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.

Keywords: Anxiety; Depression; Epilepsy; Quality of life; Self-mastery; Stigma.

Fig. 1

Participant recruitment process. In the first stage of opt-outs, an invitation letter was sent by consultants to patients who had attended their clinic in the past year (not illustrated here), with a 3-week window to opt out from future contact. Medical notes of patients not opting out were screened for eligibility criteria. Ineligibility at this stage was primarily not having at least two seizures in the previous year. In combination, the opt-out stages involved two invitation letters and two opportunities to opt out resulting in 1986 participants remaining in the pathway. Three attempts were made to contact patients and research workers contacted 1458 patients. Eligibility was assessed once again. Ineligibility at this stage was primarily not having two seizures within the past year or living outside the study’s catchment area. 681 patients verbally declined to participate and finally 404 participants consented and assessed for baseline data. These participants were randomized into treatment groups for the study. Grey boxes indicate the number of individuals who opted out/declined or were not eligible for the study

Fig. 2

Relationships between quality of life, psychological and self-management assessments in people with epilepsy. Quality of life in epilepsy was measured by QOLIE-31-P. a Anxiety, measured by HADS, was significantly associated with total QOLIE-31-P scores (r = −0.63, p < 0.001, n = 400). b Depression, measured by HADS, was significantly associated with total QOLIE-31-P scores (r = −0.66, p < 0.001, n = 400). c Self-mastery over epilepsy was significantly associated with total QOLIE-31-P scores (r = 0.49, p < 0.001, n = 399). Red line represents the fitted simple regression model