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Meta-Analysis
. 2022 Apr 27;4(4):CD006245.
doi: 10.1002/14651858.CD006245.pub5.

Care delivery and self-management strategies for children with epilepsy

Nigel Fleeman  1 , Peter M Bradley  2 , Mariangela Panebianco  3 , Anika Sharma  4
Affiliations
Meta-Analysis

Care delivery and self-management strategies for children with epilepsy

Nigel Fleeman et al. Cochrane Database Syst Rev. .

Abstract

Background: Epilepsy is a neurological disorder affecting both children and adults. Epileptic seizures are the result of excessive and abnormal cortical cell electrical activity in the brain. In response to criticism that epilepsy care for children has little impact on long-term outcomes, healthcare professionals and administrators have developed various service models and strategies to address perceived inadequacies. This is an updated version of a Cochrane Review previously published in 2018.

Objectives: To assess the effects of any specialised or dedicated intervention for epilepsy versus usual care in children and adolescents with epilepsy and their families.

Search methods: We searched the following databases on 14 January 2020: the Cochrane Register of Studies (CRS Web), MEDLINE (Ovid, 1946 to 13 January 2020), PsycINFO (1887 to 14 January 2020), CINAHL Plus (1937 to 14 January 2020), ClinicalTrials.gov, and the World Health Organization International Clinical Trials Registry Platform. The Cochrane Register of Studies (CRS Web) includes the Cochrane Epilepsy Group Specialised Register and the Cochrane Central Register of Controlled Trials (CENTRAL). We also contacted experts in the field seeking information on unpublished and ongoing studies and checked the websites of epilepsy organisations and the reference lists of included studies.

Selection criteria: We included randomised controlled trials recruiting children and adolescents with epilepsy.

Data collection and analysis: Two review authors independently selected trials for inclusion and extracted the relevant data. We assessed the following outcomes: 1. Seizure frequency and severity; 2. Appropriateness and volume of medication prescribed (including evidence of drug toxicity); 3. Participants' reported knowledge of information and advice received from professionals; 4. Participants' reports of health and quality of life; 5. Objective measures of general health status; 6. Objective measures of social or psychological functioning (including the number of days spent on sick leave/absence from school or work, and employment status); and 7. Costs of care or treatment. The results of the data extraction and quality assessment for each study were presented in structured tables and as a narrative summary. All summary statistics were extracted for each outcome.

Main results: We included nine studies of eight interventions in the review, reporting on seven distinct self-management programmes for educating or counselling children with epilepsy and their parents, and one new model of care. Based largely on self-reported outcomes, each programme showed some benefits for the well-being of children with epilepsy; however, all of the included studies had methodological flaws. No single programme was evaluated with different study samples, and in no instance was the same outcome measured and reported in the same way across studies, precluding any possible meta-analysis, even if the interventions were considered sufficiently similar to include in meta-analysis. We chose the outcomes for which data might be important for decisions about the interventions as per guidance in the Cochrane Handbook for Systematic Reviews of Interventions. We found moderate certainty evidence that one of the educational interventions reduced seizure frequency. There was low certainty evidence that two other educational interventions reduced seizure severity, seizure control, and seizure cure rates. The evidence for all other outcomes (drug adherence, knowledge, self-efficacy and self-perception of epilepsy on quality of life) was mixed.

Authors' conclusions: Whilst each of the programmes evaluated in this review showed some benefit to children with epilepsy, their impact was extremely variable. No programme showed benefits across the full range of outcomes, and all studies had methodological problems. There is currently insufficient evidence in favour of any single programme. Further evidence from randomised controlled trials using validated measures and considering clinical meaningfulness as well as statistical significance of results is required.

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Conflict of interest statement

NF: none known.

PB: none known.

MP: none known.

AS: none known.

