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Transplant center practices for psychosocial assessment and management of pediatric hematopoietic stem cell donors

Bone Marrow Transplantation volume 54, pages 1780–1788 (2019)Cite this article

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Abstract

Understanding the potential emotional and psychological risks of pediatric sibling HSC donation is an area of research that remains in its infancy. A cross-sectional survey was distributed electronically to directors at all CIBMTR and EBMT centers to describe current transplant center practices for obtaining assent, preparation for the physical/emotional experiences of donation, and monitoring the post-donation well-being of pediatric donors (<18 years of age). Respondents were 45/91 (49%) and 66/144 (46%) of CIBMTR and EBMT centers, respectively. Although 78% of centers reported having a mechanism in place to ensure donor free assent, centers also reported only limited assessment of psychosocial suitability to manage the emotional risks of donation. More than half of centers reported no psychosocial follow-up assessment post-donation. Few centers have policies in place to address donor psychological needs. Future investigations should include medical and psychosocial outcomes following full integration of comprehensive psychosocial screening and surveillance of pediatric donors.

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Acknowledgements

This research was conducted in collaboration with the Pediatric Diseases Working Party of the European Society for Blood and Marrow Transplantation (EBMT) and the Center for International Blood and Marrow Transplant Research (CIBMTR).

The CIBMTR is supported primarily by Public Health Service Grant/Cooperative Agreement 5U24CA076518 from the National Cancer Institute (NCI), the National Heart, Lung and Blood Institute (NHLBI) and the National Institute of Allergy and Infectious Diseases (NIAID); a Grant/Cooperative Agreement 1U24HL138660 from NHLBI and NCI; a contract HHSH250201700006C with Health Resources and Services Administration (HRSA/DHHS); three Grants N00014-17-1-2388, N00014-17-1-2850, and N00014-18-1-2045 from the Office of Naval Research; and grants from Adaptive Biotechnologies; *Amgen, Inc.; Anonymous donation to the Medical College of Wisconsin; Astellas Pharma US; Atara Biotherapeutics, Inc.; Be the Match Foundation; *Bluebird Bio, Inc.; *Bristol Myers Squibb Oncology; *Celgene Corporation; *Chimerix, Inc.; *CytoSen Therapeutics, Inc.; Fred Hutchinson Cancer Research Center; Gamida Cell Ltd; Gilead Sciences, Inc.; HistoGenetics, Inc.; Immucor; *Incyte Corporation; Janssen Scientific Affairs, LLC; *Jazz Pharmaceuticals, Inc.; Karius, Inc.; Karyopharm Therapeutics, Inc.; *Kite Pharma, Inc.; Medac, GmbH; *Mediware; The Medical College of Wisconsin; *Merck & Co, Inc.; *Mesoblast; MesoScale Diagnostics, Inc.; Millennium, the Takeda Oncology Co.; *Miltenyi Biotec, Inc.; Mundipharma EDO; National Marrow Donor Program; Novartis Pharmaceuticals Corporation; PCORI; *Pfizer, Inc; *Pharmacyclics, LLC; PIRCHE AG; *Sanofi Genzyme; *Seattle Genetics; Shire; Spectrum Pharmaceuticals, Inc.; St. Baldrick’s Foundation; Swedish Orphan Biovitrum, Inc.; *Takeda Oncology; and University of Minnesota. The views expressed in this article do not reflect the official policy or position of the National Institute of Health, the Department of the Navy, the Department of Defense, Health Resources and Services Administration (HRSA) or any other agency of the U.S. Government.

*Corporate Members

Author information

Authors and Affiliations

  1. Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health Bethesda, Bethesda, MD, USA

    Lori Wiener & Nirali N. Shah

  2. Medical College of Wisconsin, Department of Pediatrics, Division of Hematology, Oncology and Blood and Marrow Transplant, Milwaukee, WI, USA

    Jennifer A. Hoag

  3. Pediatric Hematology/Oncology/Blood & Marrow Transplant Program, Alberta Children’s Hospital, Calgary, AB, Canada

    Wendy Pelletier & Gregory Guilcher

  4. CIBMTR® (Center for International Blood and Marrow Transplant Research), Department of Medicine, Medical College of Wisconsin, Milwaukee, WI, USA

    Bronwen E. Shaw & Brent Logan

  5. Division of Hematology, Oncology, and BMT, Children’s Hospital Los Angeles, Los Angeles, CA, USA

    Michael A. Pulsipher

  6. Departments of Medicine, Psychiatry, Clinical and Translational Science, University of Pittsburgh, Pittsburgh, PA, USA

    Jessica Bruce & Galen E. Switzer

  7. Department for Children and Adolescents, Division for Stem Cell Transplantation and Immunology, University Hospital Frankfurt, Frankfurt am Main, Germany

    Peter Bader & Andre M. Willasch

  8. EBMT Paris study office/CEREST-TC, Department of Haematology, Saint Antoine Hospital, INSERM UMR 938, Paris, France

    Arnaud Dalissier

  9. Departments of Oncology and Paediatrics, University of Calgary, Calgary, AB, Canada

    Gregory Guilcher

  10. Anthony Nolan Research Institute, Anthony Nolan Trust, London, UK

    Chloe Anthias

  11. Department of Haemato-Oncology, Royal Marsden NHS Foundation Trust, London, UK

    Chloe Anthias

  12. National Marrow Donor Program/Be The Match®, Minneapolis, MN, USA

    Dennis L. Confer

  13. CIBMTR® (Center for International Blood and Marrow Transplant Research), National Marrow Donor Program/Be The Match, Minneapolis, MN, USA

    Jennifer A. Sees

  14. Center for Health Equity Research and Promotion, Veterans Affairs Pittsburgh Healthcare System, Pittsburgh, PA, USA

    Galen E. Switzer

Authors
  1. Lori Wiener
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  2. Jennifer A. Hoag
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  3. Wendy Pelletier
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  4. Nirali N. Shah
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  5. Bronwen E. Shaw
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  6. Michael A. Pulsipher
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  7. Jessica Bruce
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  8. Peter Bader
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  9. Andre M. Willasch
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  10. Arnaud Dalissier
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  11. Gregory Guilcher
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  12. Chloe Anthias
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  14. Jennifer A. Sees
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  15. Brent Logan
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  16. Galen E. Switzer
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Contributions

All authors participated in the design of the research, selection of the analytic strategy, and manuscript preparation. PB, AMW, and AD facilitated and managed sampling and center recruitment for EBMT centers and BES, JAS, and BL facilitated and managed sampling and center recruitment for CIBMTR centers. JB aggregated and managed data at the University of Pittsburgh and assisted with data analysis. All authors interpreted data and reviewed and approved the final manuscript.

Corresponding author

Correspondence to Galen E. Switzer.

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The authors declare that they have no conflict of interest.

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Wiener, L., Hoag, J.A., Pelletier, W. et al. Transplant center practices for psychosocial assessment and management of pediatric hematopoietic stem cell donors. Bone Marrow Transplant 54, 1780–1788 (2019). https://doi.org/10.1038/s41409-019-0515-3

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