Self-management practices associated with quality of life for adults with epilepsy.
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ABSTRACT:
SUBMITTER: Quon R
PROVIDER: S-EPMC6810849 | biostudies-literature | 2019 Nov
REPOSITORIES: biostudies-literature
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Self-management practices associated with quality of life for adults with epilepsy.
Quon Robert R Andrew Angeline A Schmidt Samantha S Escoffery Cam C Schommer Lindsay L Chu Felicia F Henninger Heidi H Nagle Keith K Streltzov Nicholas N Jobst Barbara B
Journal of neurology 20190814 11
Epilepsy self-management practices enhance a patient's competence and confidence in managing their chronic condition, which is assumed to lead to an improved quality of life (QoL). We analyzed the relationship between the Epilepsy Self-Management Scale (ESMS) responses and the Quality of Life in Epilepsy (QOLIE-31) scores. Baseline questionnaires from HOBSCOTCH, a self-management program for cognitive problems, were administered in four New England epilepsy centers on adults (n = 100) with epile ...[more]
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Project description:Background and objectivesWe 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.MethodsHOBSCOTCH 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.ResultsA 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.DiscussionThis 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 informationClinicalTrials.gov (NCT02394509).Classification of evidenceThis study provides Class III evidence that in-person HOBSCOTCH delivery improved subjective measures of cognition in persons with epilepsy.
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Project description: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.
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Project description:BACKGROUND:Food insecurity undermines a patient's ability to follow diabetes self-management recommendations. Care providers need strategies to direct their support of diabetes management among food insecure patients and families. OBJECTIVE:To identify what emerging practices health care providers can relay to patients or operationalize to best support diabetes self-management among food insecure adults and families. ELIGIBILITY CRITERIA:Food insecure populations with diabetes (type 1, type 2, prediabetes, gestational diabetes) and provided diabetes management practices specifically for food insecure populations. Only studies in English were considered. In total, 21 articles were reviewed. SOURCES OF EVIDENCE:Seven databases: Cumulative Index of Nursing and Allied Health Literature, Cochrane Database of Systematic Reviews, Medline, ProQuest Nursing & Allied Health Database, PsychInfo, Scopus, and Web of Science. RESULTS:Emerging practices identified through this review include screening for food insecurity as a first step, followed by tailoring nutrition counseling, preventing hypoglycemia through managing medications, referring patients to professional and community resources, building supportive care provider-patient relationships, developing constructive coping strategies, and decreasing tobacco smoking. CONCLUSION:Emerging practices identified in our review include screening for food insecurity, nutrition counselling, tailoring management plans through medication adjustments, referring to local resources, improving care provider-patient relationship, promoting healthy coping strategies, and decreasing tobacco use. These strategies can help care providers better support food insecure populations with diabetes. However, some strategies require further evaluation to enhance understanding of their benefits, particularly in food insecure individuals with gestational and prediabetes, as no studies were identified in these populations. A major limitation of this review is the lack of global representation considering no studies outside of North America satisfied our inclusion criteria, due in part to the English language restriction.
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