Fig. 2

Experience with diagnosis and comorbidities. A Asked about time to diagnosis, patients and carers reported a median time to diagnosis of approximately 6 months (mean: 14 months). Clinicians/clinical academics estimated a median and mean of 6 months. B 56% of CYP/carers reported they had received an alternative diagnosis prior to correct diagnosis. Most common initial diagnoses included osteoarticular infections, biomechanical joint pain, “inflammation”, and cancer. Among expert clinicians/clinical academics, 100% reported that, in their experience, CNO patients receive an incorrect working diagnosis before CNO is diagnosed, with the most common being infectious causes. C Of all CYP/carers responding, 46% reported inflammatory conditions alongside CNO; 41% of these patients experienced psoriasis, 21% had inflammatory bowel disease (IBD), and 18% had arthritis. All clinicians had treated patients with an additional inflammatory condition, the most common being arthritis, followed by psoriasis and IBD