Clinical correlates of perceived stigma among people living with epilepsy enrolled in a self-management clinical trial.

BACKGROUND AND PURPOSE: Stigma is a pervasive barrier for people living with epilepsy (PLWE) and can have substantial negative effects. This study evaluated clinical correlates of perceived stigma in a research sample of PLWE considered to be at high risk due to frequent seizures or other negative health events. METHODS: Analyses were derived from baseline data from an ongoing Centers for Disease Control and Prevention (CDC)-funded randomized controlled trial (RCT) testing an epilepsy self-management approach. Standardized measures assessed socio-demographics, perceived epilepsy stigma, epilepsy-related self-efficacy, epilepsy self-management competency, health literacy, depressive symptom severity, functional status, social support and epilepsy-related quality of life. RESULTS: There were 160 individuals, mean age of 39.4, (Standard deviation/SD=12.2) enrolled in the RCT, 107 (66.9 %) women, with a mean age of epilepsy onset of 23.9 (SD 14.0) years. The mean seizure frequency in the prior 30 days was 6.4 (SD 21.2). Individual factors correlated with worse perceived stigma were not being married or cohabiting with someone (p = 0.016), lower social support (p < 0.0001), lower self-efficacy (p < 0.0001), and lower functional status for both physical health (p = 0.018) and mental health (p < 0.0001). Perceived stigma was associated with worse depressive symptom severity (p < 0.0001). Multivariable linear regression found significant independent associations between stigma and lower self-efficacy (ß -0.05; p = 0.0096), lower social support (ß -0.27; p = 2.4x10-5, and greater depression severity (ß 0.6; p = 5.8x10-5). CONCLUSIONS: Perceived epilepsy stigma was positively correlated with depression severity and negatively correlated with social support and self-efficacy. Providers caring for PLWE may help reduce epilepsy stigma by screening for and treating depression, encouraging supportive social relationships, and providing epilepsy self-management support. Awareness of epilepsy stigma and associated factors may help reduce some of the hidden burden borne by PLWE.

Clinical correlates of medication adherence in individuals with bipolar disorder and comorbid hypertension.

OBJECTIVE: Individuals with bipolar disorder (BD) have high rates of suboptimal medication adherence, medical illness, and premature mortality, largely from cardiovascular causes. This analysis examined the association between adherence to antihypertensive and BD medications and clinical symptoms in patients with BD and comorbid hypertension (HTN) from an ongoing trial to optimize adherence. METHOD: Inclusion criteria were a BD diagnosis, treatment with antihypertensives, adherence challenges, and poorly controlled HTN. Adherence was measured via self-report using the Tablets Routine Questionnaire and using eCAP, an electronic pillcap which captures openings. Average systolic blood pressure (SBP) was calculated from 12 readings over 1 week. The Montgomery-Asberg Depression Rating Scale (MADRS) and the Brief Psychiatric Rating Scale (BPRS) assessed BD symptoms. RESULTS: A total of 83 participants with BD and HTN were included. Adherence to BD and antihypertensive medications were positively correlated. eCAP openings showed more missed doses than self-reported antihypertensive adherence. BD medication adherence was positively correlated with BPRS at baseline; antihypertensive adherence was negatively correlated with SBP at screening. Antihypertensive adherence improved and SBP decreased between screening and baseline. CONCLUSIONS: Adherence levels fluctuated over time and differed based on measurement method in people with comorbid BD and HTN. Self-reported BD adherence was positively related to global psychiatric symptoms and antihypertensive adherence was related to better SBP control. Monitoring both medication and blood pressure led to change in self-reported adherence. BD symptom severity may indicate poor adherence in patients with BD and should be considered in treatment planning.

A case study in science-to-service application of epilepsy self-management.

AIMS: Epilepsy self-management (ESM), the overall approach of reducing seizures and optimizing whole-health, is a targeted approach to improve population health for people with epilepsy (PWE). "Self-management for people with epilepsy and a history of negative health events" (SMART) is an 8-session group-format, remotely delivered ESM. This report describes the evolution of SMART development, testing and scale-up, taking advantage of ESM team expertise, community relationships and infrastructure established by social service agencies that deliver support to PWE. METHODS: This is a case-study dissemination and implementation (D&I) science-to-service model using the RE-AIM framework approach (Reach, Effectiveness, Adoption, Implementation, and Maintenance) focused on 5 dimensions of individual- and setting-level outcomes important to program adoption, impact and sustainability. Performance evaluations include participation representativeness, ESM attendance and acceptability as well as change in relevant health outcomes. RESULTS: SMART D & I is implemented via a collaboration of 3 unique regional, epilepsy-focused nonprofit social service organizations and a university team that developed SMART. The ongoing collaboration is expanding SMART delivery to PWE across 13 U.S. states. Thus far, we have trained 17 Nurse and Peer Educators (NEs and PEs). PEs (N = 10) have a mean age 51.1 (SD 10.4) years and a mean age of epilepsy diagnosis of 29.4 (SD 19.3). Of 128 participants offered SMART, and who provided age data (N = 86) mean age was 37.7 years (SD 14.4). Of participants who provided data on gender and race (N = 89), 65 were women (73.9 %), 18 African-American (20.2 %). Mean age of epilepsy diagnosis was 19.4 years (SD 16.6) and 59 (52.2 %) of PWE reported having seizures in the last 30 days pre-SMART sessions. Among those with attendance data (N = 103), mean number of SMART groups attended was 5.7 (SD 2.3). Mean values for past 30-day seizure frequency, 9-item Patient Health Questionnaire (PHQ-9), Generalized Anxiety Disorder Inventory (GAD-7) and 10-item Quality of Life in Epilepsy Scale (QOLIE-10) for PWE that provided both pre and post SMART data were 7.6 (SD 15.8) vs 2.8 (SD 3.4) p = 0.3, 7.63 (SD 6.6) vs 6.3 (SD 5.7) p = 0.95, 6.6 (SD 5.7) vs 6.67(SD 5.3) p = 0.47 and 2.8 (SD 0.8) vs 2.7 (SD 1.0) p = 0.07 respectively. CONCLUSIONS: Implementing ESM using a RE-AIM/Iterative RE-AIM framework links intervention developers and community partners. While PWE have substantial barriers to health, including frequent seizures, they are able engage in the SMART program. Although a major limitation to patient-level evaluation is challenges in collecting post-SMART follow-up data, preliminary findings suggest a trend for improved quality of life.