Abstract
BACKGROUND: The period between adolescence and adulthood is important and complicated for all people. Is much more complicated for young adults (YA) that were diagnosed and treated for central nervous system (CNS) tumors in childhood and adolescence. They have to continue a lifelong multidisciplinary surveillance that is time and energy consuming. Patients that does not have any or significant neurological deficit desire to start a ”normal” to age life that includes independence from the parents and reduction of hours spent in the hospital. They try to undergo surveillance in community health services but that way is complicated and the surveillance is made irregularly or not at all. If they undergo surveillance in hospitals where it is regularly made, the patients lose school or work days and suffer from high anxiety level because of the “to be a patient again ” feeling . Attempts to create the optimal surveillance model for those patients were made, but the best model is still unknown. MATERIAL AND METHODS: We questioned CNS tumor patients 20-40 years old that were transferred from a pediatric to an adult neuro-oncology service in Sheba MC. RESULTS: The response from 38 patients was obtained: 11 patients with pilocytic astrocytomas, 11 other gliomas, 3 gangliogliomas, 2 germ cell tumors, 3 medulloblastomas, 3 NF1 patients with optic pathway gliomas, 4 with pineal region tumors, 1 with immature teratoma. 33% of patients are married and live with the spouse, 55% live with their parents, 4 % live by themselves. Of the respondents 18 % are students and 47% are permanently employed. Most of the patients prefer to undergo surveillances in community health services and visit hospitals as rare as possible. All patients expressed an understanding of the importance of a lifelong surveillance as recommend by the treating neuro-oncologist. The patients strongly expressed the need to have a dedicated case coordinator that can help organize the test’s flexible timetable and an effective communication between the teams CONCLUSION: According to our patient’s opinion, the preferable model of surveillance for high functioning YA CNS tumor patients is the cooperation of the hospital’s neuro-oncology unit and the community health service. The first is responsible for planning the surveillance and taking the appropriate medical actions according to the RESULTS: . The second is responsible for the realization of the program. The assignment of a case coordinator that connects between all of the teams is crucial.