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

Abstract

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.

Use of electronic self‐administered bleeding assessment tool in diagnosis of paediatric bleeding disorders

“…The median bleeding scores noted in our study were 4 for both the eBAT and pBAT, which are comparable to past self‐administered BATs 7,16,17 . The eBAT consistently recognized underlying bleeding disorders with high sensitivity at 94%.…”

First‐time rhesus monkey mothers, and mothers of sons, preferentially engage in face‐to‐face interactions with their infants

“…Lipsmacking was observed so rarely that it was not included in this dataset. We found moderate agreement for GR (AC1: 0.57, SE: 0.068, P < 0.001), substantial agreement for SEP (AC1: 0.72, SE: 0.062, P < 0.001), and almost perfect agreement for MG (as defined by Lang et al, 2014; AC1: 0.84, SE: 0.051, P < 0.001). In instances in which MG was recorded by both observers, the agreement on the identity of the initiator of MG (i.e.…”

“…ac1.raw implemented in R 3.1.2. This method is more robust than Cohen’s κ , as it is not sensitive to infrequent behaviors (such as MG), which can result in high inter-observer agreement (most probably due to chance, given the high probability of having zeros) but low k values [Gwet, 2002a,b, 2014; Lang et al, 2014; Wongpakaran et al, 2013]. Since we aimed to assess the presence of MG, GR, and SEP, we calculated inter-rater reliability on the basis of the number of bouts each rater observed for each behavior.…”

Generation and optimization of the self‐administered pediatric bleeding questionnaire and its validation as a screening tool for von Willebrand disease

“…Expanding on this, Lang et al. demonstrated the accuracy of a parent‐administered pediatric MCMDM‐1 VWD questionnaire in reflecting BSs generated through expert administration …”