Self-management education for adults with poorly controlled epilepsy

Conditions

Epilepsy/Neurology Nervous System Diseases Epilepsy

Ridsdale L, McKinlay A, Wojewodka G, Robinson EJ, Mosweu I, Feehan SJ, Noble AJ, Morgan M, Taylor SJ, McCrone P, Landau S, Richardson M, Baker G, Goldstein LH.

2018-04-0125 citations

10.3310/hta22210

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

Wojewodka G, Hurley S, Taylor SJC, Noble AJ, Ridsdale L, Goldstein LH.

2017-07-116 citations

10.1186/s12874-017-0373-x

Self-management education for adults with poorly controlled epilepsy (SMILE (UK)): statistical, economic and qualitative analysis plan for a randomised controlled trial

Nicholas Magill, Leone Ridsdale, Laura H. Goldstein, Paul McCrone, Myfanwy Morgan et al. (10 authors)

Trials2015-06-1119 citations

10.1186/s13063-015-0788-9

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

Kralj-Hans I, Goldstein LH, Noble AJ, Landau S, Magill N, McCrone P, Baker G, Morgan M, Richardson M, Taylor S, Ridsdale L.

2014-04-0327 citations

10.1186/1471-2377-14-69

Interventions

Following optimisation for UK delivery, a single-blind RCT will compare effect of MOSES (plus treatment as usual TAU) to TAU alone. Active treatment MOSES: We shall run ~21 MOSES courses for those ra

ii) Epidemiology: Prevalence and age-related incidence of epilepsy

iii) Basic knowledge: Causes, pathophysiology, types of seizures

iv) Diagnosis: Important diagnostic tools. Importance of exact descriptions and documentation of seizures for the doctor

v) Treatment: Various treatment possibilities, guidelines and approaches with AEDs, importance of AED compliance to achieve better seizure control

vi) Self-control: How to influence and prevent the occurrence of epileptic seizures

recognition and avoidance of provoking factors

vii) Prognosis:

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: 1. Patient has a documented diagnosis of epilepsy (all epilepsy syndromes and all types of focal and generalised seizures will be permitted 2. Currently being prescribed antiepileptic drugs 3. Aged =16 years (no upper age limit) 4. Able to provide informed consent, participate in the workshops and complete the questionnaires in English 5. Had at least 2 seizures in previous 12 months (as reported by patient)

Exclusion criteria

Exclusion criteria: 1. Have actual/suspected psychogenic nonepileptic seizures only 2. Have acute symptomatic seizures related to acute neurological illness or substance misuse 3. Has a severe psychiatric disorders (e.g., psychosis) or terminal medical condition 4. Are enrolled in other nonpharmacological epilepsy treatment studies

Design outcomes

Primary

Measure	Time frame
The primary outcome measure for this project is quality of life (QOL) measured at 12 month follow-up in this project's randomised controlled trial (Phase 2 of the project). QoL will be measured using a standardised and psychometrically robust epilepsy-specific measure, called the QOLIE31 (Cramer et al., 1998). The QOLIE31 comprises seven subscales seizure worry, emotional wellbeing, energy fatigue, cognitive functioning, medication effects, social functioning, overall QOL. This measure is to be completed at assessments 1 (baseline), 2 (6 month follow-up) and 3 (12 month follow-up).	—

Measure

Time frame

The primary outcome measure for this project is quality of life (QOL) measured at 12 month follow-up in this project's randomised controlled trial (Phase 2 of the project). QoL will be measured using a standardised and psychometrically robust epilepsy-specific measure, called the QOLIE31 (Cramer et al., 1998). The QOLIE31 comprises seven subscales seizure worry, emotional wellbeing, energy fatigue, cognitive functioning, medication effects, social functioning, overall QOL. This measure is to be completed at assessments 1 (baseline), 2 (6 month follow-up) and 3 (12 month follow-up).

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Secondary

Measure	Time frame
The secondary outcome measures are the following which will be completed as part of the project's randomised controlled trial component (Phase 2 of the project): 1. Seizure control (seizure frequency over the previous 6/12 months and seizure recency through reports of time since last seizure; Thapar et al., 2009). This measure is to be completed at assessments 1, 2 and 3 2. Impact (Impact Scale measuring self-perceived impact of epilepsy on relationships, social and occupational activities, personal health and aspirations, and standard of living; Jacoby et al., 1993). This measure is to be completed at assessments 1, 2 and 3 3. Medication adherence (medication adherence subscale from the Epilepsy Self management Scale; Dilorio et al., 2009). To be completed at assessments 1 and 3 only 4. Medication adverse effects (during the past 4 weeks, how much have you been bothered by (a) physical effects of antiepileptic medication and (b) mental effects of antiepileptic medication?; Cramer et al., 1998). To be completed at assessments 1 and 3 only 5. Psychological distress (Hospital Anxiety and Depression Scale; Zigmond & Snaith, 1983). To be completed at assessments 1 and 3 only 6. Perceived stigma (Stigma of Epilepsy Scale; Jacoby, 1994). To be completed at assessments 1 and 3 only 7. Mastery/control over epilepsy(epilepsy specific scale; Wagner et al., 1995). To be completed at assessments 1 and 3 only 8. To permit an assessment of the cost effectiveness of the intervention, participants will report their use of different health services and work status over the prior 6months (Modified Client Service Receipt Inventory; Beecham over the prior 6months (Modified Client Service Receipt Inventory; Beecham & Knapp, 2001) and to complete the EuroQoL health status measure (EQ5D; The EuroQol Group, 1990). To be completed at assessments 1 and 3 only	—

Measure

Time frame

The secondary outcome measures are the following which will be completed as part of the project's randomised controlled trial component (Phase 2 of the project): 1. Seizure control (seizure frequency over the previous 6/12 months and seizure recency through reports of time since last seizure; Thapar et al., 2009). This measure is to be completed at assessments 1, 2 and 3 2. Impact (Impact Scale measuring self-perceived impact of epilepsy on relationships, social and occupational activities, personal health and aspirations, and standard of living; Jacoby et al., 1993). This measure is to be completed at assessments 1, 2 and 3 3. Medication adherence (medication adherence subscale from the Epilepsy Self management Scale; Dilorio et al., 2009). To be completed at assessments 1 and 3 only 4. Medication adverse effects (during the past 4 weeks, how much have you been bothered by (a) physical effects of antiepileptic medication and (b) mental effects of antiepileptic medication?; Cramer et al., 1998). To be completed at assessments 1 and 3 only 5. Psychological distress (Hospital Anxiety and Depression Scale; Zigmond & Snaith, 1983). To be completed at assessments 1 and 3 only 6. Perceived stigma (Stigma of Epilepsy Scale; Jacoby, 1994). To be completed at assessments 1 and 3 only 7. Mastery/control over epilepsy(epilepsy specific scale; Wagner et al., 1995). To be completed at assessments 1 and 3 only 8. To permit an assessment of the cost effectiveness of the intervention, participants will report their use of different health services and work status over the prior 6months (Modified Client Service Receipt Inventory; Beecham over the prior 6months (Modified Client Service Receipt Inventory; Beecham & Knapp, 2001) and to complete the EuroQoL health status measure (EQ5D; The EuroQol Group, 1990). To be completed at assessments 1 and 3 only

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Countries

United Kingdom

Outcome results

None listed