Outcomes/Effectiveness Research

Families of liver transplant recipients age 5 and older have higher stress levels than either families of younger liver transplant recipients or a control group

Children receive 12-15 percent of all liver transplants in the United States. With 10-year survival rates approaching 80 percent, the expectation is that these children will lead healthy lives, performing everyday activities free from the burden of chronic illness. Analysis of health-related quality of life (HRQOL) in these patients is an initial step in determining if these expectations are being fulfilled.

The first HRQOL study of children with liver transplants that also examined family function was conducted by a team of researchers led by Estella M. Alonso, M.D., of Children's Memorial Hospital in Chicago. They found that family function in the families of older (age 5 and up) and younger (2-5 years of age) liver transplant recipients appeared normal but that the families of the older recipients reported higher levels of stress. Older children had lower scores than a normative sample of children in physical health, general health, parental emotional impact, and disruption of family activities. Younger children scored lower in global health and general health perceptions, but did not differ from controls in physical and psychosocial outcomes.

The researchers performed a multi-center study of 102 children who had survived at least 2 years following transplant surgery. They collected HRQOL data using either the Infant Toddler Quality of Life Instrument (for patients under 5 years of age) or the Child Health Questionnaire Parent Form 50. The Family Assessment Device (FAD), a survey directed to multiple members of the same family, was administered to families of both older and younger recipients.

Family dynamics is an important aspect of functional outcome for children that has not been directly investigated in earlier studies of post-transplant outcomes. Demographic, but not clinical, variables were significant predictors of HRQOL. For example, children from minority racial groups and those with parents of lower educational status had lower reported HRQOL. Only one post-transplant medical factor, biliary complications, affected family function. This was not considered surprising, since treatment of this condition requires ongoing invasive procedures and is associated with bacterial infection.

The researchers speculated that the higher levels of stress experienced by the families of older recipients may be related to patients 5 to 7 years of age having the highest level of dysfunction in the roles scale. This scale measures the family's ability to handle family tasks, including health-related functions. Such tasks may become more of a challenge to the family as the child enters formal education at this age. This research was supported by the Agency for Healthcare Research and Quality (HS13270).

See "Health-related quality of life and family function following pediatric liver transplantation," by Dr. Alonso, Katie Neighbors, Franca B. Barton, and others in Liver Transplantation 14(4), pp. 460-468, 2008.

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