Route to diagnosis
The route to diagnosis is detailed in Figure 2. Upon onset of symptoms, the majority of patients (n=92) first visited a paediatrician, followed by 13 patients who visited a neurologist). 88% of all patients were treated at a private hospital. 90% of patients had 1-3 visits to HCP prior to diagnosis. There was an equal distribution of distance travelled between home and the hospital where the patient was diagnosed. Despite 64% of all patients residing in the city, only 35% of all patients travelled <20km to get diagnosed. 19% travelled <100km, 27% travelled between 100-500km and 19% travelled >500km. Almost three quarters of all patients were self- financed (73%), whereas the rest received mixed funding (11%), free treatment (9%) or were covered by insurance (7%).