The development of lived experience-centered word clouds to support research uncertainty gathering in degenerative cervical myelopathy: results from an engagement process and protocol for their evaluation, via a nested randomized controlled trial

Trials

Olesja Hazenbiller¹  Vafa Rahimi-Movaghar²  Michelle L. Starkey³  Xiaoyu Yang³  Oliver D. Mowforth³  Benjamin M. Davies³  Danyal Z. Khan³  Mark R. N. Kotter³  Angus G.K. McNair⁴  Sybil R. L. Stacpoole⁵  James D. Guest⁶  Shekar N. Kurpad⁷  Jefferson R. Wilson⁸  Robert Grossman⁹  Bizhan Aarabi^1,10  James Harrop^1,11  Lindsay Tetreault^1,12  Michael G. Fehlings^1,12  Brian K. Kwon^1,13  Toto Gronlund^1,14  Delphine Houlton^1,15  Julia Carter^1,15  Iwan Sadler^1,15  Emma K. Smith^1,16  Ellen Sarewitz^1,17  Sukhvinder Kalsi-Ryan^1,18  Evangeline Howard^1,19 

[1] AOSpine Spinal Cord Injury Knowledge Forum;Academic Department of Neurological Surgery, Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences;Academic Neurosurgery Unit & Anne McLaren Laboratory of Regenerative Medicine, Department of Clinical Neurosurgery, University of Cambridge;Center for Surgical Research, Bristol Medical School: Population Health Sciences, University of Bristol;Department of Clinical Neuroscience, Peterborough Hospital, North West Anglia NHS Foundation Trust and Cambridge University Hospitals NHS Foundation Trust, Addenbrooke’s Hospital;Department of Neurological Surgery, Miller School of Medicine, University of Miami;Department of Neurosurgery, Medical College of Wisconsin;Division of Neurosurgery, Department of Surgery, University of Toronto;Division of Neurosurgery, Houston Methodist Hospital;Division of Neurosurgery, Shock Trauma, University of Maryland;Division of Neurosurgery, Thomas Jefferson University Hospital;Division of Neurosurgery, Toronto Western Hospital, University Health Network, University of Toronto;Division of Spine Surgery, Vancouver General Hospital, University of British Columbia;James Lind Alliance, National Institute for Health Research;Myelopathy.org (Registered Charity England and Wales, No 1178673);School of General Practice, NHS Health Education East of England;The Goffin Consultancy, Goffin Consultancy Ltd;Toronto Rehabilitation Institute-LC, University Health Network;US Person with DCM Representative – CSU;

关键词: Cervical;    Myelopathy;    Word cloud;    OPLL;    Spondylosis;    Disc herniation;   

DOI  :  10.1186/s13063-021-05349-8

来源: DOAJ

【 摘 要 】

Abstract Objectives AO Spine REsearch objectives and Common Data Elements for Degenerative Cervical Myelopathy [RECODE-DCM] is a multi-stakeholder consensus process aiming to promote research efficiency in DCM. It aims to establish the top 10 research uncertainties, through a James Lind Alliance Priority Setting Partnership [PSP]. Through a consensus process, research questions are generated and ranked. The inclusion of people with cervical myelopathy [PwCM] is central to the process. We hypothesized that presenting PwCM experience through word cloud generation would stimulate other key stakeholders to generate research questions better aligned with PwCM needs. This protocol outlines our plans to evaluate this as a nested methodological study within our PSP. Methods An online poll asked PwCM to submit and vote on words associated with aspects of DCM. After review, a refined word list was re-polled for voting and word submission. Word clouds were generated and an implementation plan for AO Spine RECODE-DCM PSP surveys was subsequently developed. Results Seventy-nine terms were submitted after the first poll. Eighty-seven refined words were then re-polled (which added a further 39 words). Four word clouds were generated under the categories of diagnosis, management, long-term effects, and other. A 1:1 block randomization protocol to assess word cloud impact on the number and relevance of PSP research questions was generated. Conclusions We have shown it is feasible to work with PwCM to generate a tool for the AO Spine RECODE-DCM nested methodological study. Once the survey stage is completed, we will be able to evaluate the impact of the word clouds. Further research will be needed to assess the value of any impact in terms of stimulating a more creative research agenda.

【 授权许可】

Unknown