Development and validation of a disease-specific health-related quality of life questionnaire for children after liver transplantation

Ten to 15% of all liver transplants performed worldwide occur in children under the age of 18 years, and are the treatment of choice for children with end-stage liver disease. The process of eliciting from children, adolescents and their parents the sequelae of physical, emotional and social concerns will constitute the first attempt of significant magnitude to systematically explore the overall well-being of children who have survived liver transplantation. The development, cross-cultural adaptation (Canadian English, French and First Nations; together with Australia, Ireland and Scotland) and validation of a disease-specific measure to assess pediatric liver transplant-related quality of life will facilitate greater appreciation of the psychosocial impact of this life-saving procedure in day-to-day living. Accurate measurement of health-related quality of life will allow health care providers to assess varying responses to illness and represent the patients¿ perspective on the risks and benefits of interventions. Without these data, it is difficult to inform patients, families, and providers about clinical and functional tradeoffs and to most effectively involve patients and families in decision-making.