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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References
D’Souza A, Lee S, Zhu X, Pasquini M. Current use and trends in hematopoietic cell transplantation in the United States. Biol Blood Marrow Transplant. 2017;23:1417–21.
Passweg JR, Baldomero H, Bader P, Bonini C, Duarte RF, Dufour C, et al. Use of haploidentical stem cell transplantation continues to rise: the 2015 Europeon Society for Blood and Marrow Transplant activity survey report. Bone Marrow Transplant. 2017;52:811–7.
Shah NN, Wayne AS, Grady C, Fry T, Wendler D. Children as hematopoietic cell donors in research: when is it approvable? Bone Marrow Transplant. 2014;50:15–19.
Bollard CM, Krance RA, Heslop HE. Hematopoietic stem cell transplantation in pediatric oncology. In: Pizzo PA Poplack DG, (Eds.) Principles and practice of pediatric oncology. Vol. 6. Philadelphia, PA: Lippincott Williams & Wilkins; 2011. p. 467–9.
Wang Y, Wu D-P, Xu L-P, Liu K-Y, Zhang X-H, Xu Y, et al. Donor and recipient age, gender and ABO incompatibility regardless of donor source: validated criteria for donor selection for haematopoietic transplants. Leukemia. 2018;32:492–8.
Pulsipher MA, Levine JE, Hayashi RJ, Chan KW, Anderson P, Duerst R, et al. Safety and efficacy of allogeneic PBSC collection in normal pediatric donors: the pediatric blood and marrow consortium experience (PBMTC) 1996-2003. Bone Marrow Transplant. 2005;35:361–7.
American Academy of Pediatrics Committee on Bioethics. Children as hematopoietic stem cell donors. Pediatrics. 2010;125:392–404.
American Academy of Pediatrics Policy statement. Children as hematopoietic stem cell donors. Pediatrics. 2010;125:392–404.
Bauk K, D’Auria JP, Andrews A, Presler CM. The pediatric sibling donor experience in hematopoietic stem cell transplant: an integrative review of the literature. J Pediatr Nurs. 2013;28:235–42.
Pot-Mees C, Zeitlin H. Psychosocial consequences of bone marrow transplantation in children. J Psychosoc Oncol. 1987;5:73–81.
Shama W. The experience and preparation of pediatric sibling bone marrow donors. Soc Work Health Care. 1998;27:89–99.
Packman WL, Crittenden MR, Rieger Fischer JB, Schaeffer E, Bongar B, et al. Siblings’ perceptions of the bone marrow transplantation process. J Psychosoc Oncol. 1997;15:81–105.
Packman WL, Gong K, Van Zutphen K, Shaffer T, Crittenden M. Psychosocial adjustment of adolescent siblings of hematopoietic stem cell transplant patients. J Pediatr Oncol Nurs. 2004;21:233–48.
Packman WL, Weber S, Wallace J, Bugescu N. Psychological effects of hematopoietic SCT on pediatric patients, siblings, and parents: a review. Bone Marrow Transplant. 2010;45:1134–46.
Macleod KD, Whitsett SF, Mash EJ, Pelletier W. Pediatric sibling donors of successful and unsuccessful hematopoietic stem cell transplants (HSCT): A qualitative study of their psychosocial experience. J Pediatr Psychol. 2003;28:223–31.
Wilkins KL, Woodgate RL. Supporting siblings through the pediatric bone marrow transplant trajectory: Perspectives of siblings of bone marrow transplant recipients. Cancer Nurs. 2007;30:E29–E34.
Wiener LS, Steffen-Smith E, Battles HB, Love CP, Fry T. Sibling stem cell donor experiences at a single institution. Psychooncology. 2008;17:304–7.
Pentz RD, Alderfer MA, Pelletier W, Stegenga K, Haight AE, Hendershot KA, et al. Unmet needs of siblings of pediatric stem cell transplant recipients. Pediatrics. 2014;133:e1156–1162.
D’Auria JP, Fitzgerald TM, Presler CM, Kasow KA. Through the eyes of young sibling donors: The hematopoietic stem cell donation experience. J Pediatr Nurs. 2015;30:447–53.
