importance in a list of nine factors, higher ranking was associated with chance of cure, child's quality of life, and the child's preference of treatment. Importance scoring for these three factors plus risks of severe short- and long-term health issues received the highest scores (VAS 9 or 10).DiscussionProviding treatment with curative intent and involving the child in decision-making were important to HCPs. Chance of cure, child preference, quality of life, and risks of health issues were important factors. HCPs should consider the introduction of a palliative care team and discuss the chance of cure.