O9.03 * BRAIN TUMORS IN SWEDEN: DATA FROM A POPULATION BASED REGISTRY 1999-2012

Abstract

BACKGROUND: The annual incidence of adult patients diagnosed with a high grade glioma (WHO grade III-IV) is approximately 400 in Sweden. The corresponding figures for low grade glioma and meningioma is 100 and 400, respectively, in a population of 9,6 million. Although clinical trials have provided us with significant amounts of data, they are confined by varying degrees of selection and publication bias. We here report on the Swedish brain tumor registry, which since the registry was launched in 1999 has provided us with data not only on histopathological diagnoses, but also on important aspects of surgical and medical management of these patients. The purpose is mainly quality assurance, but also as a resource for research. METHODS: A high registration compliance is mandatory, when claiming that a registry is truly population based. Indeed, three of the Swedish healthcare regions, constituting 40 % of the Swedish population, have had an almost complete registration. The following parameters are registered: diagnosis according to the SNOMED/WHO classification, symptoms, performance status, pre- and post operative radiology, tumor size and localization, extent of surgery and the occurrence of possible post-operative complications. In 2009 the registry was supplemented with a one year follow-up form, including detailed data of postoperative treatment, such as radiotherapy and/or chemotherapy, possible other treatment strategies, complications and toxicity, the occurrence of possible reoperation/s, participation in clinical trials, multidisciplinary conferences and availability of a contact nurse. RESULTS: Surgical radicality has increased as well as the use of early postoperative radiology. Survival of patients with high grade glioma has increased, especially in the age group 60-69, where the median survival has almost doubled since the registry was launched. A more active treatment attitude could contribute to these figures. At the same time waiting times for the pathological report has increased. Geographical differences do exist for many of the variables. DISCUSSION: Population based registration is an extremely valuable tool when evaluating and comparing the care of patients. Today, much effort is focused on patient reported outcome measures (PROM) and patient reported experience measures (PREM). They are probably more sensitive than conventional methods to assess improvements in medical care. Because of rapid disease progression causing short survival and/or the propensity to affect cognitive functions the patient group has considerable difficulties to make their voice heard in the society. We therefore believe that a report like the present one can contribute to the spread of knowledge and increase the awareness for this patient group among caregivers and policy makers.