Do Behavioural, Self-Management, and Service Delivery Models Improve Outcomes in Adults with Epilepsy?

Background

Epilepsy is a chronic neurological disorder characterized by recurrent seizures, affecting approximately 660 individuals per 100,000 globally. Although anti-seizure medications remain the cornerstone of management, one-third of patients fail to achieve adequate seizure control. For these individuals, novel care models—incorporating service delivery innovations, behavioural strategies, and self-management interventions—may address cognitive, psychological, and behavioural dimensions of epilepsy, potentially enhancing quality of life and clinical outcomes.

Study Design

This Cochrane systematic review included randomized controlled trials (RCTs) and quasi-RCTs, encompassing a variety of designs—parallel, crossover, and cluster trials—targeting adults and older adolescents with epilepsy. Literature searches across multiple databases, including the Cochrane Register of Studies and MEDLINE, were conducted up to 21 August 2023. Eligible interventions comprised:
– Behavioural and psycho-educational strategies
– Mind-body interventions
– Self-management programs
– Physical exercise interventions
– Nurse-led service delivery models
– Other service-based approaches

Primary outcome: seizure frequency.
Secondary outcomes: seizure severity, health-related quality of life (HRQoL), medication adherence, epilepsy-specific knowledge, general health, psychosocial function, and adverse events. Both short-term (≤6 months) and long-term (>6 months) effects were analysed, and evidence certainty was graded using GRADE.

Key Findings

Thirty-six studies involving 5834 participants met inclusion criteria. Participants varied from general epilepsy populations to subsets with drug-resistant epilepsy or comorbidities such as depression and learning disabilities.

Seizure Frequency

– **Psycho-behavioural interventions**: Two studies suggested a likely reduction in monthly seizure frequency at 3–6 months (mean reduction 4.42 seizures/month; moderate-certainty evidence). No immediate post-intervention benefit was observed.
– **Mind-body interventions**: Three studies showed small short-term reductions (mean decrease 3.28 seizures/month; low-certainty), but other data indicated no effect.
– **Self-management**: Mixed results. Some studies showed no short-term seizure reduction, while others demonstrated increased seizure freedom rates.
– **Physical exercise**: Short-term effect very uncertain.
– **Nurse-led service delivery**: One study found no effect on seizure frequency.
– No long-term seizure control data for mind-body, physical exercise, or nurse-led interventions.

Health-Related Quality of Life

– Psycho-behavioural: Likely no difference in QOLIE-10 scores at six months (moderate certainty).
– Mind-body: May result in no difference in QOLIE-31-P scores at six weeks (low certainty).
– Self-management: Probably no improvement in QOLIE-31 scores at six months, though slight improvement noted in QOLIE-10 scores from one study.
– Physical exercise: May result in no short-term HRQoL improvement.
– Nurse-led: Probably no HRQoL benefit short- or long-term.
– Service delivery models (non-nurse-led): One study showed possible long-term HRQoL improvement.

Other Outcomes

Evidence for benefits in epilepsy knowledge, medication adherence, and psychosocial functioning was sparse and inconsistent. No adverse events related to interventions were reported.

Expert Commentary

These findings indicate that while certain psycho-behavioural and self-management strategies show promise—particularly in mildly improving seizure control—evidence remains insufficient to recommend widespread adoption as replacements or primary adjuncts to pharmacotherapy. The heterogeneity of interventions, participant characteristics, and outcome measures limits generalizability. Future research should adopt standardized outcome measures, stratify participants by epilepsy subtype and severity, and extend follow-up to validate long-term efficacy.

Mechanistically, behavioural and self-management interventions may enhance seizure control by addressing stress, sleep hygiene, medication adherence, and cognitive reframing, all of which influence neuronal excitability. However, robust evidence of sustained clinical benefit is lacking.

Conclusion

Current evidence offers no high-certainty support that behavioural, self-management, or service delivery interventions improve seizure control or HRQoL in adults with epilepsy. However, selected psycho-behavioural approaches may confer short-term benefits. Given the high global burden of uncontrolled epilepsy, carefully designed trials with adequate power, rigorous methodology, and validated patient-centred outcomes remain a priority.

Funding and ClinicalTrials.gov

This work references Huang Y, Nevitt SJ, Mayer J, et al. Service delivery, behavioural, and self-management interventions for adults with epilepsy. Cochrane Database Syst Rev. 2025 Sep 24;9(9):CD015284. doi: 10.1002/14651858.CD015284.pub2.