Bryan Patenaude

Quality of life in epilepsy-31 inventory (QOLIE-31) scores: A global comparison.

Quality of life is a pragmatic endpoint for understanding the experience of people with epilepsy (PWE) in low- and middle-income countries (LMICs), where>80% of PWE reside. However, the literature is bereft of QOL in epilepsy (QOLIE) studies among LMICs and knowledge of the variation in QOLIE globally. We therefore performed a Medline search of original research studies using the quality of life in epilepsy-31 inventory (QOLIE-31) in a recent fifteen-year period (2000-2015). Each of the 194 countries listed by the World Health Organization (WHO) was individually included as search terms. Differences in QOLIE were tested across WHO world regions and World Bank country income group classifications. Sixteen percent of all countries (n=31) reported on 7255 individuals, including only 8 LMICs. The global mean QOLIE-31 score was 59.8 (standard deviation (SD): 8.0), with a range from 42.1 (SD: 4.1) in the Russian Federation to 82 (SD: 32.8) in Canada. There was a statistically significant difference seen in the QOLIE-31 score by world region and income category, with lower country income level associated with worse QOL (test for trend, p<0.0001). There exists substantial global variation in QOLIE, and country income level may play a role. Understanding what contributes to international differences in QOLIE can help reduce disparities in QOL among PWE worldwide.

Quality of life in epilepsy in Bhutan

PURPOSE To assess the quality of life in epilepsy (QOLIE) among adults in the lower middle-income country of Bhutan and assess the potential demographic and clinical associations with better QOLIE. METHODS People with clinically diagnosed epilepsy were prospectively enrolled at the Jigme Dorji Wangchuck National Referral Hospital in Thimphu (2014-2015). Regression models were constructed to assess the potential impact of age, sex, residence in the capital city, wealth quintile, educational attainment, seizure in the prior year, seizures with loss of consciousness, self-reported stigma score, and need for multiple antiepileptic drugs. RESULTS The mean Bhutanese 48.4/100 ± 17.3 [corrected] score among 172 adults (mean age 31.1 years, 93 female) was 48.9/100±17.7. Younger age, lower educational attainment level, and increased self-perceived stigma were each observed to have an independent, negative association with QOLIE (p<0.05), while a patients wealth quintile, sex, seizure frequency, seizure type and number of antiepileptic drugs were not. Education appeared to be most strongly associated with QOL at the high school and college levels. CONCLUSIONS There are potentially modifiable associations with low QOLIE. Addressing the educational level and self-perceived stigma of PWE may have an especial impact. The low QOLIE in Bhutan may reflect cultural approaches to epilepsy, health services, or other factors including those outside of the health sector.

Knowledge, attitudes and practices regarding epilepsy in the Kingdom of Bhutan

OBJECTIVE To assess the knowledge, attitudes and practices of epilepsy among healthcare workers (HCWs) and people with epilepsy (PWE) living in Bhutan. METHODS A survey with similar questions was distributed to HCWs and PWE (2014-2015). Responses were compared between the two groups. A Stigma Scale in Epilepsy Score was tested for an independent association with patient age, sex, years of education and presence of seizure freedom using regression models. RESULTS PWE (n=177), when compared to HCWs (n=75), were more likely to believe that epilepsy is contagious; epilepsy results from karma or past actions; PWE need help in school; and people with epilepsy have spiritual powers (p<0.05 for each comparison). Among people with epilepsy, a higher stigma score was independently associated with lower educational attainment (p=0.006) and presence of a seizure in the prior year (p=0.013), but not age, sex or anti-epileptic drug side effects. CONCLUSIONS While knowledge of epilepsy was overall fairly high, PWE more often held certain stigmatizing beliefs, including theories of contagion and a relationship between seizures and spiritual powers. Higher educational level and seizure freedom were associated with lower stigma, underscoring their importance in stigma reduction.

