Characteristics associated with quality of life among people with drug-resistant epilepsy

Abstract

Quality of Life (QoL) is the preferred outcome in non-pharmacological trials, but there is little UK population evidence of QoL in epilepsy. In advance of evaluating an epilepsy self-management course we aimed to describe, among UK participants, what clinical and psycho-social characteristics are associated with QoL. We recruited 404 adults attending specialist clinics, with at least two seizures in the prior year and measured their self-reported seizure frequency, co-morbidity, psychological distress, social characteristics, including self-mastery and stigma, and epilepsy-specific QoL (QOLIE-31-P). Mean age was 42 years, 54% were female, and 75% white. Median time since diagnosis was 18 years, and 69% experienced ≥10 seizures in the prior year. Nearly half (46%) reported additional medical or psychiatric conditions, 54% reported current anxiety and 28% reported current depression symptoms at borderline or case level, with 63% reporting felt stigma. While a maximum QOLIE-31-P score is 100, participants’ mean score was 66, with a wide range (25–99). In order of large to small magnitude: depression, low self-mastery, anxiety, felt stigma, a history of medical and psychiatric comorbidity, low self-reported medication adherence, and greater seizure frequency were associated with low QOLIE-31-P scores. Despite specialist care, UK people with epilepsy and persistent seizures experience low QoL. If QoL is the main outcome in epilepsy trials, developing and evaluating ways to reduce psychological and social disadvantage are likely to be of primary importance. Educational courses may not change QoL, but be one component supporting self-management for people with long-term conditions, like epilepsy.

The effectiveness of a group self‐management education course for adults with poorly controlled epilepsy, SMILE (UK): A randomized controlled trial

“…Psychological symptoms were reported frequently, with 54% reporting current anxiety symptoms and 28% reporting current depression symptoms at borderline or case‐level. There was much variation in QoL scores from 24.5 to 97.6, and it was most strongly associated with presence or absence of psychological symptoms . This has also been reported elsewhere …”

“…However, using our baseline data, we found that seizure frequency was only weakly associated with QoL. We found psychological distress was most associated with lower QoL in our group of PWE . There is no literature evidence to suggest that a solely educational intervention has ever changed QoL after 12 months in people with epilepsy .…”

A 6‐month prospective randomized controlled trial of remotely delivered group format epilepsy self‐management versus waitlist control for high‐risk people with epilepsy

“…The relevance of depressive symptom severity to the quality of life and other outcomes in people with epilepsy is substantial, and for this reason, the Managing Epilepsy Well Network has prioritized a focus on mental health comorbidity . A study of people with poorly controlled epilepsy found that in the order of large to small magnitude, depression, low self‐mastery, anxiety, stigma, medical and psychiatric comorbidity, poor medication adherence, and more frequent seizures were associated with worse quality of life . A previous report by these investigators found that NHEs confined to ER visits and hospitalizations were more common in people with epilepsy and comorbid mental illness versus in people with epilepsy who did not have mental health comorbidity …”

Psychological treatments for adults and children with epilepsy: Evidence‐based recommendations by the International League Against Epilepsy Psychology Task Force

“…Even a single seizure is associated with reduced HRQOL . Several factors contribute to poor HRQOL, especially when seizure freedom cannot be achieved, including medication side effects, the number of antiepileptic drugs (AEDs), psychological symptoms (eg, depression), and psychosocial difficulties (eg, unemployment) …”