The well-being of patients with epilepsy goes beyond seizure control alone. In prescribing drug therapy, a dialogue based on listening and trust between patients and specialists is important. These are the conclusions that emerge from the study ‘The value of the opinion of people with epilepsy to improve the quality of care’, conducted by the Cerismas (Center for Research and Studies in Health Management) of the Catholic University of the Sacred Heart of Milan with the support by Ucb Pharma, and presented at the 45th National Congress of the Lice, the Italian League against epilepsy, taking place in Padua from 8 to 10 June.
The study was conducted on 500 patients in 6 Italian reference centers, with the aim of describing the clinical-organizational path of taking care of people with epilepsy in Italy, using that of the patients themselves as a perspective. Four central aspects emerge from the research: the need for a proactive and integrated approach; the importance of focusing on the path of taking charge of the patient as a whole, not only on the individual phases of the disease; ‘proximity’, that is the ability to approach the individual and specific needs of the patient and to listen to him; finally, organizational and technologically innovative solutions that could really change the lives of people with epilepsy.
“Many patients with epilepsy live in more complex situations than those described in the drug registration studies. For this reason it is important to pay attention to the follow-up phases of the therapeutic path and to the observation of specific clusters of patients”, reads a note. “Drugs that ‘work’, but have a negative impact on the quality of life, are not necessarily the right choice. For this reason, great attention must be paid to the possible side effects of the therapies, and to any phenomena of interaction with other drugs, considering the fact that about a quarter of people with epilepsy also suffer from other diseases “.