EPID-11. ESTABLISHING A BASELINE TIME-FRAME FOR SYMPTOM ONSET TO DEFINITIVE DIAGNOSIS FOR CHILDREN WITH NEWLY-DIAGNOSED CNS TUMORS: AN EXPANDED, MULTI-INSTITUTIONAL COLLABORATIVE STUDY

Abstract

BACKGROUNDWe have previously documented the presence of diagnostic delays in children with central nervous system (CNS) tumors in the United States. This study serves to expand and validate the previously established baseline from symptom onset to definitive diagnosis in children with newly-diagnosed CNS tumors. DESIGN: The medical records of children with newly-diagnosed CNS tumors were retrospectively reviewed from January 2004 to December 2017 at Nationwide Children’s Hospital, Akron Children’s Hospital and Riley Hospital for Children at IU Health. Records were reviewed for age, gender, tumor type, presenting symptoms, number of healthcare visits prior to diagnosis, time interval (in months) from onset of symptoms to definitive diagnosis and any associated genetic syndromes.RESULTSOf the 768 patients with newly-diagnosed CNS tumors, the median time interval from symptom onset to definitive diagnosis was 40.5 days while the mean symptom interval was 144 days (range < 1 to 5,475 days). The median age of diagnosis was 7 years, with a male predominance (57%). This expanded cohort continues to reveal that pediatric brain tumor patients most often seek care at the primary care level, although many patients were seen in various multiple subspecialty clinics prior to diagnosis.CONCLUSIONSThis multi-institutional cohort study updates our previously documented single state time interval and provides a consistent Midwest “benchmark” to improve awareness for children with brain tumors through the adaptation of the UK ‘HeadSmart,’ now renamed ‘BrainFirst.’ Additionally, future work could include a prospective registry to better examine potential risk factors for delays in diagnosis.