The accuracy of a patient or parent‐administered bleeding assessment tool administered in a paediatric haematology clinic

Summary Classifying and describing bleeding symptoms is essential in the diagnosis and management of patients with mild bleeding disorders ( MBD s). There has been increased interest in the use of bleeding assessment tools ( BAT s) to more objectively quantify the presence and severity of bleeding symptoms. To date, the administration of BAT s has been performed almost exclusively by clinicians; the accuracy of a parent‐proxy BAT has not been studied. Our objective was to determine the accuracy of a parent‐administered BAT by measuring the level of agreement between parent and clinician responses to the Condensed MCMDM ‐1 VWD Bleeding Questionnaire. Our cross‐sectional study included children 0–21 years presenting to a haematology clinic for initial evaluation of a suspected MBD or follow‐up evaluation of a previously diagnosed MBD . The parent/caregiver completed a modified version of the BAT ; the clinician separately completed the BAT through interview. The mean parent‐report bleeding score ( BS ) was 6.09 (range: −2 to 25); the mean clinician report BS was 4.54 (range: −1 to 17). The mean percentage of agreement across all bleeding symptoms was 78% (mean κ = 0.40; Gwet's AC 1 = 0.74). Eighty percent of the population had an abnormal BS (defined as ≥2) when rated by parents and 76% had an abnormal score when rated by clinicians (86% agreement, κ = 0.59, Gwet's AC 1 = 0.79). While parents tended to over‐report bleeding as compared to clinicians, overall, BSs were similar between groups. These results lend support for further study of a modified proxy‐report BAT as a clinical and research tool.