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.
_________________________________________________________________________
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
