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Table 1 Summary of included papers

From: A systematic review and narrative synthesis of group self-management interventions for adults with epilepsy

Author Participants Intervention (int.) Facilitator Control Outcome measures Main findings
Aliasgharpour et al. [33] 60 PWE randomised
Aged 18–70
Diagnosed for ≥1 yr.
Experienced seizures in the past year
1 month educational int.
Four 2 hr sessions
Face-to-face lectures with case histories, demonstrations and information leaflets to take away
Group size: 4–6. Discrete intervention
Master’s student in nursing TAU ESMS
Pre-intervention and 1 month follow-up
Self-management score significantly improved in int. vs control
Au et al. [37] 17 adults with
epilepsy (age range not specified)
≥ 2 seizures a month
8 week psychological CBT int.
Eight 2 hr structured sessions
Group size: 8
Discrete intervention
2 clinical psychologists trained in seizure management TAU QOLIE-31, ESES, seizure frequency
3 months pre-int. and
3 month follow-up
Significant improvement in QoL and self-efficacy scores in intervention group vs control
No difference in seizure frequency
Fraser et al. [35] 83 PWE randomised
Age ≥ 18
Diagnosed for ≥6 months
8 week psychoeducational int.
Eight 75 min sessions
Presentations, facilitated discussion and workbook
Group size: 6–8. Discrete int.
Rehabilitation psychologist and trained peer mentor WC QOLIE-31, ESMS, ESES,
PHQ-9, GAD-7
Pre-int., 8 week and 6 month follow-up
QoL, self-efficacy and PHQ-9 scores improved at 8 weeks in int. group but not significant at 6 months.
Self-management significantly improved at 6 months
Helde et al. [29] 111 PWE aged 16–70
Diagnosed for ≥1 yr.
≥ 1 seizure in the past yr
1 day educational int.
Information and discussion about epilepsy and psychosocial aspects
Group size: 5–11
Additional input: telephone follow-up and 1–1 counselling from nurse
MDT (the study nurse, neurologist, social worker, and neurophysiologist) TAU QOLIE-89 and general patient satisfaction score
Pre-randomisation and at
2 year follow-up
Significant improvement in QoL score in int. group at follow-up but no sig difference between int. and control
Significant increase in satisfaction in int. vs control
Ibinda et al. [34] 738 PWE randomised
581 data analysed
≥ 1 seizure in the past yr
1 day educational int.
Information about epilepsy provided using role play, discussion, narratives and brochure on the topics was given
Group size: up to 20. Discrete int.
Non-specific ‘researchers
and field staff’
WC AED adherence, seizure frequency, KEBAS
(Kilifi epilepsy beliefs and
Attitudes scores)
Pre-int. and after 1 year follow-up
Significantly improved KEBAS scores in int. vs control at follow-up.
No difference in adherence or seizure frequency between the groups (both improved significantly)
Losada-Comacho et al. [28] 182 women with
epilepsy randomised
Age ≥ 18
Diagnosed ≥1 yr.
≥ 1 seizure in the past 3 yrs
Educational int. part of pharmaceutical care programme
Monthly lectures and information brochures
Group size: not specified
Additional input: 1–1 medication reviews. Given adherence aids and seizure journals
Pharmacist trained in epilepsy management TAU and seizure
Information brochure
QOLIE-31, seizure frequency, adverse events,CES-D
(depression), Haynes-Sackett and Morinski-Green tests (medication adherence)
Pre-int. and after 6 month follow-up
Highly significant improvement in QoL score between int. and control groups at follow-up.
Other outcomes not reported in the paper
Lundgren et al. [30] 27 PWE randomised Aged 21–55 ≥ 4 seizures in the past 3 months Psychological ACT int.
Two 3 hr sessions
Group size: 6–8
Additional input: Two individual 90 min sessions, individualised seizure control techniques
2 clinical psychologists Supportive therapy WHOQOL-BREF, SWLS, seizure index
Pre-int, post-int, and at 6 month and 1 year follow-up
Significant improvement in seizure index at all time points post-int. in int. group vs control. Significant improvement in QoL scores in int. group after 1 year
May and Pfafflin, [15] 383 PWE randomised
Age ≥ 16
Any duration or severity of epilepsy
2 day educational int.
Interactive course with 9 modules aiming to improve knowledge of epilepsy and psychosocial factors
Group size: not specified. Discrete int.
Non-specific ‘trainers’ TAU SF-36, Depression Scale D-S′, Rosenberg self-esteem, stigma, restrictions due to epilepsy, epilepsy-related fears and mobility and leisure scales, specifically developed epilepsy knowledge and coping with epilepsy scales. Seizure frequency Pre-int. and 6 month follow-up Significant improvement in knowledge and coping scales (specifically developed) in int. group.
Significant improvement in seizure frequency in int. group.
No impact on QoL (SF-36 score)
McLaughlin and McFarland, [32] 37 older adults with epilepsy
Age ≥ 60
6 week psychological CBT int.
Six 2 h sessions
Spector et al. protocol, modified for older adults with less content and diaries to aid memory
Group size: 6–7. Discrete int.
Psychologist with epilepsy expertise Relaxation training GDS, CIDI-auto, WPSI, seizure frequency
Pre-int, post-int. and after 3 month follow-up
Significant improvement in seizure frequency in int. group vs control.
No significant difference between groups in other measures but depression and psychosocial functioning improved in both.
Olley et al. [36] 30 PWE allocated to groups
Aged 21–65
2 day psychoeducational int.
Educational sessions and group discussion on epilepsy, stigma & management
Group size: not specified. Discrete int.
Non-specific ‘researcher/therapist’ WC CCEI, BDI (psychological symptoms), knowledge about epilepsy
Pre-int, post-int and after 2 month follow-up
Significant improvement in int. group vs control in psychological scales and increased knowledge about epilepsy at follow-up
Pramuka et al. [31] 55 PWE randomised
Age ≥ 18
6 week psychoeducational int.
Six 2 hr sessions
Presentations, activities and discussion on medical and self-management topics
Written information provided
Group size: 4–12. Discrete int.
2 psychologists and 1 research associate
Guest lecture by nurse specialist
TAU QOLIE-89, ESES, WPSI (psycho-social factors), locus of control scale, MCMI-III (depression)
Pre-int. and 1 month follow-up
Trends in improved direction in all measures, but only one QoL subscale showed significant improvement in int. group vs control at follow-up.
  1. PWE people with epilepsy; yr. year; int intervention; hr. hour; TAU treatment as usual; ESMS Epilepsy Self-Management Scale; CBT Cognitive Behaviour Therapy; QOLIE Quality of Life in Epilepsy; ESES Epilepsy Self-Efficacy Scale; QoL Quality of Life; WCwaitlist control; PHQ-9 Patient Health Questionnaire-9; GAD-7 Generalised Anxiety Disorder-7; MDT multidisciplinary team; ACT Acceptance and Commitment Therapy; WHOQOL-BREF World Health Organisation quality of life – abbreviated version; SWLS: Satisfaction with Life Scale; SF-36 36-item short form survey; GDS Geriatric Depression Scale; CIDI-auto Composite International Diagnostic Interview; WPSI Washington Psychosocial Seizure Inventory; CCEI Crown-Crisp Experiential Index; BDI Beck Depression Inventory; MCMI-III: Millon Clinical Multiaxial Inventory -III