P1.20: Quality of life in children after intestinal transplantation: comparison with liver transplantation and home parenteral nutrition

Abstract

Introduction: Home parenteral nutrition (HPN) and intestinal transplantation (ITx) are efficient techniques of the management of intestinal failure (IF).We realised that duration of life may not always equate to child and parents’ health related quality of life (HRQOL).The aims of this study are to evaluate the HRQOL in children after ITx with a validated questionnaire, and to compare this population to patients after liver transplantation (LTx), and to patients withIF on long term HPN. Methods: It is an on-going prospective study including patients between 10 and 18 years old, receiving ITx at Necker-Enfants Malades Hospital, with at least 2 years graft survival. We compared them to patients who underwent LTx or receiving HPN, paired on age, delay from transplantation, diagnosis for children on HPN. We used the Child Health Questionnaire, child report form (CHQ-CF87) and parent report form (CHQ-PF 50), including 13 HRQOL domains: physical functioning, social emotional status, social behavioral status, social physical status, bodily pain, general behavior, mental health, self-esteem, general health perceptions, parental impact, family activities and family cohesion. Mean values for each item will be calculated and converted to percentages. Two-tailed Student t-test will be used to compare the mean scores of subjects. Results: We enrolled 48 children: 16 after ITx (mean age 14.9 ± 2.7), 16 after LTx (mean age 14 ± 2.9) and 16 on long term HPN (mean age 13.8 ± 3.7). The study just started, with a good participation and feedback from patients and parents. 12 patients and 20 parents already answered. We already observed that in the same subcategory patients and parents scores often differed. Conclusion: We expect to gain important information about the HRQOL of children after ITx compared to other chronic diseases, to improve the early and long term psychological care of these patients. We hope that better understanding of the impact of these procedures on the child as well as the family’s QOL will assist them in the care.