Medication prescribing and patient-reported outcome measures in people with epilepsy in Bhutan

OBJECTIVE The aim of this study was to assess medication prescribing and patient-reported outcomes among people with epilepsy (PWE) in Bhutan and introduce criteria for evaluating unmet epilepsy care needs, particularly in resource-limited settings. METHODS People with epilepsy in Bhutan (National Referral Hospital, 2014-2015) completed a questionnaire, the Quality of Life in Epilepsy Inventory (QOLIE-31), and an electroencephalogram (EEG). Management gap was the proportion of participants meeting any of six prespecified criteria based on best practices and the National Institute for Health and Care Excellence (NICE) guidelines. RESULTS Among 253 participants (53% female, median: 24years), 93% (n=235) were treated with antiepileptic drugs (AEDs). Seventy-two percent (n=183) had active epilepsy (≥1 seizure in the prior year). At least one criterion was met by 55% (n=138) of participants, whereas the treatment gap encompassed only 5% (n=13). The criteria were the following: 1. Among 18 participants taking no AED, 72% (n=13) had active epilepsy. 2. Among 26 adults on subtherapeutic monotherapy, 46% (n=12) had active epilepsy. 3. Among 48 participants reporting staring spells, 56% (n=27) were treated with carbamazepine or phenytoin. 4. Among 101 female participants aged 14-40years, 23% (n=23) were treated with sodium valproate. 5. Among 67 participants reporting seizure-related injuries, 87% (n=58) had active epilepsy. 6. Among 111 participants with a QOLIE-31 score below 50/100, 77% (n=86) had active epilepsy. Years since first AED treatment (odds ratio: 1.07, 95% CI: 1.03, 1.12) and epileptiform discharges on EEG (odds ratio: 1.95, 95% CI: 1.15, 3.29) were significantly associated with more criteria met. CONCLUSIONS By defining the management gap, subpopulations at greatest need for targeted interventions may be prioritized, including those already taking AEDs.

The impact of ART initiation on household food security over time

While evidence suggests that adequate nutrition contributes to the efficacy of ART, the potential causal impact of ART initiation on household food security has not been thoroughly examined. In this study, we present some of the first causal evidence of the impact of ART initiation on household food security. We employ a quasi-experimental design, regression discontinuity, over 5540 individuals from an ongoing population cohort study in KwaZulu-Natal, South Africa, by utilizing the CD4 count-based ART eligibility threshold to examine the impact of ART initiation on household food security. We find that ART initiation causes a significant increase in the probability of food insecurity in the first year, which diminishes to zero within three years of initiation. Within the first year, ART initiation was found to significantly increase the probabilities that (1) the surveyed adult had missed any food in the past month by 10.2 percentage points (coefficient = 0.102, 95%CI = [0.039, 0.166]); (2) any adult in the household had missed a meal in the past month by 15.2 percentage points (coefficient = 0.152, 95%CI = [0.073, 0.231]); and (3) any child in the household had missed a meal in the past month by 8.9 percentage points (coefficient = 0.0898, 95%CI = [0.0317, 0.148]). While we cannot definitively isolate the mechanistic pathways from ART to household food security, our results are consistent with ART affecting food security through household resource strain and patient appetite recovery. Several policies could mitigate the negative impact of ART on food security, in particular food parcels or food vouchers for ART patients in the first two years after treatment initiation.

Corrigendum to “Quality of life in epilepsy in Bhutan” [Seizure 39 (2016) 44–48]

The authors regret that there were errors in the final published article. The corrected version is given here: The QOLIE-31 score in the abstract should be 48.4/100 17.3. The first sentence under the Results heading should read: “The QOLIE score in Bhutanese PWE was low (median 48.5, mean 48.4, standard deviation 17.3), with a statistically significantly different overall QOLIE-31 score between male and female participants.” The last sentence under the first paragraph of the Results heading should read: “Of the seven subscales, the seizure worry score had the lowest scores (mean 33.1, SD 24.0). The authors would like to apologise for any inconvenience caused.