MEW network self-management program characteristics and lessons learned through the RE-AIM framework.

RATIONALE: The promotion of evidence-based self-management support for people living with chronic conditions such as epilepsy is a public health priority. Epilepsy self-management encompasses three general areas: (1) treatment management, (2) seizure management, and (3) lifestyle management. Interventions focusing on self-management have increased quality of life and adherence to treatment. This study assesses and synthesizes the Managing Epilepsy Well Network (MEWN) program implementation experiences using the RE-AIM framework. This research informs the quality and rigor of MEWN program dissemination and implementation efforts to assess whether these programs are being implemented and their scalability. METHODS: The study data were derived from a MEWN Self-management Program Survey conducted with currently active MEWN researchers through an online survey and review of program publications and archival documents. Survey data were obtained from either the principal investigator or study team for the UPLIFT, HOBSCOTCH, SMART, MINDSET, TIME, and PACES programs. The survey questionnaire included 6 sections consisting of 68 questions and focused on the RE-AIM dimensions and respondent characteristics. The RE-AIM dimensions included: (1) Reach, (2) Effectiveness, (3) Adoption (number of and type of adopting sites), (4) Implementation (retention rate, barriers to implementation), and (5) Maintenance. RESULTS: Across the MEWN programs, participation (44-120 individuals) and delivery methods (community, clinic, or asynchronous; group or individual) ranged with most programs predominantly reaching White or African American participants. Common program outcome measures included clinical outcomes (e.g., depression, quality of life, seizure frequency) and indicators of self-management behaviors (e.g., problem-solving; self-efficacy). Initial efficacy trials suggested programs were effective in changing some of their targeted outcomes (effectiveness). Most programs were implemented in clinical settings and several programs are being replicated or adapted to different geographical (e.g., urban, rural, suburban) or demographic (e.g., race, age) settings (adoption). Program delivery methods involved a mixture of program staff, peer educators, and researchers. Implementation enabling factors included partnerships with local epilepsy organizations and the inclusion of peer educators. Retention rates for all programs averaged 83.6%. Internal barriers included recruitment and lack of sufficient resources for participants. External barriers included clinical staff buy-in, staffing, and insufficient funding for support staff. Despite uncertain funding, all programs offered next steps to sustain their initiatives such as packaging their programs, initiating adoption with regional organizations, and supporting organizational readiness (maintenance). Dissemination efforts included partnering with other organizations, provision of training and technical assistance, and partnering with national organizations on grant opportunities to scale up existing programs. CONCLUSION: These data showcase the impact of the MEWN self-management interventions on health and quality of life. These programs are employing training, readiness assessment, technical assistance, and development of partnerships to increase program scalability. Finally, program adaptations are being conducted to expand the interventions to other populations to address health inequalities. The lessons learned are critical for other interventions attempting to increase the translation of their programs to other settings.

Premature discontinuation among individuals with epilepsy participating in epilepsy self-management research interventions.

OBJECTIVE: The Managing Epilepsy Well (MEW) Network conducts epilepsy self-management (ESM) intervention development, testing, and archival clinical trials data analyses in the MEW Network Integrated Database (MEW-DB). However, not all trial participants fully benefit from ESM due to prematurely discontinuing program participation. This analysis sought to identify demographic and clinical predictors of premature discontinuation (PD) of ESM interventions available in the MEW-DB. METHODS: Data from prior studies were included if: 1) they were prospective trials testing an ESM intervention, 2) included baseline assessment and at least one post-intervention assessment, and 3) included data on PD. Dependent variables were all-cause PD, categorized as a binary variable (yes/no) and time to PD for the intervals between baseline and follow-up visit 1 (V1; approximately week 12) and visit two (V2; approximately week 24). Multivariable Cox proportional hazard models were used to identify factors affecting PD time-point. Explanatory variables included age, gender, race/ethnicity, education, employment, income, marital status, psychiatric comorbidities, depressive severity, anxiety symptoms, self-efficacy, number of anti-seizure medications (ASMs), health status, seizure frequency, and study design. RESULTS: Six prior MEW-DB studies were included, consisting of 627 people, where 624 were assigned to ESM or to control. PD among randomized individuals was 14.3 % by V1 and 15.7 % by V2. Predictors for V1 PD were treatment (ESM) vs. control arm, more severe depressive symptoms and having schizophrenia. Predictors for V2 PD were younger age, white race, more severe depressive symptoms and having schizophrenia. SIGNIFICANCE: While ESM approaches can improve multiple health outcomes among people with epilepsy, nearly one in six individuals prematurely discontinues their program. These findings suggest that ESM interventionists need to be particularly attentive to program retention over the first 3 months after ESM initiation. Younger people with epilepsy, those who self-identify as white, those with schizophrenia, and/or more severe depressive symptoms may need additional support for engagement.

