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

Liam Dorris, Helen Broome, Margaret Wilson, Cathy Grant, David Young, Gus Baker, Selina Balloo, Susan Bruce, Jo Campbell, Bernie Concannon, Nadia Conway, Lisa Cook, Cheryl Davis, Bruce Downey, Jon Evans, Diane Flower, Jack Garlovsky, Shauna Kearney, Susan J Lewis, Victoria Stephens & 2 others Stuart Turton, Ingram Wright

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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.

Original languageEnglish
Pages (from-to)89-98
Number of pages10
JournalEpilepsy & Behavior
Volume72
Early online date7 Jun 2017
DOIs
Publication statusPublished - 31 Jul 2017

Fingerprint

Epilepsy
Randomized Controlled Trials
Quality of Life
Learning
Knowledge Management
Suicidal Ideation
Control Groups
Learning Disorders
Self Care
Neurosciences
Nervous System Diseases
Caregivers
Mental Health
Emotions
Therapeutics
Nurses
Exercise
Pediatrics
Psychology

Keywords

  • paediatric epilepsy
  • randomized controlled trial
  • psychosocial
  • group intervention
  • epilepsy knowledge
  • adolescents
  • psychosocial intervention
  • holistic care
  • chronic illness

Cite this

Dorris, Liam ; Broome, Helen ; Wilson, Margaret ; Grant, Cathy ; Young, David ; Baker, Gus ; Balloo, Selina ; Bruce, Susan ; Campbell, Jo ; Concannon, Bernie ; Conway, Nadia ; Cook, Lisa ; Davis, Cheryl ; Downey, Bruce ; Evans, Jon ; Flower, Diane ; Garlovsky, Jack ; Kearney, Shauna ; Lewis, Susan J ; Stephens, Victoria ; Turton, Stuart ; Wright, Ingram. / A randomized controlled trial of a manual-based psychosocial group intervention for young people with epilepsy [PIE]. In: Epilepsy & Behavior. 2017 ; Vol. 72. pp. 89-98.
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title = "A randomized controlled trial of a manual-based psychosocial group intervention for young people with epilepsy [PIE]",
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.",
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author = "Liam Dorris and Helen Broome and Margaret Wilson and Cathy Grant and David Young and Gus Baker and Selina Balloo and Susan Bruce and Jo Campbell and Bernie Concannon and Nadia Conway and Lisa Cook and Cheryl Davis and Bruce Downey and Jon Evans and Diane Flower and Jack Garlovsky and Shauna Kearney and Lewis, {Susan J} and Victoria Stephens and Stuart Turton and Ingram Wright",
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Dorris, L, Broome, H, Wilson, M, Grant, C, Young, D, Baker, G, Balloo, S, Bruce, S, Campbell, J, Concannon, B, Conway, N, Cook, L, Davis, C, Downey, B, Evans, J, Flower, D, Garlovsky, J, Kearney, S, Lewis, SJ, Stephens, V, Turton, S & Wright, I 2017, 'A randomized controlled trial of a manual-based psychosocial group intervention for young people with epilepsy [PIE]', Epilepsy & Behavior, vol. 72, pp. 89-98. https://doi.org/10.1016/j.yebeh.2017.04.007

A randomized controlled trial of a manual-based psychosocial group intervention for young people with epilepsy [PIE]. / Dorris, Liam; Broome, Helen; Wilson, Margaret; Grant, Cathy; Young, David; Baker, Gus; Balloo, Selina; Bruce, Susan; Campbell, Jo; Concannon, Bernie; Conway, Nadia; Cook, Lisa; Davis, Cheryl; Downey, Bruce; Evans, Jon; Flower, Diane; Garlovsky, Jack; Kearney, Shauna; Lewis, Susan J; Stephens, Victoria; Turton, Stuart; Wright, Ingram.

In: Epilepsy & Behavior, Vol. 72, 31.07.2017, p. 89-98.

Research output: Contribution to journalArticle

TY - JOUR

T1 - A randomized controlled trial of a manual-based psychosocial group intervention for young people with epilepsy [PIE]

AU - Dorris, Liam

AU - Broome, Helen

AU - Wilson, Margaret

AU - Grant, Cathy

AU - Young, David

AU - Baker, Gus

AU - Balloo, Selina

AU - Bruce, Susan

AU - Campbell, Jo

AU - Concannon, Bernie

AU - Conway, Nadia

AU - Cook, Lisa

AU - Davis, Cheryl

AU - Downey, Bruce

AU - Evans, Jon

AU - Flower, Diane

AU - Garlovsky, Jack

AU - Kearney, Shauna

AU - Lewis, Susan J

AU - Stephens, Victoria

AU - Turton, Stuart

AU - Wright, Ingram

N1 - Copyright © 2017 Elsevier Inc. All rights reserved.

PY - 2017/7/31

Y1 - 2017/7/31

N2 - 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.

AB - 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.

KW - paediatric epilepsy

KW - randomized controlled trial

KW - psychosocial

KW - group intervention

KW - epilepsy knowledge

KW - adolescents

KW - psychosocial intervention

KW - holistic care

KW - chronic illness

U2 - 10.1016/j.yebeh.2017.04.007

DO - 10.1016/j.yebeh.2017.04.007

M3 - Article

VL - 72

SP - 89

EP - 98

JO - Epilepsy & Behavior

JF - Epilepsy & Behavior

SN - 1525-5050

ER -