Clinical and psychosocial outcomes of long-term survivors (< 5 years) following pediatric intestine transplantation
Beverly Kosmach-Park1, Rakesh Sindhi1, Mary Ehmann3, Leslie Hoffman2, Patricia Tuite2, George Mazariegos1
1Transplant Surgery, Children's Hospital of Pittsburgh, Pittsburgh, PA, United States; 2School of Nursing, University of Pittsburgh, Pittsburgh, PA, United States; 3Pearson, NY, NY, United States
Background: Although short term survival following intestine transplantation (ITx) is excellent, achieving long term survival has been challenging. This study explores the relationship between long term clinical outcomes and psychosocial functioning in pediatric ITx recipients.
Aim: Describe the long term clinical status and psychosocial outcomes of pediatric patients at > 5 years post-ITx and the relationships of those outcomes.
Method: Clinical outcomes were analyzed through chart and database review. Parent and child forms of the Child Health Questionnaire (CHQ)  and the SF-36v2  were used to assess psychosocial outcomes. Analysis included descriptive statistics, Pearson/Spearman correlation coefficients, and Chi-square testing.
Results: 68 of 74 patients surviving at > 5 yrs post-ITx met eligibility requirements with 60% recruitment (n=41). Gender: 58% male; indication for ITx: congenital = 37%, volvulus =34%, motility disorders = 12%; mean age (SD) = 15 yrs (5.8); time since ITx = 10.4 yrs (4.0); type of ITx: with liver = 73%. Immunosuppression: induction therapy with anti-thymocyte globulin = 63%; mean TAC level = 5.46 ng/ml; steroid-free= 58%. Rejection (ACR): Incidence = 90.2%, severe ACR = 22%. Treatment of ACR: steroid bolus/recycle = 70.9%. CMV disease = 22% (n=9); PTLD = 12% (n=5). Nutrition: regular PO diet = 90% (n=37); mean (SD) albumin = 3.65 g/dl (0.44); mean Z score for height for age = -1.0783, weight for age = -.7663. Stoma closure achieved in 80%; anti-motility agents required in 29.3% (n=12). Renal function: mean (SD) creatinine = 0.79 mg/dl (0.34), BUN = 16.66 mg/dl (6.95), GFR = 78.61 (35.73), renal tx = 9.8% (n=4). Psychosocial functioning per CHQ parent report revealed significantly lower mean scores in family activities (p<0.04), emotional impact on the patient (p<0.002), general health perceptions (p<0.001). CHQ child report disclosed a poorer perception of global health (p<0.003), greater behavior problems (p<0.0007), but less reported pain (p<0.03). SF-36v2 for patients > 18 yrs: decreased physical role (p<0.01), greater vitality (p<0.02). Per child report, ITx recipients with 2 or more episodes of ACR had significantly lower scores in global behavior (p< .044) and limitations related to behavior (p< .03), but ACR did not significantly affect psychosocial functioning per parent report. PTLD was related to significantly lower scores in physical functioning (p<.003) and changes in health (p<.04) per child report and limitations related to behavior (p<.03) and global behavior (p<.04) per parent report. Parents of children who developed CMV reported significantly lower scores in changes in health (p<.04), but there was no effect from the child’s perspective.
Conclusions: Long term survivors of ITx are general healthy children and young adults at 5 or more yrs post-ITx. They are maintained on low levels of immunosuppression, are steroid-free, and have nutritional autonomy; however, a majority has diminished growth velocity; renal impairment requiring transplantation has occurred. Children generally report their psychosocial functioning as similar to the norm; however, perceptions of their behavior and global health are less favorable. Caregivers report significantly less favorable assessments related to general health, disruption of family activities and the emotional impact of the child’s health.