patient care perspectives
Resilience and Quality of Life in Patients With Epilepsy
Patient resilience is a key factor in quality of life among individuals with epilepsy. Even among patients with intractable seizures, having a good quality of life is still possible, and strategies to cultivate or improve resilience may be helpful.
“Individuals who suffer from seizures, particularly when uncontrolled, face circumstances that most of us cannot even imagine. They may be fine 1 minute and in the throes of a violent generalized tonic-clonic seizure the next. All of this is completely unpredictable.”
Resilience is defined as a patient’s ability to demonstrate positive adaptation in the face of significant adversity. There is a strong correlation between good quality of life and resilience, even among those with ongoing seizures. Poor quality of life and reduced resilience are linked to poor seizure control and common comorbidities such as depression and anxiety. In my practice setting, we use the Neurological Disorders Depression Inventory for Epilepsy and the Generalized Anxiety Disorder-7 scales to screen for depression and generalized anxiety, respectively. If depression and/or anxiety are present, they must be addressed and treated. Doing so has the potential to dramatically improve a patient’s quality of life. In addition, it is important to address other factors that are related to quality of life and resilience.
Individuals who suffer from seizures, particularly when uncontrolled, face circumstances that most of us cannot even imagine. They may be fine 1 minute and in the throes of a violent generalized tonic-clonic seizure the next. All of this is completely unpredictable. Fortunately, multiple strategies are available that help to improve resilience among people with epilepsy. Frequently evaluating medications is important, as many antiepileptic drugs have side effects. These side effects, which include somnolence and dizziness, among others, can adversely impact quality of life. Patients can be switched to better-tolerated medications. Strong social networks are also beneficial, especially among adults with uncontrolled seizures who require reliable access to transportation to maintain employment. Strong family relationships and friendships are crucial. Sometimes, just having a spouse, a parent, or a friend who takes an active role in their epilepsy journey can help such patients succeed.
A strengths-based approach, as opposed to a deficit-based approach, seems to be useful in improving resilience. For a long time, we were focused on limitations and avoidance of various activities, such as driving a car, bathing or swimming alone, and working at heights. Strengths-based approaches aid in cultivating the patients’ own psychological strengths and identifying strategies to work around their disease. This includes using public transportation or transportation services companies (eg, Uber, Lyft) to preserve mobility and independence. It also includes seeking employment with companies that offer flexible working conditions and demonstrate a willingness to accommodate limitations. These strategies to improve resilience have the potential to positively impact quality of life and help people with epilepsy live the best life possible.
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Ring A, Jacoby A, Baker GA, Marson A, Whitehead MM. Does the concept of resilience contribute to understanding good quality of life in the context of epilepsy? Epilepsy Behav. 2016;56:153-164.
Tedrus GMAS, Limongi JM Jr, Zuntini JVR. Resilience, quality of life, and clinical aspects of patients with epilepsy. Epilepsy Behav. 2020;103(pt A):106398.