A randomized controlled trial of a manual-based psychosocial group intervention for young people with epilepsy [PIE]

Dorris, Liam and Broome, Helen and Wilson, Margaret and Grant, Cathy and Young, David and Baker, Gus and Balloo, Selina and Bruce, Susan and Campbell, Jo and Concannon, Bernie and Conway, Nadia and Cook, Lisa and Davis, Cheryl and Downey, Bruce and Evans, Jon and Flower, Diane and Garlovsky, Jack and Kearney, Shauna and Lewis, Susan J and Stephens, Victoria and Turton, Stuart and Wright, Ingram (2017) A randomized controlled trial of a manual-based psychosocial group intervention for young people with epilepsy [PIE]. Epilepsy & Behavior, 72. pp. 89-98. ISSN 1525-5069 (https://doi.org/10.1016/j.yebeh.2017.04.007)

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We conducted an exploratory RCT to examine feasibility and preliminary efficacy for a manual-based psychosocial group intervention aimed at improving epilepsy knowledge, self-management skills, and quality of life in young people with epilepsy. METHOD: Eighty-three participants (33:50m/f; age range 12-17years) were randomized to either the treatment or control group in seven tertiary paediatric neuroscience centres in the UK, using a wait-list control design. Participants were excluded if they reported suicidal ideation and/or scored above the cut off on mental health screening measures, or if they had a learning disability or other neurological disorder. The intervention consisted of six weekly 2-hour sessions using guided discussion, group exercises and role-plays facilitated by an epilepsy nurse and a clinical psychologist. RESULTS: At three month follow up the treatment group (n=40) was compared with a wait-list control group (n=43) on a range of standardized measures. There was a significant increase in epilepsy knowledge in the treatment group (p=0.02). Participants receiving the intervention were also significantly more confident in speaking to others about their epilepsy (p=0.04). Quality of life measures did not show significant change. Participants reported the greatest value of attending the group was: Learning about their epilepsy (46%); Learning to cope with difficult feelings (29%); and Meeting others with epilepsy (22%). Caregiver and facilitator feedback was positive, and 92% of participants would recommend the group to others. CONCLUSION: This brief psychosocial group intervention was effective in increasing participants' knowledge of epilepsy and improved confidence in discussing their epilepsy with others. We discuss the qualitative feedback, feasibility, strengths and limitations of the PIE trial.