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Abstract: PO2343

Caregiver Perspectives of Pre-Transplant Evaluation for Children

Session Information

Category: Pediatric Nephrology

  • 1700 Pediatric Nephrology


  • Salmon, Eloise, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States
  • Barr, Laura, University of Pennsylvania, Philadelphia, Pennsylvania, United States
  • Hill, Douglas, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States
  • Amaral, Sandra, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States

Pre-transplant evaluation is mandated by Centers for Medicare and Medicaid Services, but there is institutional variation in implementation. The family experience of this process also is incompletely understood. Current literature largely focuses on adult transplant recipients. Our interview study aims to fill the knowledge gap about family experience of the evaluation for children.


Interviews took place 07/2019 - 02/2020 with caregivers of children referred for kidney transplant at our center 07/2017 - 12/2018. The interview guide included closed- and open-ended questions; responses were audio-recorded and then transcribed for coding of themes. Respondents also completed a brief electronic questionnaire.


Our team interviewed caregivers of 19 children; demographics in Fig. 1. Prominent themes included (1) the pre-transplant evaluation is overwhelming and emotional, (2) prior experiences and background knowledge are influential and (3) frustration with communication among teams was common. Fig. 2 highlights representative quotations from caregivers.


These findings are relevant to efforts by nephrologists to optimize delivery of information about transplant and other complex topics. The data highlight the importance of (1) acknowledging the scope of content and continually reevaluating accessibility of delivery (2) recognizing the influence of prior experiences and tailoring elements accordingly for increased family-centeredness and (3) making concerted efforts to define roles and set expectations, especially when multiple teams are involved in care.

Fig. 1

Fig. 2


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