Glioblastoma (GBM) represents 80% of all primary
malignant brain tumours in adults. Prognosis is poor,
and there is a clear correlation between disease progression
and deterioration in functional status. In this pilot study we
assess whether we can estimate disease progression and
progression free survival (PFS) from routinely collected
electronic healthcare data. We identified fifty patients with
glioblastoma who had chemo-radiotherapy. For each patient
we manually collected a reference data set recording demographics,
surgery, radiotherapy, chemotherapy, follow-up and
death. We also obtained an electronic routine data set for each
patient by combining local data on chemotherapy/radiotherapy
and hospital admissions. We calculated overall survival
(OS) and PFS using the reference data set, and estimated
them using the routine data sets using two different methods,
and compared the estimated measures with the reference
measures. Overall survival was 68% at 1 year and median
OS was 12.8 months. The routine data correctly identified
progressive disease in 37 of 40 patients and stable disease in 7 of 10 patients. PFS was 7.4 months and the estimated PFS
using routine data was 9.1 and 7.8 months with methods 1
and 2 respectively. There was acceptable agreement between
reference and routine data in 49 of 50 patients for OS and 35
of 50 patients for PFS. The event of progression, subsequent
treatment and OS are well estimated using our approach, but
PFS estimation is less accurate. Our approach could refine
our understanding of the disease course and allow us to report
PFS, OS and treatment nationally.