PACES in epilepsy: Results of a self‐management randomized controlled trial
Open accessAbstract
Summary: Objective: Self‐management challenges facing adults with epilepsy include limited understanding of the condition and treatment, associated psychosocial issues, and lack of community integration. Self‐management interventions improve patients' medical, life role, and emotional management. Previous interventions, developed from expert opinion, indicated issues with participant engagement/retention, and limited follow‐up periods. PACES in Epilepsy addressed methodologic concerns by utilizing patient needs assessment data (n = 165) to derive self‐management content and program features for evaluation via randomized controlled trial (RCT). Methods: Participants were adults with chronic epilepsy (n = 83), without serious mental illness or substantive intellectual impairment, who were recruited from two epilepsy centers. Participants were assigned randomly to intervention or treatment‐as‐usual groups. Outcomes included the Epilepsy Self‐Management Scale (ESMS), Epilepsy Self‐Efficacy Scale (ESES), Quality of Life in Epilepsy‐31 (QOLIE‐31), Patient Health Questionnaire‐9 (PHQ‐9), and the Generalized Anxiety Disorder‐7 (GAD‐7), administered at baseline, postintervention (8 weeks), and 6 months postintervention. The intervention was an 8‐week group of 6–8 adults co‐led by a psychologist and trained peer with epilepsy that met one evening per week at a hospital for 75 min. Topics included medical, psychosocial, cognitive, and self‐management aspects of epilepsy, in addition to community integration and optimizing epilepsy‐related communication. The treatment group provided satisfaction ratings regarding program features. Results: PACES participants (n = 38) improved relative to controls (n = 40) on the ESMS (p < 0.001) and subscales [Information (p < 0.001); Lifestyle (p < 0.002)]; ESES (p < 0.001); and QOLIE‐31 (p = 0.002). At 6‐month follow up, PACES participants remained improved on the ESMS (p = 0.004) and Information subscale (p = 0.009); and Energy/Fatigue (p = 0.032) and Medication Effects (p = 0.005) of the QOLIE‐31. Attrition in both groups was low (8% in each group) and all program satisfaction ratings exceeded 4.0/5.0, with leadership (4.76), topics (4.53), and location (4.30) as the most highly rated aspects. Significance: A consumer generated epilepsy self‐management program appears to be a promising intervention from multiple perspectives, particularly in relation to disability management.
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QOLIE-31/31-P/-89 was used in 17 studies (71%), of which 12 (70%) were considered for meta-analyses due to satisfactory methodological homogeneity.
“It was used in 17 studies (71%), of which 12 (70%) were considered for meta-analyses due to satisfactory methodological homogeneity. 26,27,29,30,33,36,37,41,46,47,49,50”
From Cochrane systematic review and meta-analysis of the impact of psychological treatments for people with epilepsy on health-related quality of life (2018) · cites this paper as [46]
The trial reports QOLIE-31 scores in Table 3 (Treatment effects), so it supports citing this paper as an example of a study that used the measure. Its Data analysis section describes analyses of this trial, not a review or meta-analysis; it does not establish the totals of 17 studies or 12 eligible for pooling, or their methodological homogeneity. (LLM, conf=0.84)
Experimental — accuracy not yet measuredOf the 24 studies, 11 examined group therapy (46%).
“Of the 24 studies, 11 examined group therapy (46%), 20,29,30,33,37,38,40 -42,46,47”
From Cochrane systematic review and meta-analysis of the impact of psychological treatments for people with epilepsy on health-related quality of life (2018) · cites this paper as [46]
Two interventions (8%) included peer coaches with epilepsy.
“Two interventions (8%) included peer coaches with epilepsy. 31,46”
From Cochrane systematic review and meta-analysis of the impact of psychological treatments for people with epilepsy on health-related quality of life (2018) · cites this paper as [46]
The meta-analysis comprised data from 9 studies (37%) with a total of 468 participants.
“Consequently, the meta-analysis comprised data from 9 studies (37%) 26 -30,33,36,46,49,50 with a total of 468 participants (see studies highlighted in gray in Table 1).”
From Cochrane systematic review and meta-analysis of the impact of psychological treatments for people with epilepsy on health-related quality of life (2018) · cites this paper as [46]
A high ROB for attrition bias was suggested in 10 studies (42%) because of larger numbers of missing data (cutoff ≥15% for short-term interventions <6 months and ≥20% for long-term interventions ≥6 months) that were balanced in 1 study and unbalanced in 7 studies.
