Liam Dorris1, Helen Broome2, Margaret Wilson3, Cathy Grant4, David Young5, Gus Baker6, Selina Balloo7, Susan Bruce8, Jo Campbell9, Bernie Concannon7, Nadia Conway8, Lisa Cook10, Cheryl Davis10, Bruce Downey9, Jon Evans11, Diane Flower12, Jack Garlovsky10, Shauna Kearney7, Susan Lewis13, Victoria Stephens12, Stuart Turton13, Ingram Wright12. 1. Institute of Mental Health & Wellbeing, University of Glasgow, Glasgow G12 OXH, Scotland, UK; Paediatric Neurosciences Research Group, Royal Hospital for Children, Glasgow G51 4TF, Scotland, UK. Electronic address: liam.dorris@ggc.scot.nhs.uk. 2. Institute of Mental Health & Wellbeing, University of Glasgow, Glasgow G12 OXH, Scotland, UK; Paediatric Neurosciences Research Group, Royal Hospital for Children, Glasgow G51 4TF, Scotland, UK. 3. Paediatric Neurosciences Research Group, Royal Hospital for Children, Glasgow G51 4TF, Scotland, UK. 4. University Hospitals Leicester NHS Trust, Leicester, UK. 5. University of Strathclyde, Glasgow, UK. 6. Neuroscience Group, University of Liverpool, UK. 7. Birmingham Children's Hospital NHS Foundation Trust, Birmingham, UK. 8. Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle, UK. 9. Royal Aberdeen Children's Hospital, NHS Grampian, UK. 10. Sheffield Children's Hospital NHS Foundation Trust, Sheffield, UK. 11. Institute of Mental Health & Wellbeing, University of Glasgow, Glasgow G12 OXH, Scotland, UK. 12. University Hospitals Bristol NHS Foundation Trust, Bristol, UK. 13. County Durham and Darlington NHS Foundation Trust, Durham, UK.
Abstract
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.
RCT Entities:
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.
Authors: Rosa Michaelis; Venus Tang; Sarah J Nevitt; Janelle L Wagner; Avani C Modi; William Curt LaFrance; Laura H Goldstein; Milena Gandy; Rebecca Bresnahan; Kette Valente; Kirsten A Donald; Markus Reuber Journal: Cochrane Database Syst Rev Date: 2020-09-07