Effectiveness of a Self-Management Program to Improve Cognition and Quality of Life in Epilepsy: A Pragmatic, Randomized, Multicenter Trial.

BACKGROUND AND OBJECTIVES: We conducted a multisite, pragmatic replication trial at 4 New England epilepsy centers to determine the effectiveness of Home-Based Self-Management and Cognitive Training Changes Lives (HOBSCOTCH) in a real-world setting and to assess feasibility of a virtual intervention. METHODS: HOBSCOTCH is an 8-session intervention addressing cognitive impairment and quality of life (QoL) for people with epilepsy (PWE). Participants were recruited from epilepsy centers in 4 states and block-randomized into the following groups: in-person HOBSCOTCH (H-IP), virtual HOBSCOTCH (H-V), and waitlist control. Outcome measures were assessed for all groups at baseline, 3 months, and 6 months; intervention groups received long-term follow-up at 9 and 12 months. RESULTS: A total of 108 participants were recruited, of whom 85 were included in this analysis (age at baseline 47.5 ± 11.5 years; 68% female). Participants completing the in-person intervention (H-IP) had a 12.4-point improvement in QoL score compared with controls (p < 0.001). Pairwise comparisons found a 6.2-point treatment effect for subjective cognition in the H-IP group (p < 0.001). There were no meaningful group differences in objective cognition or health care utilization at any time points and the treatment effect for QoL diminished by 6 months. The virtual intervention demonstrated feasibility but did not significantly improve outcomes compared with controls. Within-group analysis found improvements in QoL for both H-V and H-IP. DISCUSSION: This study replicated the effectiveness of the HOBSCOTCH program in improving QoL for PWE. The study was conducted prior to the COVID-19 pandemic, but the distance-delivered intervention may be particularly well-suited for the current environment. Future research will explore modifications designed to improve the efficacy of H-V and the sustainability of HOBSCOTCH's treatment effect. TRIAL REGISTRATION INFORMATION: ClinicalTrials.gov (NCT02394509). CLASSIFICATION OF EVIDENCE: This study provides Class III evidence that in-person HOBSCOTCH delivery improved subjective measures of cognition in persons with epilepsy.

Rapid and reversible recruitment of early visual cortex for touch.

BACKGROUND: The loss of vision has been associated with enhanced performance in non-visual tasks such as tactile discrimination and sound localization. Current evidence suggests that these functional gains are linked to the recruitment of the occipital visual cortex for non-visual processing, but the neurophysiological mechanisms underlying these crossmodal changes remain uncertain. One possible explanation is that visual deprivation is associated with an unmasking of non-visual input into visual cortex. METHODOLOGY/PRINCIPAL FINDINGS: We investigated the effect of sudden, complete and prolonged visual deprivation (five days) in normally sighted adult individuals while they were immersed in an intensive tactile training program. Following the five-day period, blindfolded subjects performed better on a Braille character discrimination task. In the blindfold group, serial fMRI scans revealed an increase in BOLD signal within the occipital cortex in response to tactile stimulation after five days of complete visual deprivation. This increase in signal was no longer present 24 hours after blindfold removal. Finally, reversible disruption of occipital cortex function on the fifth day (by repetitive transcranial magnetic stimulation; rTMS) impaired Braille character recognition ability in the blindfold group but not in non-blindfolded controls. This disruptive effect was no longer evident once the blindfold had been removed for 24 hours. CONCLUSIONS/SIGNIFICANCE: Overall, our findings suggest that sudden and complete visual deprivation in normally sighted individuals can lead to profound, but rapidly reversible, neuroplastic changes by which the occipital cortex becomes engaged in processing of non-visual information. The speed and dynamic nature of the observed changes suggests that normally inhibited or masked functions in the sighted are revealed by visual loss. The unmasking of pre-existing connections and shifts in connectivity represent rapid, early plastic changes, which presumably can lead, if sustained and reinforced, to slower developing, but more permanent structural changes, such as the establishment of new neural connections in the blind.