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Psychosocial services for primary immunodeficiency disorder families during hematopoietic cell transplantation: A descriptive study

  • Christina Mangurian (a1), Christopher Scalchunes (a2), Jennie Yoo (a1), Brent Logan (a3), Tiffany Henderson (a1), Sumathi Iyengar (a4), Heather Smith (a5) and Morton J. Cowan (a6)...



Caregivers for patients undergoing hematopoietic cell transplantation (HCT) are susceptible to significant psychosocial distress. This cross-sectional study aimed to describe psychosocial support services offered and used by caregivers of pediatric primary immune deficiency (PID) during HCT at 35 hospitals across North America.


Caregivers of pediatric patients with PID were recruited by e-mail to participate in an anonymous 140-question survey instrument between April and May 2016 (N = 171).


Of those meeting inclusion criteria (53%), family counseling services were only offered to fewer than half of caregivers (42%). Of the survey participants not offered counseling services, the majority desired family counseling (70%) and sibling counseling (73%). That said, when offered counseling, utilization rates were low, with 22% of caregivers using family counseling and none using sibling counseling.

Significance of results

These results indicate the need to offer and tailor counseling services for families throughout the HCT process. Further research should focus on reducing barriers to utilization of counseling services such as offering bedside counseling services, online modalities, and/or financial assistance.


Corresponding author

Author for Correspondence: Christina Mangurian, M.D., M.A.S., UCSF Department of Psychiatry Weill Institute for Neurosciences, San Francisco General Hospital, 1001 Portero Ave, Suite 7M, San Francisco, CA 94110. E-mail:


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Psychosocial services for primary immunodeficiency disorder families during hematopoietic cell transplantation: A descriptive study

  • Christina Mangurian (a1), Christopher Scalchunes (a2), Jennie Yoo (a1), Brent Logan (a3), Tiffany Henderson (a1), Sumathi Iyengar (a4), Heather Smith (a5) and Morton J. Cowan (a6)...


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