Parents of pediatric liver transplant recipients report lower health-related quality of life for their children two years after the surgery, compared to reports from the parents of healthy children. However, reports of family dysfunction fall within the normal range. Children account for up to 15 percent of liver transplant recipients each year in the U.S. Their 10-year survival rate is nearly 80 percent, however, survival is not the only outcome of interest. Liver transplantation has long-term implications for a child’s health related quality of life (HRQOL), which includes physical health, mental health, social functioning, role functioning and general health perceptions.
Previous studies have attempted to measure the HRQOL of pediatric liver transplant recipients, but have been limited to single centers and have yielded mixed results. Researchers from the Studies of Pediatric Liver Transplantation (SPLIT) consortium, led by Estella Alonso of Children’s Memorial Hospital in Chicago, decided to conduct a multi-center analysis of HRQOL and family function for these young patients.
They included 102 pediatric liver transplant recipients from five centers in the United States. Sixty-seven were under 5 years old, while 35 were between 5 and 18 years of age. At about 2 years post transplant, the researchers asked the children’s parents to complete a questionnaire about their child’s quality of life, along with the Family Assessment Devise (FAD), assessing family function. They then compared the data to either a control population or a published healthy normative population.
On measures of HRQOL, the younger transplant recipients scored significantly lower in global health, general health perceptions and change in health, compared to the children in the control group. The older children scored significantly lower in physical health, general health, parental emotional impact, and disruption of family activities.
Interestingly, however, the mean scores of the FAD scales indicated no increase in family dysfunction. Twenty-five percent of the transplant families were within the unhealthy range, compared to 19 to 36 percent of non-clinical families reported in FAD validation studies.
“Future assessments of HRQOL in this population should include the perspective of the patient and both of their parents to yield the fullest understanding of their health status and adjustment to post-transplant medical care,” the authors conclude.
Journal reference: “Health related quality of life and family function following pediatric liver transplantation.” Alonso, Estella M.; Neighbors, Katie; Barton, Franca; McDiarmid, Sue; Dunn, Stephen P.; Mazariegos, George; Landgraf, Jeanne; Bucuvalas, John; SPLIT Research Group. Liver Transplantation; April 2008.
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