Morris, Christopher, Simkiss, Douglas E., Busk, Mary, Morris, Maureen, Allard, Amanda, Denness, Jacob, Janssens, Astrid, Stimson, Anna, Coghill, Joanna, Robinson, Kelly, Fenton, Mark and Cowan, Katherine (2015) Setting research priorities to improve the health of children and young people with neurodisability : a British Academy of Childhood Disability-James Lind Alliance Research Priority Setting Partnership. BMJ Open, Volume 5 (Number 1). Article number e006233. doi:10.1136/bmjopen-2014-006233 ISSN 2044-6055.

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Abstract

Objectives To engage young people, parent carers and clinicians in a systematic process to identify and prioritise research questions regarding ways to improve the health and well-being of children and young people with neurodisability.

Design British Academy of Childhood Disability (BACD)-James Lind Alliance research priority setting partnership bringing together patients, carers and clinicians as equal stakeholders.

Setting UK health service and community.

Methods The BACD Strategic Research Group formed the partnership. A Steering Group was established; charity and professional partner organisations were recruited. Suggestions were gathered in an open survey and from research recommendations for statutory guidance. Items were aggregated to formulate indicative research questions and verified as uncertainties from research evidence. An interim survey was used to rank the questions to shortlist topics. A mixed group of stakeholders discussed the top 25 questions at the final priority setting workshop agreeing a final rank order and the top 10 research priorities.

Participants Partner organisations were 13 charities and 8 professional societies. 369 people submitted suggestions (40% non-clinicians). 76 people participated in the interim prioritisation (26 parents, 1 young person, 10 charity representatives, 39 clinicians); 22 took part in the final workshop (3 young people, 7 parents, 3 charity representatives, 9 professionals).

Results The top three research priorities related to (1) establishing the optimal frequency and intensity (dose) for mainstream therapies, (2) means for selecting and encouraging use of communication strategies and (3) ways to improve children's attitudes towards disability. The top 10 included evaluating interventions to promote mobility, self-efficacy, mental health, continence, physical fitness, educational inclusion and reduce impacts of sleep disturbance.

Conclusions The methodology provided a systematic and transparent process to identify research priorities that included stakeholders that have typically not contributed to setting the research agenda. The top 10 and other topics identified provide a resource for researchers and agencies that fund research.

Item Type:	Journal Article
Subjects:	R Medicine > RJ Pediatrics
Divisions:	Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences > Mental Health and Wellbeing Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School
Library of Congress Subject Headings (LCSH):	Developmental disabilities -- Research, Children with disabilities -- Research
Journal or Publication Title:	BMJ Open
Publisher:	BMJ
ISSN:	2044-6055
Official Date:	28 January 2015
Dates:	Date Event 28 January 2015 Published 17 November 2014 Accepted 29 July 2014 Submitted
Volume:	Volume 5
Number:	Number 1
Article Number:	Article number e006233
DOI:	10.1136/bmjopen-2014-006233
Status:	Peer Reviewed
Publication Status:	Published
Access rights to Published version:	Restricted or Subscription Access
Date of first compliant deposit:	29 December 2015
Date of first compliant Open Access:	29 December 2015
Funder:	Royal College of Paediatrics and Child Health (RCPCH), Cerebra (Organization)

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