小児肝移植患者の青年期のQOLに関する実態調査

抄録

【Objective】 The aim of the present study was to evaluate actual state of quality of life and validate the support needed during adolescence among pediatric liver transplant recipients.

【Methods】 During the study period, 99 liver transplant recipients in the National Center for Child Health and Development were enrolled and participated in a questionnaire survey, including research into school and work status, interaction among recipients, surgical wounds, and adherence to medication.

【Results】 Responses from 73 among the 99 recipients and their parents were obtained. In school life in junior high school and above, the effects of tardiness, early leaving, and absence from school due to hospital visits and hospitalization, and communication issues with the school were indicated. Sixty percent of the junior and senior high school students were concerned about "surgical wounds" and "physical condition," suggesting the need for consideration of surgical wounds and presentation of treatment options regardless of gender. The results also suggested that there was an association between non adherence to medication, and worsening liver function. Regarding the support needed before and after transplantation and future concerns of pediatric liver transplant recipients as adolescents, "physical condition" accounted for the largest proportion, followed by "love, marriage, and childbirth" and "employment".

【Conclusion】 Medication adherence in adolescents after pediatric liver transplantation was indicated by changes in life background in adulthood, understanding of the importance of medication management, and the burden of medical costs. It is an important issue for the future to enhance mental support that takes into consideration the characteristics of adolescents and young adults, in addition to support that accompanies anxiety and daily concerns before surgery.