Odds of early diagnosis using symptom categories.

A forest plot of individual odds ratios for each symptom category. Error bars represent 95% confidence intervals of the odds ratio. Categories with N ≤ 1 have been left out for the purposes of clear illustration.</p

Flowchart of the study design.

The findings from previous semi-structured (Round 1) interviews [20] and paired internet survey (Round 2) [16], were used to produce this survey (Round 3).</p

Short and longlisted survey outcomes.

*Outcomes added after respondent suggestion in round 2. 2 shortlisted symptoms (italicised) were expanded “anatomically” for the longlist. (DOCX)</p

Odds of early diagnosis using individual symptoms.

A forest plot of individual odds ratios for each initial symptom. Error bars represent 95% confidence intervals of the odds ratio.</p

Copy of round 2 internet survey.

BackgroundDegenerative cervical myelopathy (DCM) is a common and disabling condition. Early effective treatment is limited by late diagnosis. Conventional descriptions of DCM focus on motor and sensory limb disability, however, recent work suggests the true impact is much broader. This study aimed to characterise the symptomatic presentation of DCM from the perspective of people with DCM and determine whether any of the reported symptoms, or groups of symptoms, were associated with early diagnosis.MethodsAn internet survey was developed, using an established list of patient-reported effects. Participants (N = 171) were recruited from an online community of people with DCM. Respondents selected their current symptoms and primary presenting symptom. The relationship of symptoms and their relationship to time to diagnosis were explored. This included symptoms not commonly measured today, termed ‘non-conventional’ symptoms.ResultsAll listed symptoms were experienced by >10% of respondents, with poor balance being the most commonly reported (84.2%). Non-conventional symptoms accounted for 39.7% of symptomatic burden. 55.4% of the symptoms were reported as an initial symptom, with neck pain the most common (13.5%). Non-conventional symptoms accounted for 11.1% of initial symptoms. 79.5% of the respondents were diagnosed late (>6 months). Heavy legs was the only initial symptom associated with early diagnosis.ConclusionsA comprehensive description of the self-reported effects of DCM has been established, including the prevalence of symptoms at disease presentation. The experience of DCM is broader than suggested by conventional descriptions and further exploration of non-conventional symptoms may support earlier diagnosis.</div

Survey symptom classification–conventional symptoms.

Survey symptom classification–conventional symptoms.</p

Survey symptom classification–non-conventional symptoms.

Survey symptom classification–non-conventional symptoms.</p

Bar chart of the prevalence of symptoms.

The number of respondents reporting each symptom are displayed at the end of the bar.</p

Comparison of demographics of survey respondents in round 2 and round 3.

Comparison of demographics of survey respondents in round 2 and round 3.</p

Pie chart illustrating the proportion of overall symptoms reported that were attributable to each symptom category.

Conventional symptom segments are illustrated with lines and non-conventional symptom segments with dots.</p