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Health services research
Research
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
  1. Christopher Morris1,
  2. Doug Simkiss2,
  3. Mary Busk3,
  4. Maureen Morris3,
  5. Amanda Allard4,
  6. Jacob Denness4,
  7. Astrid Janssens1,
  8. Anna Stimson1,
  9. Joanna Coghill5,
  10. Kelly Robinson6,
  11. Mark Fenton7,
  12. Katherine Cowan8
  1. 1PenCRU, University of Exeter Medical School, University of Exeter, Exeter, UK
  2. 2Warwick Medical School, University of Warwick, Coventry, UK
  3. 3National Network of Parent Carer Forums, London, UK
  4. 4Council for Disabled Children, National Children's Bureau, London, UK
  5. 5Addenbrookes Hospital NHS Trust, Cambridge, UK
  6. 6The British Academy of Childhood Disability, London, UK
  7. 7UK Database of Uncertainties about the Effects of Treatments (UK DUETs), National Institute for Health and Care Excellence, UK
  8. 8The James Lind Alliance, NIHR Evaluation Trials and Studies Coordinating Centre, Southampton, UK
  1. Correspondence to Dr Christopher Morris; christopher.morris{at}exeter.ac.uk

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

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

https://doi.org/10.1136/bmjopen-2014-006233

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