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.