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Table 2 Survey of HHT patients regarding consultation for epistaxis with ENT specialists and ER physicians and relative timing of HHT diagnosis

From: Targeting under-diagnosis in hereditary hemorrhagic telangiectasia: a model approach for rare diseases?

Proportion of respondents (%) 940/2836 (33 %)
Mean age ± SD at time of survey 54.1 ± 14.1 years
Mean age ± SD at time of diagnosis 37.1 ± 15.5 years
Proportion of females (%) 630/940 (67 %)
Proportion of North Americans 738/940 (79 %)
Proportion of patients with recurrent epistaxis (%) 807/940 (86 %)
Proportion of patients with ENT consult prior to HHT diagnosis (%) 349/940 (37 %)
Proportion of patients with ER consult prior to HHT diagnosis (%) 154/940 (16 %)
Mean age ± SD at first ENT consult 27.8 ± 16.8 years
Mean age ± SD at first ER consult 30.1 ± 17.4 years
Mean interval of time ± SD from initial ENT consult to HHT diagnosis 13.9 ± 12.2 years
Mean interval of time ± SD from initial ER consult to HHT diagnosis 11.3 ± 12.6 years