Hutt D, Nehari M, Munitz-Shenkar D, Alkalay Y, Toren A, Bielorai B. Hematopoietic stem cell donation: psychological perspectives of pediatric sibling donors and their parents. Bone Marrow Transplant. 2015;50:1337–42.
Switzer GE, Bruce J, Kiefer DM, Kobusingye H, Drexler R, Besser RM, et al. Health-related quality of life among pediatric hematopoietic stem cell donors. J Pediatr. 2016;178:164–70.
Switzer GE, Bruce J, Pastorek G, Kiefer DM, Kobusingye H, Drexler R, et al. Parent versus child donor perceptions of the bone marrow donation experience. Bone Marrow Transplant. 2017;52:1338–41.
Pentz RD, Pelletier W, Alderfer MA, Stegenga K, Fairclough DL, Hinds PS. Shared decision-making in pediatric allogeneic blood and marrow transplantation: what if there is no decision to make? Oncologist. 2012;17:881–5.
White TE, Hendershot KA, Dixon MD, Pelletier W, Haight A, Stegenga K, et al. Family strategies to support siblings of pediatric hematopoietic stem cell transplant patients. Pediatrics. 2017;139:e20161057.
van Walraven SM, Straathof LM, Switzer GE, Lankester A, Korthof ET, Brand A, et al. Immediate and long-term somatic effects, and health-related quality of life of BM donation during early childhood. A single-center report in 210 donors. Bone Marrow Transplant. 2013;48:40–45.
Pelletier W, Schulte F, Guilcher GM. Pediatric hematopoietic stem cell donors: Need for longitudinal medical and psychosocial surveillance. Pediatric Blood & Cancer. 2015;62:737–8.
Anthias C, O’Donnell PV, Kiefer DM, Yared J, Norkin M, Anderlini P, et al. European Group for Blood and Marrow Transplantation Centers with FACT-JACIE Accreditation have significantly better compliance with related donor standards. Biol Blood Marrow Transplant. 2016;22:514–9.
FACT-JACIE International Standards for Hematopoietic Cell Therapy Product Collection, Processing, and Administration. Seventh Edition (2017). University of Nebraska Medical Center.
Bendorf A, Kerridge IH. Ethical issues in bone marrow transplantation in children. J Pediatr Child Health. 2011;47:614–9.
Bitan M, van Walraven SM, Worel N, Ball LM, Styczynski J, Torrabadella M, et al. Determination of eligibility in related pediatric hematopoietic cell donors: Ethical and clinical considerations. Recommendations for a working group of the Worldwide Network for Blood & Marrow Transplantation Association. Biol Blood Marrow Transplant. 2016;22:96–103.
Hoag J, Igler E, Karst J, Bingen K, Kupst, MJ Decision-making, knowledge, and psychosocial outcomes in pediatric siblings identified to donate hematopoietic stem cells. J Psychosoc Oncol 2018:1-16. [Epub ahead of print]
Stegenga K, Pentz RD, Alderfer MA, Pelletier W, Fairclough D, Hinds PS Child and parent access to transplant information and involvement in treatment decision making. West J Nurs Res 2018;1-6.
Ross LF, Antommaria AH. The need to promote all pediatric stem cell donors’ understanding and interests. Pediatrics. 2014;133:e1356–1357.
Wiener L, Kazak AE, Noll RB, Patenaude AF, Kupst MJ. Standards for the psychosocial care of children with cancer and their families: An introduction to the special issue. Pediatr Blood Cancer. 2015;62:S419–S424.
Lepola P, Needham A, Mendum J, Sallabank P, Neubauer D, de Wildt S. Informed conset for paediatric clinical trials in Europe. Arch Dis Child. 2016;101:1017–25.
Kowalczyk JR, Samardakiewicz M, Fitzgerald E, Essiaf S, Ladenstein R, Vassal G, et al. Towards reducing inequalities: European Standards of Care for Children with Cancer. Eur J Cancer. 2014;50:481–5.
Travado L, Reis JC, Watson M, Borras J. Psychosocial oncology care resources in Europe: A study under the European Partnership for Action Against Cancer (EPAAC). Psychooncology. 2017;26:523–30.
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.
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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.
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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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DOI: https://doi.org/10.1038/s41409-019-0515-3
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