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Thoughts from the threshold: patient and family hopes, fears, values, and goals at the onset of pediatric hematopoietic cell transplantation

Bone Marrow Transplantation volume 55, pages 1103–1113 (2020)Cite this article

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Abstract

Hematopoietic cell transplantation (HCT) affords curative potential for high-risk patients but also carries risk of morbidity and mortality. Early palliative care (PC) integration can aid in supporting patients and families, fostering goal-directed care, and maximizing quality-of-life throughout. However, little is known about patient and family hopes, worries, goals, or values in pediatric HCT. Through retrospective review of pretransplant PC consultations, this study sought to provide insights from this unique patient population. Across 100 initial PC encounters conducted between December 2015 and March 2018, patient and caregiver responses to five targeted questions were extracted and analyzed. Data analysis revealed themes related to patient quality-of-life, caregiver/parent role, hopes, and worries. The most commonly identified thematic responses within each topic area were patient quality-of-life “electronics/entertainment” (49%), caregiver/parent role “doing right by my child” (58%), hopes “cure” (83%), worries “potential side effects” (43%), other spirituality (34%), and resiliency (29%). These findings provide an understanding of the values, goals, priorities, hopes, and fears experienced by pediatric HCT patients and their families, which may help inform a targeted approach to improve communication and overall care throughout transplantation. Variability was noted, underscoring the importance of fostering flexible, patient/family-centered communication beginning in the pretransplant period.

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Authors and Affiliations

  1. Division of Quality-of-life and Palliative Care, Department of Oncology, St. Jude Children’s Research Hospital, Memphis, TN, USA

    Deena R. Levine, Angela Snyder, Erica C. Kaye & Justin N. Baker

  2. Texas Tech University Health Sciences Center Paul L. Foster School of Medicine, El Paso, TX, USA

    Kelsey Van Noy

  3. Department of Bone Marrow Transplantation and Cellular Therapy, St. Jude Children’s Research Hospital, Memphis, TN, USA

    Aimee C. Talleur

Authors
  1. Deena R. Levine
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  2. Kelsey Van Noy
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  3. Aimee C. Talleur
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  4. Angela Snyder
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  5. Erica C. Kaye
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  6. Justin N. Baker
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Correspondence to Deena R. Levine.

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Levine, D.R., Van Noy, K., Talleur, A.C. et al. Thoughts from the threshold: patient and family hopes, fears, values, and goals at the onset of pediatric hematopoietic cell transplantation. Bone Marrow Transplant 55, 1103–1113 (2020). https://doi.org/10.1038/s41409-020-0794-8

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