Taking care of patients with brain tumor-related epilepsy: results from an Italian survey

To date, no data have been published in literature regarding either a “model” or systematic approach to caring for patients with brain tumor-related epilepsy (BTRE). In Italy, there are numerous dedicated centers for epilepsy. Study aims: to investigate how many BTRE patients were followed by these specialized centers, independent of histological grade; to have a national snapshot of the range of care issues concerning these patients, with surveys completed by Italian centers adhering to the Italian League Against Epilepsy (LICE) study group for BTRE. Each participating Italian center received a survey requesting: description of organizational structure/service model for diagnosis and treatment of epilepsy; number of patients followed (from 1/2010 to 12/2011); services offered, within the same institution or in close proximity; degree of access to colleagues from other disciplines for discussion of cases, with indication of departments/areas of specialization were sought. Thirty out of the 35 centers adhering to LICE study group completed the survey indicating total of 2,528 patients with BTRE had been treated with 940 new patients/year. Data regarding the care model, service offerings, referral sources were collected. This study is a first collaborative project of epilepsy centers throughout Italy, aimed at collecting data on a national scale. Results indicate: (1) 2,528 patients had been followed by participating centers and account for 21 % of estimated patients with BTRE in Italy (2) difficulties in organizing meetings with other specialists (e.g. for discussion of cases/patient briefings); (3) need for multidisciplinary integration with other specialists as a priority area for intervention.