Figures

1
1
Study flow diagram (illustrating results from previous versions of the review as well as this update).
2
2
Risk of bias graph: review authors' judgements about each risk of bias item presented as percentages across all included studies.
3
3
Risk of bias summary: review authors' judgements about each risk of bias item for each included study.
1.1
1.1. Analysis
Comparison 1: Seizure frequency and severity, Outcome 1: Number of seizures at 12 months
1.2
1.2. Analysis
Comparison 1: Seizure frequency and severity, Outcome 2: Seizure severity (frequency and duration of seizures) improved at 12 months
1.3
1.3. Analysis
Comparison 1: Seizure frequency and severity, Outcome 3: Seizure control rate at 12 months
1.4
1.4. Analysis
Comparison 1: Seizure frequency and severity, Outcome 4: Seizure cure rate at 12 months
2.1
2.1. Analysis
Comparison 2: Appropriateness and volume of medication prescribed, Outcome 1: Drug adherence improved using the 8‐item Morisky Medication Adherence Scale (MMAS‐8) at 3 months
2.2
2.2. Analysis
Comparison 2: Appropriateness and volume of medication prescribed, Outcome 2: Mean adherence to medication using the 8‐item Morisky Medication Adherence Scale (MMAS‐8) at 3 months
2.3
2.3. Analysis
Comparison 2: Appropriateness and volume of medication prescribed, Outcome 3: Antiepileptic drug adherence measured using the Medication Event Monitoring System (MEMS) 6 Cap at 3 months
3.1
3.1. Analysis
Comparison 3: Knowledge of information and advice received from professionals, Outcome 1: Medical and social knowledge (Epilepsy Knowledge Profile‐General (EKP‐G)) at 3 months
3.2
3.2. Analysis
Comparison 3: Knowledge of information and advice received from professionals, Outcome 2: Knowledge of epilepsy (Epilepsy Self Knowledge Test for Children (EKTC)) at 3 months
3.3
3.3. Analysis
Comparison 3: Knowledge of information and advice received from professionals, Outcome 3: Parents’ disease and treatment knowledge (Pediatric Epilepsy Medication Self‐Management Questionnaire (PEMSQ) ‐ Epilepsy and Treatment Knowledge and Expectations) at 3 months
3.4
3.4. Analysis
Comparison 3: Knowledge of information and advice received from professionals, Outcome 4: Parents’ knowledge (Epilepsy Knowledge Questionnaire (EKQ)) at 3 months
3.5
3.5. Analysis
Comparison 3: Knowledge of information and advice received from professionals, Outcome 5: Epilepsy Knowledge Scale for Parents (EKSP) at 3 months
4.1
4.1. Analysis
Comparison 4: Health and quality of life, Outcome 1: Mean Seizure Self‐Efficacy Scale for Children (SSES‐C) score at 3 months
4.2
4.2. Analysis
Comparison 4: Health and quality of life, Outcome 2: Self‐perception of epilepsy on quality of life (Pediatric Quality of Life Inventory (PedsQL)) at 3 months
4.3
4.3. Analysis
Comparison 4: Health and quality of life, Outcome 3: Quality of Life in Epilepsy Inventory (QOLIE‐48) at 3 months
4.4
4.4. Analysis
Comparison 4: Health and quality of life, Outcome 4: Mean self‐efficacy (Epilepsy Self‐Efficacy Scale (ESES)) at 3 months
4.5
4.5. Analysis
Comparison 4: Health and quality of life, Outcome 5: Social problem‐solving (Social Problem‐Solving Inventory‐Revised (SPSI‐R)) at 3 months
4.6
4.6. Analysis
Comparison 4: Health and quality of life, Outcome 6: Self‐perception of physical, emotional, social and school functioning (Glasgow Epilepsy Outcome Scale for Young Persons (GEOS‐YP)) at 3 months
4.7
4.7. Analysis
Comparison 4: Health and quality of life, Outcome 7: Perceived competencies for control: Harter's  adjusted 5‐month scores
4.8
4.8. Analysis
Comparison 4: Health and quality of life, Outcome 8: Parents’ Anxiety About Seizures Scale (PAASS) at 3 months
4.9
4.9. Analysis
Comparison 4: Health and quality of life, Outcome 9: Parents’ self‐management (Pediatric Epilepsy Medication Self‐Management Questionnaire (PEMSQ) ‐ Total) at 3 months
4.10
4.10. Analysis
Comparison 4: Health and quality of life, Outcome 10: Parent Response to Child Illness (PRCI) at 3 months
4.11
4.11. Analysis
Comparison 4: Health and quality of life, Outcome 11: Taylor Manifest Anxiety Scale
5.1
5.1. Analysis
Comparison 5: Objective measures of general health status, Outcome 1: Emergency visits at 12 months
5.2
5.2. Analysis
Comparison 5: Objective measures of general health status, Outcome 2: Regular medical visits at 12 months
6.1
6.1. Analysis
Comparison 6: Objective measures of social or psychological functioning, Outcome 1: Mean number of absences per 100 school days
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References

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References to other published versions of this review

Fleeman 2015
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