Purpose/Objective(s): The purpose of this study is to investigate health-related quality of life (HRQOL) in survivors of intracranial germ cell tumors (IGCT). We hypothesize that HRQOL is lower for IGCT survivors compared to the general population.

Materials/Methods: Survivors of IGCT were invited to attend the clinic and were asked to complete the 36-Item Short Form Survey Instrument (SF-36). The SF-36 is scored from 0-100, with a higher number representing a more favorable HRQOL. SF-36 scores of the study cohort were compared with that of the general population.

Results: The study cohort consisted of 12 survivors of IGCT, 6 males and 6 females. Median age was 13 years at diagnosis (range, 10-18), and 26 years at time of study (range, 7-34). Median follow-up was 11 years. Five patients had germinomas, and 7 had non-germinomatous germ cell tumors. All 12 patients received radiation therapy (RT), 10 to the craniospinal axis, 1 to the whole ventricles and 1 to the tumor bed alone. Nine patients received chemotherapy. Mean SF-36 scores and Canadian normative data are shown in the below table.

SF-36	Mean scores (standard deviation [SD])
	Study Cohort	Canadian normative data
Physical functioning	67.9 (33.2)	83.5 (21.2)
Role limitations due to physical health	58.3 (37.4)	78.7 (35.5)
Bodily pain	74.2 (33.4)	73.3 (23.3)
General health	57.1 (24.0)	76.4 (17.7)
Vitality	43.1 (18.4)	62.9 (18.4)
Social functioning	62.5 (32.0)	84.3 (20.7)
Role limitations due to emotional problems	77.8 (32.8)	81.2 (33.7)
Mental health	74.3 (15.3)	76.1 (15.7)

Mean scores were ≥1 SD lower than that of Canadian normative data for vitality, general health, and social functioning. Physical component summary score was 43.6 (SD 13.9) and mental component summary score was 47.6 (SD 11.2), normalized to a United States’ population with mean scores of 50 and SDs of 10.

Conclusion: Long-term HRQOL for survivors of IGCT is lower than that of the overall population, particularly in vitality, general health, and social functioning. Physical and psychosocial supports should be considered for IGCT survivors. Larger studies would be worthwhile to determine factors associated with HRQOL, which may improve treatment decision-making and informed consent for patients and families affected by IGCT.