Self-Management education for adults with poorly controlled epILEpsy [SMILE (UK)]: a randomised controlled trial

Ridsdale, Leone; McKinlay, Alison; Wojewodka, Gabriella; Robinson, Emily; Mosweu, Iris; Feehan, Sarah J; Noble, Adam; Morgan, Myfanwy; Taylor, Stephanie J C; McCrone, Paul; Landau, Sabine; Richardson, Mark P.; Baker, Gus A.; Goldstein, Laura H.

doi:10.3310/hta22210

Cited by 26 publications

(29 citation statements)

References 167 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Purposive recruitment methods were used. The first author (AM) invited by mail 47 PWE from a previous randomised controlled trial [ 33 ] who agreed to be contacted about future research. Fifteen PWE responded to the invitation and were screened; eight of whom were eligible to participate.…”

Section: Methodsmentioning

confidence: 99%

Patient views on use of emergency and alternative care services for adult epilepsy: A qualitative study

McKinlay

Morgan

Noble

et al. 2020

Seizure

Self Cite

View full text Add to dashboard Cite

Highlights We interviewed highly informed people with epilepsy and their carers Participants usually preferred to avoid emergency services after a typical seizure They developed strategies to manage themselves without emergency services Improved communication between existing services will facilitate appropriate care Two alternative pathways were not viewed as replacements for emergency care

show abstract

Section: Methodsmentioning

confidence: 99%

Patient views on use of emergency and alternative care services for adult epilepsy: A qualitative study

McKinlay

Morgan

Noble

et al. 2020

Seizure

Self Cite

View full text Add to dashboard Cite

show abstract

“…The Modular Service Package Epilepsy study (MOSES) reported significant improvements in ASM tolerability, epilepsy knowledge, coping with epilepsy, and seizure frequency after 6 months following a 2-day SM education program [11]. Self-management education for people with poorly controlled epilepsy [SMILE (UK)] adapted MOSES for use in the United Kingdom and did not find the 2-day course to be effective in improving QOL or secondary outcome measures (anxiety and depression), after 12 months [12]. Though both MOSES and SMILE were randomized control trials (RCTs), MOSES included all adults with epilepsy whereas SMILE included only adults with chronic epilepsy who had two or more seizures in the prior 12 months.…”

Section: Introductionmentioning

confidence: 99%

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

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

“…In developed countries, the incidence rate ranges from 24 to 53 per 100,000 person-years. [12] Antiepileptic drugs (AEDs) can prevent seizures in approximately 70% of adult patients with epilepsy. [3] However, AEDs nonadherence is highly prevalent, with estimates ranging from 20% to 80%.…”

Section: Introductionmentioning

confidence: 99%

Factors affecting adherence to antiepileptic medications among Sudanese individuals with epilepsy: A cross-sectional survey

Elsayed

Badi

et al. 2019

J Family Med Prim Care

View full text Add to dashboard Cite

Background: Nonadherence to medication is widespread in epilepsy and other chronic diseases. Studies reporting adherence to antiepileptic medications are very limited in African countries. Adherence reports from low income African countries are few in contrast to multiple studies from high-income countries. Therefore, the aim of this study is to measure the level of adherence to antiepileptic medication in Sudanese population. Methods: A descriptive cross-sectional study of 96 individuals with epilepsy recruited from neurology outpatient clinics in three tertiary centers in Sudan. Data were collected by using a structured questionnaire containing Morisky Medication Adherence Scale-4 (MMAS-4) and Belief about Medication Questionnaire and analyzed by statistical package of social sciences. Results: About 35% of patients were estimated to be nonadherent. Most of the patients (93%) acknowledged their need for antiepileptic drugs. However, 35% had high concern score. Adherence is affected by attitude toward antiepileptic drugs (AEDs) and presence of side effects to AEDs. The relation between side effects and adherence was significant ( P value 0.000). Furthermore, there was a statistically insignificant relation between the number of drugs used and adherence ( P value 0.002). There was a significant relation between adherence, necessity mean score, concern mean score, and necessity concern differential P value 0.000 for all. Conclusion: Nonadherence to antiepileptic medication was reported in almost in one third of individuals in this cohort. There were statistically significant associations between nonadherence and both side effects and number of medications used in the treatment of epilepsy. Therefore, family physician should always check compliance with antiepileptic medication. Patient's education about adherence to medication through family physician may in part decrease the recurrence of epileptic seizures. Further research is needed to explore ways to increase adherence with AEDs in a low resource country like Sudan.

show abstract

Self-Management education for adults with poorly controlled epILEpsy [SMILE (UK)]: a randomised controlled trial

Abstract: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in ; Vol. 22, No. 21. See the NIHR Journals Library website for further project information.

Cited by 26 publications

References 167 publications

Patient views on use of emergency and alternative care services for adult epilepsy: A qualitative study

Patient views on use of emergency and alternative care services for adult epilepsy: A qualitative study

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

Factors affecting adherence to antiepileptic medications among Sudanese individuals with epilepsy: A cross-sectional survey

Contact Info

Product

Resources

About