‘Routes from Diagnosis’ links and analyses routinely-collected cancer registry and HES data to map the cancer journey for cohorts of patients over up to 7 years after diagnosis. This approach brings together information on survival, morbidities and demographics, painting a detailed picture of survivorship.
We aimed to investigate the heterogeneity of survivorship outcomes within the brain and central nervous system grouping of tumour types, including the prevalence of ‘meaningful’ morbidities treated in inpatient care.
Clinical experts and data analysts collaborated to map cancer journeys for 8,762 patients diagnosed with brain/CNS tumours in England in 2003-4.
Tumour morphology largely determines survival length and morbidity prevalence. A Survivorship Outcome Framework was therefore applied separately to glioblastoma, meningioma and nerve sheath tumour cohorts in order to investigate differences in survivorship between these groups. Comorbidity prevalence was compared with a random sample of age- and sex-matched patients with an inpatient record.
63.8% and 87.2% of patients with meningiomas and nerve sheath tumours respectively survived 7+ years, whereas 78.7% of glioblastoma patients lived less than 12 months. Patients with meningiomas or nerve sheath tumours who survived 12 months experienced significantly higher levels of nervous system morbidities than a comparison group. Meningioma patients also experienced significantly higher levels of endocrine (ratio of 2.4), respiratory (1.5), musculoskeletal (2.9) and circulatory (2.0) morbidities.
If long-term patient outcomes are to be understood and improved, it is essential to make the greatest use possible of readily available data generated and held by the NHS. This study demonstrates the value of analysing routinely-collected data to unpick variations in survivorship outcomes within tumour types. The use of a non-cancer comparison group allows the variation in and burden of morbidity to be better understood, which in future could enable more tailored care pathways to be put in place.