Quality of life in school-age children following liver transplantation

A descriptive exploratory study was conducted to ascertain the quality of life in school-age children 3 to 6 years following liver transplantation for chronic liver disease. Thirty children were to be included, however only 25 were recruited, and 20 of the 25 children became the study sample. The 20 school-age children ranged in age from 5 years 4 months to 11 years 9 months. The setting for the study was a conference room adjoining a social work office in a 220-bed university-affiliated children's hospital located in a large city in the Northeastern United States. The data were collected through the use of individual interviews, which were audiotaped and transcribed, and the written completion of an 80-item, self-report inventory. Interviews ranged in length from 1 hour 15 minutes to 1 hour 45 minutes. They were scheduled at a time that was convenient to the children's yearly pediatrician follow-up examination. Since the children and their families lived in other states and countries a great distance from the hospital, all communication with the families and scheduling of appointments were coordinated by the secretary of the pediatrician. The children in this study experienced liver transplantation 3 to 6 years prior to the interview for biliary atresia (n = 15), alpha 1-antitrypsin deficiency (n = 3), tyrosinemia (n = 1), and neonatal hepatitis (n = 1). Eighty-five percent of the children (n = 17) experienced liver transplantation before the age of 6 years, and 15 percent of the children (n = 3) experienced transplantation after 6 years of age. Responses from the modified Pigem's test, a projective test of children's values and attributes about self, and from the Zamberlan Questionnaire were content analyzed, then categorized according to the specific areas representative of the children's evaluation of the quality of life. Interrater reliability of the categories demonstrated 87% agreement of the coded items on the interview data. Five categories were derived from analysis of the interview and Pigem's data and included: (a) psychosocial adjustment at school and relationships with peers and family members; (b) internalization of the donor organ, the knowledge of the liver transplant experience, and thoughts about the donor person; (c) changes in physical appearance and physical functioning; (d) emotions, fears, or concerns about rejection and future outcome of the liver transplant(s); and (e) children's satisfaction with present and future life, and thoughts about self as reflected on the Pigem's test.(ABSTRACT TRUNCATED AT 400 WORDS)