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PERSPECTIVE article

Front. Oncol.
Sec. Pediatric Oncology
Volume 15 - 2025 | doi: 10.3389/fonc.2025.1535851
This article is part of the Research Topic Current Status and Future Directions of Pediatric Palliative Care in Oncology View all 6 articles

Beyond the Traditional Oncology Patient: The Role of Palliative Care in Patients with Sickle Cell Disease Receiving Stem Cell Transplantation or Gene Therapy

Provisionally accepted
Griffin S Collins Griffin S Collins 1*Deena R Levine Deena R Levine 1Alexis Leonard Alexis Leonard 2Akshay Sharma Akshay Sharma 3Liza-Marie Johnson Liza-Marie Johnson 4
  • 1 Department of Oncology, Division of Quality of Life and Palliative Care, St. Jude Children's Research Hospital, Memphis, United States
  • 2 Department of Hematology, St. Jude Children's Research Hospital, Memphis, United States
  • 3 Department of Bone Marrow Transplantation and Cellular Therapy, St. Jude Children's Research Hospital, Memphis, United States
  • 4 Department of Oncology, The Bioethics Program, St. Jude Children's Research Hospital, Memphis, United States

The final, formatted version of the article will be published soon.

    People with severe sickle cell disease (SCD) are now presented with increasing access to curative-intent therapies including allogeneic hematopoietic stem cell transplantation (HCT) and gene therapy (GT). These high-risk, high-reward therapies offer hope for cure and prevention of further injury due to SCD, but they are toxic therapies that carry risk of additional morbidity and mortality. People with severe SCD suffer due to extreme pain and serious multi-system injury which is compounded by the effects of systemic racism. The increasing availability of these complex, sometimes novel, therapies with curative-intent highlights the role for specialist palliative care (PC) in the care of people with severe SCD. Multidisciplinary PC teams employ a holistic, person-centered approach to alleviating suffering by accompanying patients through high-stakes decision making, coping with life-threatening illness, and symptom management.

    Keywords: Sickle Cell Disease, Palliative Care, Hematopoeietic stem cell transplantation, Genetic therapies, Health decision making, Symptom Management

    Received: 28 Nov 2024; Accepted: 16 Jan 2025.

    Copyright: © 2025 Collins, Levine, Leonard, Sharma and Johnson. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

    * Correspondence: Griffin S Collins, Department of Oncology, Division of Quality of Life and Palliative Care, St. Jude Children's Research Hospital, Memphis, United States

    Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.