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

Ridsdale L, Wojewodka G, Robinson E, Landau S, Noble A, Taylor S, Richardson M, Baker G, Goldstein LH; SMILE Team.. Characteristics associated with quality of life among people with drug-resistant epilepsy. J Neurol. 2017 May 26. doi:10.1007/s00415-017-8512-1. [Epub ahead of print]

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.

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The clinicians performed this work to describe what clinical and psycho–social characteristics are associated with quality of Life (QoL) among UK participants in advance of evaluating an epilepsy self–management course. Developing and evaluating ways to reduce psychological and social disadvantage are likely to be of primary importance if QoL is the main outcome in epilepsy trials. Educational courses may not change QoL, but be one component supporting self–management for people with long–term conditions, such as epilepsy.

Methods

The clinicians enrolled 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).

Results

In this study, mean age was 42 years, 54% were female, and 75% white.

Since diagnosis, median time was 18 years, and 69% experienced ≥10 seizures in the prior year.

About 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.

Participants’ mean score was 66, with a wide range (25–99) while a maximum QOLIE-31-P score is 100.

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 correlated with low QOLIE-31-P scores.

UK people with epilepsy and persistent seizures experience low QoL despite specialist care.

https://www.mdlinx.com/neurology/medical-news-article/2017/05/30/epilepsy-quality-of-life-anxiety-depression/7192559/?category=latest&page_id=1