Dataset Information

The Managing Epilepsy Well Network:: Advancing Epilepsy Self-Management.

ABSTRACT: Epilepsy, a complex spectrum of disorders, affects about 2.9 million people in the U.S. Similar to other chronic disorders, people with epilepsy face challenges related to management of the disorder, its treatment, co-occurring depression, disability, social disadvantages, and stigma. Two national conferences on public health and epilepsy (1997, 2003) and a 2012 IOM report on the public health dimensions of epilepsy highlighted important knowledge gaps and emphasized the need for evidence-based, scalable epilepsy self-management programs. The Centers for Disease Control and Prevention translated recommendations on self-management research and dissemination into an applied research program through the Prevention Research Centers Managing Epilepsy Well (MEW) Network. MEW Network objectives are to advance epilepsy self-management research by developing effective interventions that can be broadly disseminated for use in people's homes, healthcare providers' offices, or in community settings. The aim of this report is to provide an update on the MEW Network research pipeline, which spans efficacy, effectiveness, and dissemination. Many of the interventions use e-health strategies to eliminate barriers to care (e.g., lack of transportation, functional limitations, and stigma). Strengths of this mature research network are the culture of collaboration, community-based partnerships, e-health methods, and its portfolio of prevention activities, which range from efficacy studies engaging hard-to-reach groups, to initiatives focused on provider training and knowledge translation. The MEW Network works with organizations across the country to expand its capacity, help leverage funding and other resources, and enhance the development, dissemination, and sustainability of MEW Network programs and tools. Guided by national initiatives targeting chronic disease or epilepsy burden since 2007, the MEW Network has been responsible for more than 43 scientific journal articles, two study reports, seven book chapters, and 62 presentations and posters. To date, two programs have been adopted and disseminated by the national Epilepsy Foundation, state Epilepsy Foundation affiliates, and other stakeholders. Recent expansion of the MEW Network membership will help to extend future reach and public health impact.

SUBMITTER: Sajatovic M

PROVIDER: S-EPMC6267934 | biostudies-literature | 2017 Mar

REPOSITORIES: biostudies-literature

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Publications

The Managing Epilepsy Well Network:: Advancing Epilepsy Self-Management.

Sajatovic Martha M Jobst Barbara C BC Shegog Ross R Bamps Yvan A YA Begley Charles E CE Fraser Robert T RT Johnson Erica K EK Pandey Dilip K DK Quarells Rakale C RC Scal Peter P Spruill Tanya M TM Thompson Nancy J NJ Kobau Rosemarie R

American journal of preventive medicine 20170301 3 Suppl 3

Epilepsy, a complex spectrum of disorders, affects about 2.9 million people in the U.S. Similar to other chronic disorders, people with epilepsy face challenges related to management of the disorder, its treatment, co-occurring depression, disability, social disadvantages, and stigma. Two national conferences on public health and epilepsy (1997, 2003) and a 2012 IOM report on the public health dimensions of epilepsy highlighted important knowledge gaps and emphasized the need for evidence-based, ...[more]

PMID: 28215372

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Project description:Background and objectivesPatients with CKD are asked to perform self-management tasks including dietary changes, adhering to medications, avoiding nephrotoxic drugs, and self-monitoring hypertension and diabetes. Given the effect of aging on functional capacity, self-management may be especially challenging for older patients. However, little is known about the specific challenges older adults face maintaining CKD self-management regimens.Design, setting, participants, & measurementsWe conducted an exploratory qualitative study designed to understand the relationship among factors facilitating or impeding CKD self-management in older adults. Six focus groups (n=30) were held in August and September of 2014 with veterans≥70 years old with moderate-to-severe CKD receiving nephrology care at the Atlanta Veterans Affairs Medical Center. Grounded theory with a constant comparative method was used to collect, code, and analyze data.ResultsParticipants had a mean age (range) of 75.1 (70.1-90.7) years, 60% were black, and 96.7% were men. The central organizing concept that emerged from these data were managing complexity. Participants typically did not have just one chronic condition, CKD, but a number of commonly co-occurring conditions. Recommendations for CKD self-management therefore occurred within a complex regimen of recommendations for managing other diseases. Participants identified overtly discordant treatment recommendations across chronic conditions (e.g., arthritis and CKD). Prioritization emerged as one effective strategy for managing complexity (e.g., focusing on BP control). Some patients arrived at the conclusion that they could group concordant recommendations to simplify their regimens (e.g., protein restriction for both gout and CKD).ConclusionsAmong older veterans with moderate-to-severe CKD, multimorbidity presents a major challenge for CKD self-management. Because virtually all older adults with CKD have multimorbidity, an integrated treatment approach that supports self-management across commonly occurring conditions may be necessary to meet the needs of these patients.

Project description:BackgroundComplex interventions such as self-management courses are difficult to evaluate due to the many interacting components. The way complex interventions are delivered can influence the effect they have for patients, and can impact the interpretation of outcomes of clinical trials. Implementation fidelity evaluates whether complex interventions are delivered according to protocol. Such assessments have been used for one-to-one psychological interventions; however, the science is still developing for group interventions.MethodsWe developed and tested an instrument to measure implementation fidelity of a two-day self-management course for people with epilepsy, SMILE(UK). Using audio recordings, we looked at adherence and competence of course facilitators. Adherence was assessed by checklists. Competence was measured by scoring group interaction, an overall impression score and facilitator "didacticism". To measure "didacticism", we developed a novel way to calculate facilitator speech using computer software. Using this new instrument, implementation fidelity of SMILE(UK) was assessed on three modules of the course, for 28% of all courses delivered.ResultsUsing the instrument for adherence, scores from two independent raters showed substantial agreement with weighted Kappa of 0.67 and high percent agreement of 81.2%. For didacticism, the results from both raters were highly correlated with an intraclass coefficient of 0.97 (p < 0.0001). We found that the courses were delivered with a good level of adherence (> 50% of scored items received the maximum of 2 points) and high competence. Groups were interactive (mean score: 1.9-2.0 out of 2) and the overall impression was on average assessed as "good". Didacticism varied from 42% to 93% of total module time and was not associated with the other competence scores.ConclusionThe instrument devised to measure implementation fidelity was reproducible and easy to use. The courses for the SMILE(UK) study were delivered with a good level of adherence to protocol while not compromising facilitator competence.Trial registrationISRCTN57937389 .

Dataset Information

The Managing Epilepsy Well Network:: Advancing Epilepsy Self-Management.

Publications

The Managing Epilepsy Well Network:: Advancing Epilepsy Self-Management.

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