*Purpose: For children with liver transplants (LT), achieving an “ideal outcome” is a balancing act: too little immunosuppression (IS) begets graft injury; too much IS begets systemic toxicities. Our aim was to delineate the patient/family perspective on this critical tightrope.

*Methods: A brief, 13 question survey (English) was sent to parents/guardians of children who had LT at <18yo via patient advocacy group listservs (Society of Pediatric Liver Transplant, Starzl Network for Excellence in Pediatric Transplant) and social media (Facebook, Twitter). Caregivers were asked to prioritize their top concerns; rate their level of concern/level of certainty about IS complications and rejection from 1 (not concerned or completely uncertain) to 10 (extremely concerned or absolutely certain).

*Results: 76 caregivers responded. Children had LT at 0-2y (77%), 3-11y (16%), 12-18y (7%). At survey, median recipient age was 4y (IQR 2-9y; range 0-22y); 73% were currently receiving IS monotherapy. Caregivers’ top concerns about IS were related to IS toxicity and infection risk (FIG). 46% were more concerned about IS complications than rejection, vs only 17% more concerned about rejection than IS toxicity; 37% were equally concerned. Among caregivers of children receiving IS monotherapy, more worried about IS toxicity than rejection, 48% expressed equal concern for both. Caregiver’s level of concern about rejection was higher for children on more than 1 (28%) vs 1 IS agent (72%): median (IQR) scores of 85 (61-100) vs 70 (47-90); p=0.07. Time since LT (0-4yrs vs >4yrs) was not associated with concern level for rejection or IS complications. Caregivers were significantly more certain that their child’s IS regimen was correct to prevent rejection than mitigate IS toxicity: scores of 90 (70-100) vs 65 (40-87); p<0.005. Neither time since LT nor number of IS medications were associated with caregivers’ certainty levels.

*Conclusions: Caregivers of children with LTs are more concerned that IS risks toxicity than rejection. In parallel, they are more certain that IS dosing is appropriate to prevent rejection than to avoid toxicity. In the integrated, patient-centered model of active patients/caregivers and receptive clinicians, understanding the caregiver perspective in long-term IS management is critical and can help guide management toward ideal outcomes, as caregiver priorities and concerns may differ from their providers.

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