0113

PROBLEMS OF CHILDREN WITH BRAIN OR SPINAL CORD TUMORS AND THEIR SIBLINGS

Freeman K, O��Dell C, Meola C.

Montefiore Medical Center, New York, U.S.A.

Objective: Identify at each phase of illness the most prevalent problem of children with brain or spinal cord tumors and siblings

Methods: Regional survey addressing topics concerning interaction with healthcare providers, medical information and education, healthcare delivery/utilization, and psychosocial topics.

Results: A total of 47 siblings responded to the diagnosis phase. The most prevalent problem at diagnosis was ��The way the doctor told me how things might turn out,�� at hospitalization was ��Information about how things might turn out,�� at hospital discharge was ��Information about what might have caused the tumor,�� at adjuvant treatment was ��Help in handling changes in how my brother/sister looked,�� at the terminal phase was ��Information I received about dying�� and ��Treatment of my brother/sister��s pain.��

A total of 26 affected children responded to the diagnosis phase. The most prevalent problem at diagnosis was ��The was the doctor told me what was wrong,�� at hospitalization was ��Help with keeping up with my school work,�� at hospital discharge was ��Help in dealing with changes in my physical activities,�� at adjuvant treatment was ��Help in dealing with my moods�� and ��Help in dealing with changes in how I looked,�� and during remission was ��Help in dealing with changes in my physical activities�� and ��Information I received about possible effects on future relationships.��

Conclusions: Problems differed across phases of illness.