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Ethics and Economics

Monday March 28, 2022 - 19:20 to 20:30


336.5 Implementation and execution of organ viewing program for post - transplant patients

Denise M Alloway, United States

Clinical Social Worker
Solid Organ Transplant
Lucile Packard Children's Hospital Stanford


Implementation and execution of organ viewing program for post - transplant patients

Bianca Gregori1, Amy Kyi1, Denise Alloway1, Tamzen Hull1, Brittany Lawton1, Alexandra Ho1, Veronica Bautista1.

1Social Work, Lucile Packard Children's Hospital Stanford, Palo Alto, CA, United States

Introduction/Objective: Pediatric solid organ transplantation is a medically and psychosocially complex process requiring an interdisciplinary team to support successful outcomes. Research demonstrates significant posttraumatic stress (PTS) levels in children and adolescents who have undergone transplant1, as well as in their caregivers2-4. Compared to other chronic illness populations, (i.e. HIV and sickle cell) caregivers of children undergoing evaluation for both solid organ and bone marrow transplant reported greater symptoms of PTS5.  Experiencing a solid organ transplant in childhood can often lead to unresolved trauma and questions for patients and caregivers6.  In response to this need, the transplant social workers created and executed a formal process for families to view the explanted organs.
Method: Partnering with surgical pathology, social workers created a comprehensive protocol to reserve the explant, schedule and host a virtual viewing, complete photo consents and EMR documentation and process the experience with patients and caregivers. Social workers engaged and worked closely with hospital stakeholders including Transplant MDs, Surgical Pathology, Marketing, Family Centered Care and EPIC EMR with the help from Stanford’s Value Improvement Program. REDCap surveys were created and sent via email and SMS text message to caregivers and pathologists.  Surveys were provided to caregivers in both English and Spanish.
Results: Out of 40 patients, 36 organs were viewed from Oct 2020 to Aug 2021.  Post viewing surveys revealed high satisfaction rates with 94% of participants indicating their overall experience was “Extremely Positive” and would “Definitely Recommend” participation to other families. Other feedback stated the viewing “brought us closure”, “was truly cathartic for me”, “was a clear way to understand how sick the organ was” and “reaffirmed we made all the right choices.” Pathologists reported 100% “extremely positive experience” and 100% would “definitely recommend” other pathologists to participate in organ viewing teachings.  Pathologists reported “it is one of the most fulfilling parts of my job”, “it seemed to help the family to ask questions about the biology of the patient’s disease process” and “it was enriching to explain this as a pathologist.”
Conclusions: Patients and caregivers who viewed their explanted organs experienced high levels of satisfaction with the organ viewing program and endorsed validation of their decision to pursue transplant. Surgical Pathologists found the program beneficial and enriching to their primary role.


[1] Mintzer LL, Stuber ML, Seacord D, Castaneda M, Mesrkhani V, Glover D. Traumatic Stress Symptoms in Adolescent Organ Transplant Recipients. Pediatrics. 2005;115(6):1640-1644.
[2] 1. Young, G. S., Mintzer, L. L., Seacord, D., Castaneda, M., Mesrkhani, V., & Stuber, M. L. (2003). Symptoms of posttraumatic stress disorder in parents of transplant recipients: incidence, severity, and related factors. Pediatrics, 111(6), e725-e731.
[3] Cousino M, Rea K, Schumacher K, Magee J, Fredericks E. A systematic review of parent and family functioning in pediatric solid organ transplant populations. Pediatric Transplant. 2017;21(3):e12900.
[4] Farley LM, DeMaso DR, D’Angelo E et al. Parenting Stress and Parental Post-traumatic Stress Disorder in Families After Pediatric Heart Transplantation. The Journal of Heart and Lung Transplantation. 2007;26(2):120-126.
[5] Ingerski LM, Shaw K, Gray WN, Janicke DM. A Pilot Study Comparing Traumatic Stress Symptoms by Child and Parent Report Across Pediatric Chronic Illness Groups. Journal of Developmental & Behavioral Pediatrics. 2010;31(9):713-719.
[6] Steele RG, Aylward BS, Jensen CD, Wu YP. Parent- and Youth-Reported Illness Uncertainty: Associations With Distress and Psychosocial Functioning Among Recipients of Liver and Kidney Transplantations. Children's Health Care. 2009;38(3):185-199.

Presentations by Denise M Alloway