Self-management skills and behaviors, self-efficacy, and quality of life in people with epilepsy from underserved populations

Pandey, Dilip K.; Levy, Jessica; Serafini, Anna; Habibi, Mitra; Song, Woo‐Jin; Shafer, Patricia Osborne; Loeb, Jeffrey A.

doi:10.1016/j.yebeh.2019.07.042

Cited by 26 publications

(15 citation statements)

References 35 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Local Epilepsy Foundation center case managers have commented that, in their experience, a much higher proportion of PWE than the reported two-thirds have never accessed web-based resources (reported earlier and here) [19]. The PAUSE staff have reported that many PWE have a need for this personalized approach to improve their knowledge of epilepsy.…”

Section: There Is a Greater Need For Further Epilepsy Sm Education Inmentioning

confidence: 65%

“…This program uses publicly available education information from the Epilepsy Foundation (EF) website, epilepsy.com, linked to a mobile technology-based PAUSE application to provide patient-centered personalized epilepsy SM lesson plan to PWE. Detailed information about PAUSE including study design, recruitment, intervention, and assessments has been published previously [19,20]. We reported significantly lower epilepsy SM practices and behaviors among PWE from an underserved population as compared to all PWE.…”

Section: Introductionmentioning

confidence: 64%

“…If more than one item was missing, the score became invalid and was not included in the data analysis. The details of the QOLIE-10 and QOLIE-10-P imputation method are provided in an earlier publication [19].…”

Section: Discussionmentioning

confidence: 99%

“…Detailed information on all measures used during the PAUSE study was previously published [19]. Table 2 summarizes all PAUSE measures and scoring.…”

Section: Methodsmentioning

confidence: 99%

“…Participants completed QOLIE-10-P questionnaires at all time points. We have described QOLIE-10P in our previous publication [19].…”

Section: Quality Of Lifementioning

confidence: 99%

See 4 more Smart Citations

Enhancing epilepsy self-management and quality of life for adults with epilepsy with varying social and educational backgrounds using PAUSE to Learn Your Epilepsy

Pandey

Dasgupta

Levy

et al. 2020

Epilepsy & Behavior

Self Cite

View full text Add to dashboard Cite

People with epilepsy (PWE) come from a wide variety of social backgrounds and educational skillsets, making self-management (SM) education for improving their condition challenging. Here, we evaluated whether a mobile technology-based personalized epilepsy SM education intervention, PAUSE to Learn Your Epilepsy (PAUSE), improves SM measures such as self-efficacy, epilepsy SM behaviors, epilepsy outcome expectations, quality of life (QOL), and personal impact of epilepsy in adults with epilepsy. Methods: Recruitment for the PAUSE study occurred from October 2015 to March 2019. Ninety-one PWE were educated using an Internet-enabled computer tablet application that downloads custom, patient-specific educational programs from Epilepsy.com. Validated self-reported questionnaires were used for outcome measures. Participants were assessed at baseline (T0), the first follow-up at completion of the PWE-paced 8-12-week SM education intervention (T1), and the second follow-up at least 3 months after the first follow-up (T2). Multiple linear regression was used to assess within-subject significant changes in outcome measures between these time points. Results: The study population was diverse and included individuals with a wide variety of SM educational needs and abilities. The median time for the first follow-up assessment (T1) was approximately 4 months following the baseline (T0) and 8 months following baseline for the second follow-up assessment (T2). Participants showed significant improvement in all SM behaviors, self-efficacy, outcome expectancy, QOL, and personal impact of epilepsy measures from T0 to T1. Participants who scored lower at baseline tended to show greater improvement at T1. Similarly, results showed that participant improvement was sustained in the majority of SM measures from T1 to T2. Conclusion: This study demonstrated that a mobile technology-based personalized SM intervention is feasible to implement. The results provide evidence that epilepsy SM behavior and practices, QOL, outcome expectation for epilepsy treatment and management, self-efficacy, and outcome expectation and impact of epilepsy significantly improve following a personalized SM education intervention. This underscores a greater need for a pragmatic trial to test the effectiveness of personalized SM education, such as PAUSE to Learn Your Epilepsy, in broader settings specifically for the unique needs of the hard-to-reach and hard-to-treat population of PWE.

show abstract

Section: There Is a Greater Need For Further Epilepsy Sm Education Inmentioning

confidence: 65%

Section: Introductionmentioning

confidence: 64%

Section: Discussionmentioning

confidence: 99%

“…Detailed information on all measures used during the PAUSE study was previously published [19]. Table 2 summarizes all PAUSE measures and scoring.…”

Section: Methodsmentioning

confidence: 99%

“…Participants completed QOLIE-10-P questionnaires at all time points. We have described QOLIE-10P in our previous publication [19].…”

Section: Quality Of Lifementioning

confidence: 99%

See 3 more Smart Citations

Enhancing epilepsy self-management and quality of life for adults with epilepsy with varying social and educational backgrounds using PAUSE to Learn Your Epilepsy

Pandey

Dasgupta

Levy

et al. 2020

Epilepsy & Behavior

Self Cite

View full text Add to dashboard Cite

show abstract

Informing Digital Programs for Lupus Self‐Management Education: A Systematic Scoping Review

Carpenter,

Gilman,

French

et al. 2024

Arthritis Care & Research

View full text Add to dashboard Cite

ObjectiveWe describe the characteristics, content, and effectiveness of digital self‐management (SM) education programs for lupus and other chronic conditions to identify gaps and inform the improvement of future programs in lupus.MethodsThree bibliographic databases were searched for articles published between May 2012 and April 2022. The search was cast to capture the breadth of digital SM education programs in the following conditions: lupus, epilepsy, fibromyalgia, multiple sclerosis, sickle cell anemia, Sjogren's syndrome, psoriatic arthritis, and rheumatoid arthritis. Title and abstract screening, as well as full‐text review, was conducted by two independent reviewers. Data extraction was first completed by one author charting all studies and then, a second time, by four members of the research team charting collaboratively.ResultsOf the 1,969 articles identified through the search, 14 met inclusion criteria. Two additional articles were included following bibliography review. The 16 articles represented 12 unique digital SM education programs. Programs covered five conditions: epilepsy (n=3), fibromyalgia (n=2), multiple sclerosis (n=4), lupus (n=1), and rheumatoid arthritis (n=2). Most programs were asynchronous and internet‐based (n=9) with a prescribed sequence of content (n=8). Peer, technical, or specialist support was offered in seven programs. Most programs demonstrated statistically significant improvement of symptoms in the intervention group (n=8).ConclusionThis scoping review summarizes the current landscape for digital SM education programs in lupus and similar conditions. In lupus, further investigation will fill in the gaps around digital SM education needs, user experience and evaluation of outcomes.

show abstract

An online tool for information to women with epilepsy and therapeutic drug monitoring in pregnancy: Design and pilot study

et al. 2021

View full text Add to dashboard Cite

show abstract

Self-management skills and behaviors, self-efficacy, and quality of life in people with epilepsy from underserved populations

Cited by 26 publications

References 35 publications

Enhancing epilepsy self-management and quality of life for adults with epilepsy with varying social and educational backgrounds using PAUSE to Learn Your Epilepsy

Enhancing epilepsy self-management and quality of life for adults with epilepsy with varying social and educational backgrounds using PAUSE to Learn Your Epilepsy

Informing Digital Programs for Lupus Self‐Management Education: A Systematic Scoping Review

An online tool for information to women with epilepsy and therapeutic drug monitoring in pregnancy: Design and pilot study

Contact Info

Product

Resources

About