Self-management for people with poorly controlled epilepsy: Participants' views of the UK Self-Management in epILEpsy (SMILE) program

Laybourne, Anne; Morgan, Myfanwy; Watkins, Sarah; Lawton, Rebecca; Ridsdale, Leone

doi:10.1016/j.yebeh.2015.08.023

Cited by 23 publications

(36 citation statements)

References 25 publications

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“…It is noteworthy that the SMILE authors performed in-depth interviews with participants of the SMILE study and concluded, "A brief group self-management intervention increased knowledge and confidence in managing epilepsy." 4,5 In accordance with the MOSES RCT, the SMILE RCT did not find effects on quality of life. The MOSES study used a generic quality of life instrument (Short-Form Health Survey-36).…”

Section: Are Suitable?mentioning

confidence: 55%

Comment on: The effectiveness of a group self‐management education course for adults with poorly controlled epilepsy, SMILE (UK): A randomized controlled trial

May

Thorbecke

Denning³

et al. 2018

Epilepsia

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Section: Are Suitable?mentioning

confidence: 55%

Comment on: The effectiveness of a group self‐management education course for adults with poorly controlled epilepsy, SMILE (UK): A randomized controlled trial

May

Thorbecke

Denning³

et al. 2018

Epilepsia

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“…Carers were also included if participants required help with travel and assistance during the course days. The course was piloted with volunteers prior to beginning the trial [29]. …”

Section: Methodsmentioning

confidence: 99%

“…Of the nine modules, the first eight were identified. The number of modules whose delivery was to be rated was then further reduced after referring to qualitative interviews conducted with participants attending pilot SMILE(UK) courses [29]. The volunteer participants identified Module 3: Basic Knowledge , Module 4: Diagnosis and Module 6: Self-Control as particularly useful.…”

Section: Methodsmentioning

confidence: 99%

Implementation fidelity of a self-management course for epilepsy: method and assessment

Wojewodka

Hurley

Taylor

et al. 2017

BMC Med Res Methodol

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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 registration ISRCTN57937389.Electronic supplementary materialThe online version of this article (doi:10.1186/s12874-017-0373-x) contains supplementary material, which is available to authorized users.

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“…Eighteen 2-day courses were delivered and the mean group size was 8 (range [5][6][7][8][9][10][11][12][13][14]. The course was divided into 4 half-day sessions, with 61.5% of participants attending all sessions, 12.3% attending 1-3, and 26% attending none (Table S2).…”

Section: Intervention Delivery and Receipt And Retention Of Particmentioning

confidence: 99%

“…German MOSES leaders trained UK Epilepsy Nurse Specialists and electroencephalography (EEG) technicians to deliver the course. We also undertook an external pilot with volunteers to test the feasibility and acceptability of delivering SMILE (UK) in the context of the National Health Service (NHS) . This paper addresses the question: for people with poorly controlled epilepsy, does the SMILE (UK) self‐management course improve quality of life?…”

Section: Introductionmentioning

confidence: 99%

The effectiveness of a group self‐management education course for adults with poorly controlled epilepsy, SMILE (UK): A randomized controlled trial

et al. 2018

Self Cite

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SummaryObjectiveEpilepsy is one of the most common neurological conditions affecting about 1% of adults. Up to 40% of people with epilepsy (PWE) report recurring seizures while on medication. And optimal functioning requires good self‐management. Our objective was to evaluate a group self‐management education courses for people with epilepsy and drug‐resistant seizures by means of a multicenter, pragmatic, parallel group, randomized controlled trial.MethodsWe recruited adults with epilepsy, having ≥2 seizures in the prior 12 months, from specialist clinics. Consenting participants were randomized 1:1 to a group course or treatment as usual. The primary outcome measure was quality of life 12 months after randomization using Quality of Life 31‐P (QOLIE‐31‐P). Secondary outcome measures were seizure frequency and recency, psychological distress, impact and stigma of epilepsy, self‐mastery, medication adherence, and adverse effects. Analysis of outcomes followed the intention‐to‐treat principle using mixed‐effects regression models.ResultsWe enrolled 404 participants (intervention: n = 205, control: n = 199) with 331 (82%) completing 12‐month follow‐up (intervention: n = 163, control: n = 168). Mean age was 41.7 years, ranging from 16 to 85, 54% were female and 75% were white. From the intervention arm, 73.7% attended all or some of the course. At 12‐month follow‐up, there were no statistically significant differences between trial arms in QOLIE‐31‐P (intervention mean: 67.4, standard deviation [SD]: 13.5; control mean: 69.5, SD 14.8) or in secondary outcome measures.SignificanceThis is the first pragmatic trial of group education for people with poorly controlled epilepsy. Recruitment, course attendance, and follow‐up rates were higher than expected. The results show that the primary outcome and quality of life did not differ between the trial arms after 12 months. We found a high prevalence of felt‐stigma and psychological distress in this group of people with drug‐resistant seizures. To address this, social and psychological interventions require evaluation, and may be necessary before or alongside self‐management‐education courses.

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Self-management for people with poorly controlled epilepsy: Participants' views of the UK Self-Management in epILEpsy (SMILE) program

Abstract: A brief group self-management intervention increased knowledge and confidence in managing epilepsy.

Cited by 23 publications

References 25 publications

Comment on: The effectiveness of a group self‐management education course for adults with poorly controlled epilepsy, SMILE (UK): A randomized controlled trial

Comment on: The effectiveness of a group self‐management education course for adults with poorly controlled epilepsy, SMILE (UK): A randomized controlled trial

Implementation fidelity of a self-management course for epilepsy: method and assessment

The effectiveness of a group self‐management education course for adults with poorly controlled epilepsy, SMILE (UK): A randomized controlled trial

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