Search

Abstract Introduction AO Spine RECODE-DCM was a multi-stakeholder priority setting partnership (PSP) to define the top ten research priorities for degenerative cervical myelopathy (DCM). Priorities were generated and iteratively refined using a series of surveys administered to surgeons, other healthcare professionals (oHCP) and people with DCM (PwDCM). The aim of this work was to utilise word clouds to enable the perspectives of people with the condition to be heard earlier in the PSP process than is traditionally the case. The objective was to evaluate the added value of word clouds in the process of defining research uncertainties in National Institute for Health Research (NIHR) James Lind Alliance (JLA) Priority Setting Partnerships. Methods Patient-generated word clouds were created for the four survey subsections of the AO Spine RECODE-DCM PSP: diagnosis, treatment, long-term management and other issues. These were then evaluated as a nested methodological study. Word-clouds were created and iteratively refined by an online support group of people with DCM, before being curated by the RECODE-DCM management committee and expert healthcare professional representatives. The final word clouds were embedded within the surveys administered at random to 50% of participants. DCM research uncertainties suggested by participants were compared pre- and post-word cloud presentation. Results A total of 215 (50.9%) participants were randomised to the word cloud stream, including 118 (55%) spinal surgeons, 52 (24%) PwDCM and 45 (21%) oHCP. Participants submitted 434 additional uncertainties after word cloud review: word count was lower and more uniform across each survey subsections compared to pre-word cloud uncertainties. Twenty-three (32%) of the final 74 PSP summary questions did not have a post-word cloud contribution and no summary question was formed exclusively on post-word cloud uncertainties. There were differences in mapping of pre- and post-word cloud uncertainties to summary questions, with greater mapping of post-word cloud uncertainties to the number 1 research question priority: raising awareness. Five of the final summary questions were more likely to map to the research uncertainties suggested by participants after having reviewed the word clouds. Conclusions Word clouds may increase the perspective of underrepresented stakeholders in the research question gathering stage of priority setting partnerships. This may help steer the process towards research questions that are of highest priority for people with the condition.

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.

BackgroundDegenerative cervical myelopathy (DCM) is a progressive neurological condition, characterized by spinal cord injury secondary to degenerative changes in the spine. Misdiagnosis in primary care forms part of a complex picture leading to an average diagnostic delay of 2 years. This leads to potentially preventable and permanent disability. A lack of awareness secondary to deficits in postgraduate education may contribute to these delays. ObjectiveThis study aims to assess the awareness of DCM in the setting of general practice. MethodsGeneral practitioners completed a quantitative web-based cross-sectional questionnaire. The 17-item questionnaire captured data regarding demographics, subjective awareness, and objective knowledge. The questionnaire was disseminated via professional networks, including via practice managers and senior practice partners. Incentivization was provided via a bespoke DCM fact sheet for those that completed the survey. ResultsA total of 54 general practitioners representing all 4 UK nations responded to the survey. General practitioners most commonly self-assessed that they had “limited awareness” of DCM (n=24, 51%). General practitioners felt most commonly “moderately able” to recognize a case of DCM (n=21, 46%). In total, 13% (n=6) of respondents reported that they would not be at all able to recognize a patient with DCM. Respondents most commonly reported that they were “moderately confident” in their ability to triage a patient with DCM (n=19, 41%). A quarter of respondents reported no prior introduction to DCM throughout their medical training (n=13, 25%). The mean score for knowledge-based questions was 42.6% (SD 3.96%) with the lowest performance observed in patient demographic and clinical recognition items. ConclusionsGeneral practitioners lack confidence in the recognition and management of DCM. These findings are consistent with the diagnostic delays previously described in the literature at the primary care level. Further work to develop and implement educational interventions to general practitioner practices is a crucial step to improving patient outcomes in DCM.