Background: Although survival has increased significantly for pediatric ITx recipients, continued graft surveillance and monitoring of clinical and psychosocial outcomes are essential. Purpose: Describe clinical outcomes, care needs and adherence of long-term ITx survivors. Method: 12-month retrospective chart review. Demos: 273 ITx performed in 247 recipients. 86 patients > 10 yrs post-ITx; 57 alive with functioning graft eligible for inclusion. Mean age at assessment: 18.2 yrs (11.02-30.04); mean time since ITx: 14.7 yrs (10.13-26.87); 68.4% male; liver graft included in 82.4%. Indications for ITx: congenital (33.3%), volvulus (31.6%), motility disorders (17.5%). Results: During the study period, there were no incidences of ACR, but 73.7% had <1 episode of mild/moderate ACR historically. TAC monotherapy in 59.6%; mean level 5.34 ng/ml. No active CMV or EBV infections. URIs/influenza most commonly cited infections (30%). Stoma closure achieved in 75.4% with 36.8% requiring antimotility agents. Enteral autonomy achieved in 80.7%. Mean albumin 3.65 g/dL; mean creatinine 0.85 mg/dl (0.3-2.36). Care needs: Labs < monthly (35%), q2-3 mos (30%); annual clinic visits (52.6%), annual graft surveillance (78.9%). Medications: mean number of meds=9.4 (3-31); IS, PCP prophylaxis, antacids, antimotility meds most common. Mean Karnofsky/Lansky score 83.4 showing normal activity with some effort and some signs of disease. 64% of families self-report as intact with good to strong support systems. School performance: 28.6% reported doing “well;” 26.8% with some difficulty, 17.5% have IEPs, 15.8% in counseling/therapy, 10.5% in OT/PT/Speech therapies. Overall adherence rate to recommended surveillance was 40.4%. Nonadherence rates: clinic 50.9%, labs 40.4%, endoscopies 33.3%, medications 31.6%. Common themes emerged within chart review about behavior, ADHD, developmental delay, school problems, mental health, anxiety, depression, oral aversion, adherence, insurance, finances. Conclusions: Long term ITx survivors are relatively healthy with stable graft function; however, concerns for adherence, mental health, developmental delay, and school performance continue into the long term. Providing a mechanism for ongoing education, care, and support, and the early initiation of a transition program may help the pediatric ITx recipient attain an optimal outcome.

CITATION INFORMATION: Kosmach-Park B., Mazariegos G. Clinical Outcomes, Care Needs and Adherence in Long Term Intestine Transplant Survivors ≥10 yrs Am J Transplant. 2017;17 (suppl 3).

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