“A high ROB was suggested in 10 studies (42%) because of larger numbers of missing data (a cutoff of ≥ 15% for short-term interventions < 6 months and ≥ 20% for long-term interventions of ≥ 6 months was applied) that were, however, balanced in 1 study (4%) 46 and unbalanced in 7 studies (29%). 28,30.37,41,43,45,50”
From Cochrane systematic review and meta-analysis of the impact of psychological treatments for people with epilepsy on health-related quality of life (2018) · cites this paper as [46]
Seven studies (64%) reported a significant postintervention difference between the intervention and the control groups for depressive symptoms.
“Seven studies (64%) reported a significant postintervention difference between the intervention and the control groups. 26 -29,31,32,36,46”
From Cochrane systematic review and meta-analysis of the impact of psychological treatments for people with epilepsy on health-related quality of life (2018) · cites this paper as [46]
A total of 5 studies (21%) included anxiety level as an outcome measure, and all of them reported no significant baseline difference between the treatment and control groups.
“A total of 5 studies (21%) included anxiety level as an outcome measure 28,30,36,43,46 ; all of them reported no significant baseline difference between the treatment and control groups.”
From Cochrane systematic review and meta-analysis of the impact of psychological treatments for people with epilepsy on health-related quality of life (2018) · cites this paper as [46]
A rating of low ROB was confirmed based on document review of registered protocols provided by the authors for 9 studies (37%).
“A rating of low ROB was confirmed based on document review of registered protocols provided by the authors for 9 studies (37%). 32,36,40,42,44 -46,49,50”
From Cochrane systematic review and meta-analysis of the impact of psychological treatments for people with epilepsy on health-related quality of life (2018) · cites this paper as [46]
The Methods section says the PACES study protocol was approved by institutional review boards, but does not say it was registered or provided to the citing authors. The Randomization and group formulation and Discussion sections describe trial procedures and limitations, not the citing paper’s document review, low-risk-of-bias rating, or count of nine studies (37%). (LLM, conf=0.74)
Experimental — accuracy not yet measuredThe risk of infidelity to the intervention protocol was considered to be relatively low whenever the therapist delivering the intervention coincided with the developer of the intervention protocol (n = 6, 25%).
“Furthermore, the risk of infidelity to the intervention protocol was considered to be relatively low whenever the therapist delivering the intervention coincided with the developer of the intervention protocol (n = 6, 25%) 25 -27,34,46,48,49”
From Cochrane systematic review and meta-analysis of the impact of psychological treatments for people with epilepsy on health-related quality of life (2018) · cites this paper as [46]
The Development of the PACES Program section describes how the intervention was designed, and the Site characteristics section identifies its deliverers as two psychologists and a peer mentor. Neither identifies the deliverers as the protocol developers; the Discussion also does not assess a low risk of protocol infidelity on that basis. The cited paper therefore does not verify the claimed overlap. (LLM, conf=0.70)
Experimental — accuracy not yet measured
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- Authors
- Fraser, R. T., Johnson, E. K., Lashley, S., Barber, J., Chaytor, N., Miller, J. W., Ciechanowski, P., Temkin, N., & Caylor, L.
- Affiliations
- University of Washington (US)
- Swedish Neuroscience Institute Seattle Washington U.S.A
- Corresponding author
- Fraser, Robert T.
- Venue
- Epilepsia
- Publisher
- Wiley
- Published
- 2015-06-29
- Volume
- 56
- Issue
- 8
- Pages
- 1264-1274
- ISSN
- 0013-9580 (ISSN-L)
- 1528-1167
- OpenAlex
- W1897918544
- Cited by
- 103
- References
- 36
- Citations by year
- 2026: 9 · 2025: 8 · 2024: 7 · 2023: 4 · 2022: 7 · 2021: 10 · 2020: 11 · 2019: 14 · 2018: 15 · 2017: 12 · 2016: 5
- FWCI
- 8.67
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Epilepsia (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Centers for Disease Control and Prevention (DP002273)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Epilepsy research and treatment
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Diabetes Management and Education
- Keywords
- epilepsy self-management, self-management interventions, patient needs assessment, quality of life, depression, anxiety, social reintegration, patient engagement, patient satisfaction, attrition, QOLIE-31
- MeSH terms
- Adult, Anxiety, Depression, Epilepsy, Female, Humans, Male, Middle Aged, Patient Education as Topic, Quality of Life, Self Care, Treatment Outcome, Patient Satisfaction, Self Efficacy, Needs Assessment
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