Background: Many survivors of pediatric brain tumors (SPBTs) suffer from long-term late effects (LEs). Our aim was to create a practical screening tool for detecting LEs in this population. Such a screening tool will improve our ability to identify those patients who may benefit from treatment in LE clinics while focusing on individual relevant issues.
Procedure: We developed the Treatment-Oriented Screening Questionnaire (TOSQ); a self-reported, risk-based questionnaire that addresses all LEs SPBTs can potentially suffer. As a basis for the TOSQ design we used the Long-Term Follow-Up Guidelines published by the Children's Oncology Group. Output includes individual recommendations for further treatment. We prospectively assessed whether the TOSQ can accurately detect treatment targets in SPBTs by comparing patient and caregiver questionnaire scores with physician evaluations. Data are presented from 41 SPBTs.
Results: The TOSQ is a precise screening tool for identifying LEs in SPBTs based on the significant correlation (P < 0.05) that was found between parental scores and physician evaluations. Statistical testing proved that parents are a good source of information about child's health status, and that TOSQ accurately reflects the correlation between patient difficulties and quality of life.
Conclusions: The TOSQ is the first described screening tool for identification of LEs designed specifically for SPBTs. It is simple to use and provides a valid, comprehensive and economic assessment followed by targeted treatment plan for each patient. By repeatedly using the TOSQ over the years, we can improve our ability to detect and give focused treatment to those who require assistance.
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