Study of the health, participation, and quality of life of Lithuanian children with spina bifida

Spina bifida is the most complex congenital disability compatible with life. Nowadays, up to 90-95% of children born with spina bifida are surviving to adolescence because of advances in the management of Chiari II malformation, hydrocephalus, infections and neurogenic bladder dysfunction. With an increasing survival and life expectancy of these children, the emphasis has been placed on understanding pathways to measure and enhance their participation and quality of life. In this dissertation, the health, participation and health-related quality of life of Lithuanian children with spina bifida are analyzed according to the International Classification of Functioning, Disability and Health. The broad range of health and functional issues, as well as the methods used to manage them in Lithuania, are identified and discussed. An innovative, comprehensive, and psychometrically robust participation outcome measure used in the study created possibilities to explore various aspects of participation and the environment in different settings. Clinical and environmental predictors of participation and the health-related quality of life are assessed in the study, areas for change and improvement are identified, and detailed clinical practice guidelines for promoting the participation and health-related quality of life of Lithuanian children born with spina bifida are provided