Elevating Epilepsy Care: A New Model Puts People First
A groundbreaking new approach to epilepsy care, centered on the individual and incorporating a holistic perspective, was unveiled recently. The initiative, developed through a partnership between neurologists, researchers, patient advocates and caregivers, aims to revolutionize how epilepsy is managed, shifting the focus from solely treating the disease to embracing the whole person.
“It’s not just about treating the disease,” explained Tarcisio Levorato, president of the AIE, highlighting the key principle behind the new approach. “We need to take care of people with epilepsy in their entirety — their emotions, relationships, life plans. This protocol represents a humanistic vision of medicine that we hope will be adopted elsewhere.”
This unique protocol stemmed from direct collaboration with patients and caregivers, who actively participated in shaping its ten fundamental points. The document emphasizes understanding the diverse needs of individuals living with epilepsy, recognizing that effective treatment goes beyond simply reducing seizure frequency.
“We asked patients what they really needed,” shared Giancarlo Di Gennaro, head of the center for the diagnosis and treatment of epilepsy at Neuromed. “Their answers were clear. We need to listen, understand, and build personalized plans that take into account their psychological, social, and family life.”
The foundation of the new protocol is a multidisciplinary approach, seamlessly integrating biological, psychological, and social aspects into treatment plans. By addressing the individual’s unique needs and experiences, the protocol aims to significantly improve the overall quality of life for individuals living with epilepsy. Angelo Labate, coordinator of the Sin epilepsy study group, underscores the need for this paradigm shift.
“The modern neurologist must look beyond the disease,” he emphasized. “We need to understand the human being as a whole, overcoming the fragmentation of medicine and integrating various specialized skills.”
The Neuromed Institute has embraced this new vision with fervor, investing not only in cutting-edge technology to enhance clinical care but also in creating a welcoming and supportive environment for patients and their families.
“We want this to be a place where people feel welcomed, understood, and supported at every stage of their journey,” said Gabriele Trombetta, general director of Neuromed.
He stressed that their vision extends beyond the confines of the hospital, seeking to ensure continuity of care between hospital and daily life.
Levorato emphasized the critical role of patients’ perspectives in shaping this new direction in epilepsy care.
“We live with epilepsy 24 hours a day, every day of the year. We cannot only be seen as patients during clinical visits. We need continuous support that considers all aspects of our existence,” Levorato stressed.
The project also embraces a novel approach to evaluating treatment success. Qualitative research is being used to gather firsthand feedback from patients on how their quality of life is impacted by treatment, going beyond traditional metrics. “We ask patients how they feel, if they truly feel their lives are improving,” explained Di Gennaro. “It’s a fundamental change in perspective. We are building a medicine that is truly for people.”
The hope is that this model will be adopted more broadly. “We have demonstrated that it is possible to build a ‘tailored’ approach to care, centered on the individual and based on collaboration,” concluded Levorato. “Now it’s time to shatter traditional views and transform healthcare for people living with epilepsy.”
The unveiling was not simply a presentation but a moment of reflection. This new model reflects a yearning for a medical approach that delves deeper, one that recognizes the INDIVIDUAL, ultimately forging a brighter future for those living with epilepsy.
How does this multidisciplinary protocol contribute to improving communication and collaboration between patients, caregivers, and healthcare professionals?
Let’s shine a light on this revolutionary new approach to epilepsy care. Joining us today is Dr. [Guest Name], a leading epilepsy specialist and advocate for patient-centered care. Welcome, Dr. [Guest Name]!
**Interviewer:** Dr. [Guest Name], can you tell us about this groundbreaking new protocol for epilepsy care?
**Dr. [Guest Name]:** This new protocol is truly a paradigm shift. We’re moving away from simply focusing on reducing seizure frequency and embracing a holistic approach that considers the individual’s emotional, social, and familial needs. This protocol was developed through close collaboration with patients, caregivers, researchers, and neurologists, ensuring that it truly reflects what people living with epilepsy need.
**Interviewer:** That’s inspiring! How does this multidisciplinary approach work in practice?
**Dr. [Guest Name]:** Think of it as a team effort. We integrate specialists from various fields – neurologists, psychologists, social workers – to create a personalized treatment plan for each individual. This could involve anything from medication management and therapy to lifestyle changes and support groups. The focus is on improving the overall quality of life for individuals with epilepsy.
**Interviewer:** What kind of impact do you anticipate this protocol will have on people living with epilepsy?
**Dr. [Guest Name]:** I believe this protocol has the potential to transform lives. By addressing the whole person, not just the disease, we can empower individuals with epilepsy to live fuller, more meaningful lives. [Optional: You can personalize this further by mentioning specific benefits like reducing stigma, improving mental health, and increasing independence].
**Interviewer:** This all sounds incredibly promising. Thank you for sharing this important information with us, Dr. [Guest Name].
**[Note: ** Replace bracketed information with the actual guest’s name and any specific details you want to include.]
