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 (MBDs). There has been increased interest in the use of bleeding assessment tools (BATs) to more objectively quantify the presence and severity of bleeding symptoms. To date, the administration of BATs 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‐1VWD 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 AC1 = 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 AC1 = 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.