Trial Information

Development and Validation of a Symptoms Scale for Children With Chronic Graft-Versus-Host Disease

A large number of children with cGVHD have to deal with many years of a disfiguring and
painful chronic illness with the side effects of long term steroid use. The number of stem
cell transplants done in children is only growing given that we are now transplanting
patients with a variety of nonmalignant disorders and given the use of alternative donor
sources. The broad categories of limited and extensive cGVHD are recognized by clinicans,
but are not particularly useful in clinical practice. Since cGVHD may involve almost every
organ system adn since cGVHD constitutes a waxing and waning nature, cGVHD makes clinical
management very difficult and complicated. Currently, there is a symptoms scale used in the
adult population for measuring symptom burden for adults with cGVHD. This scale is called
the "Lee Symptoms Scale". The purpose of this project is to develop a scale that is similar
in design to the Lee Scale, but it is specifically designed to measure the burden of cGVHD
in the pediatric population