With the generous support of the 1998 Elizabeth Azzara Research Grant from C.L.A.S.S., we developed two questionnaires, one for parents and one for children over eight years of age, to measure the quality of life of children and adolescents after liver transplantation. We then used this questionnaire, the Pediatric Liver Transplant Specific Scale (PLTSS) to assess the quality of life of those youth between 6 and 18 years of age, cared for in the UCSF liver transplant program.

We defined quality of life as the subjective appraisal of one’s life and of pertinent life dimensions, including physical, emotional, and social well being, as well as role performance and environmental adequacy. Given the subjective nature of this area, we sought to develop these questionnaires directly from the perspectives of the children with liver transplants and their parents. To do this, we conducted focused discussion groups with adolescents with transplants and their parents. The ideas generated in the focus groups provided the basis for the items in the PLTSS.

There was consensus between parents and youth participating in the focus groups in some areas but considerable divergence as well. Both parents and youth expressed concern about the youth’s participation in school and extracurricular events, about developing peer relationships, about the youth feeling ostracized and excluded, and about the side effects of medications. Transplant recipients endorsed the emotional burden of the transplant, including anxiety over laboratory results, anger about having to have a transplant, and fear of graft rejection. Parents focused on emotional developmental issues — becoming independent and building self-esteem, and on normalizing social interactions. After initial analysis, the PLTSS consisted of 27 items with seven sub-scales, including Invulnerability, Peer Relations, Peace of Mind, Positive Outlook, Empathic Attention, and Medication Issues.

We combined the PLTSS with generic quality of life questionnaires to broadly and comprehensively assess the quality of life of children with liver transplants. This ‘battery’ approach allowed comparison of these youth, and children without transplants, as well as more in-depth examination of the impact of liver transplantation. Questionnaire packets were completed by 48 (84% response rate) of the parents asked and 34 (87% response rate) of the children asked.

We also administered the PLTSS to a comparison group of 58 pairs of children and parents.

On the PLTSS, parents of children with liver transplants generally rated their children’s quality of life as no different than that of children without transplants. Parents in the liver transplant group did report that, relative to the comparison group, their children felt more vulnerable and had missed out on more social events. On the other hand, children with liver transplants rated their overall quality of life as good, but worse than the comparison group. Children with liver transplants described themselves as more vulnerable and less hopeful than the comparison group. Youth with transplants also felt less positive about the sensitivity of adults in their lives than did the comparison youth.

Other measures used in the battery of questionnaires provided a more complex picture. On one generic measure of life satisfaction, youth with liver transplants generally reported high levels of satisfaction though less satisfaction with themselves and with their friends than the control group. On the other hand, parents rated their children with liver transplants as having greater emotional and behavioral strengths than a national comparison group.

In the final analysis, parent and child reports provided a different picture of the relative quality of life of children with liver transplants. The difference between parent and child scores could reflect parental hopefulness, a projection of parental concern for their children, the loneliness of these youth, and the youth’s inability to share all of their emotional concerns with their parents. On a more fundamental level, these differences suggested the need to obtain information from both parents and youth.

This initial investigation provides evidence of the importance of assessing the quality of life (QOL) of children following liver transplantation and the need for further research in this area. The study also provided initial support for further use of the PLTSS to assess youth following liver transplantation. The prominent themes uncovered in this study — fear of graft rejection, the impact of immuno-suppression, and the empathic attention of adults – suggest that some of these youth could benefit from formal psycho-social assessment and interventions.

The purpose of this study was the development of an instrument to assess the QOL of children following liver transplant. QOL is a broad index of outcome that challenges the clinician to look beyond the more traditional but limited outcome measures of morbidity and functional status. For the pediatric hepatologist and the families they treat, a better understanding of the correlates of QOL for children after liver transplant may result in the development of medical interventions with fewer side effects and more attention to family support and education to limit anxiety and fear.