Methods
ODM, myelopathy, Myelopathy
MYELOPATHY, MYELOPATHY, DISEASE CHARACTERISTIC
A detailed description of the methodology used to design and create the AO Spine RECODE-DCM word clouds has been published [In brief, word clouds were generated in collaboration with Myelopathy Support, an arm of Myelopathy.org, which is an international DCM charity. Myelopathy Support is an online community hosted on Facebook (Meta, California, USA). The group is closed, and access is moderated by Myelopathy.org volunteers. Individuals wishing to join the group are required to confirm they have myelopathy and will adhere to community guidelines. Prior experience has demonstrated that demographics and disease characteristics of this group, aside from a female gender predominance, are broadly representative of DCM clinical trials [Over a 2-week period, 4 posts were pinned to the top of the Myelopathy Support group: (1) “What words do you associate with the diagnosis phase of myelopathy?” (2) “What words do you associate with the management phase of myelopathy?” (3) “What words do you associate with the long-term care/living with myelopathy?” (4) “Any other relevant words?”. The posts were accompanied by covering information outlining the background to the exercise, piloted and approved by IS. Group members were encouraged to add their suggestions as comments on the posts and to vote for the words with which they agreed. No data was collected on individual participants. There was no limit on how many times a group member could contribute; each member could vote for each word only once.Following the 2-week period, the submitted words and their respective votes were reviewed by the AO Spine RECODE-DCM Management Group [ODM, ES, DK, IS, BMD, OH] and duplicated words were removed. Words considered to be out of scope were removed and words felt to be better reflected in a different section were moved. Through consultation with representatives of the other healthcare professional (oHCP) stakeholder group (a general practitioner (EKS) and a neurologist (SRLS) and discussion amongst the management group, some additional suggestions were added. The aim of this was to include the perspective of another under-represented stake-holder group [The final lists were re-posted to the group as a series of polls organised to allow members to review the list and vote for the words with which they most agreed. Members could continue to submit additional suggestions, which were then available to be polled. Again, members could not vote more than once for each word. This second-round exercise ran for a further 2 weeks. Final suggestions and polling were reviewed by the management group, with removal of duplicates and out of scope suggestions. A flow chart of the processes used is shown in Fig. Word Cloud Development. A 3-stage process was used to collect unique words relating to DCM and survey their popularity to create word clouds. Words were initially submitted by Myelopathy Support, a community of PwDCM and their supporters. These were then processed by the AO Spine RECODE-DCM Management Group and supplemented with the perspectives of a general practitioner and a neurologist; arrows denote added and removed words. The final list of words was re-reviewed by the Myelopathy Support community. Voting was conducted to capture the popularity of each word and further suggestions were also put forward. The four-column tables represent the number of words per subsection, ordered from left to right as: diagnosis, treatment, long-term management and otherWord clouds were generated using WordArt.com (California, USA). The size of the word was proportional to the number of votes it received (Fig. Word clouds generated from the Myelopathy Support group polling. Words were associated with (