Validation of the school age self‐administered pediatric bleeding questionnaire (Self‐PBQ) in children aged 8–12 years

Abstract

Background In the pediatric population, pathologic bleeding is often challenging to identify. The pediatric bleeding questionnaire (PBQ) was developed as a screening tool for von Willebrand disease (VWD) but was designed to be self‐completed by children above 12 years of age. The study objective was to determine whether a modified Self‐PBQ could be completed by 8‐ to 12‐year‐old children with adult assistance. Procedure The initial phase involved seven children who underwent cognitive debriefing to identify problems in the questionnaire, resulting in modifications to wording and response options. In phase 2, children completed the modified Self‐PBQ independently or with assistance from their parent at five Canadian treatment centers. Parents filled out the Self‐PBQ separately to serve as a comparison. Bleeding scores derived from the child self‐report were compared to those of the parent proxy. Results Twenty‐nine out of 31 patient/parent pairs successfully completed the Self‐PBQ. Child and parent scores demonstrated a high level of agreement with an intraclass correlation (ICC) of 0.825. In the age subgroup analysis, the ICC was 0.834 and 0.824 for the 8‐ to 9‐year‐old and 10‐ to 12‐year‐old groups, respectively. The ICC was also determined in children with type 1 VWD (ICC = 0.829) versus those with more severe bleeding disorders (ICC = 0.802). Thus, age and disease severity had no significant effect on degree of agreement. Conclusions Our study shows that agreement was maintained even in younger children aged 8–9 years and in children with varying bleeding phenotypes. This supports the administration of the modified Self‐PBQ to 8‐ to 12‐year‐old children.

Navigating Hemostasis of Bleeding Among Children With β-Thalassemia

“…The majority of our patients (96%) had mucosal bleeding (epistaxis [72%], gum and nasal bleeding [24%]), only 4% experienced ecchymosis cutaneous bleeding. Of the 96% of mucosal bleeding; 54% had bleeding episodes with score 3 and 4 and 46% had bleeding episodes with score 2 according to the PBQ 7…”

“…Of the 96% of mucosal bleeding; 54% had bleeding episodes with score 3 and 4 and 46% had bleeding episodes with score 2 according to the PBQ. 7 Table 1 shows the demographic, clinical, and laboratory data of the patients.…”

“…A bleeding score based on Pediatric Bleeding Questionnaire (PBQ) was the tool used for bleeding. 7 Laboratory investigations: 2 mL of EDTA tube were collected from all the patients before blood transfusion for complete blood count and platelets count (Sysmex-Germany), Prothrombin time (PT) (STA-Rmax, Stago-France), prothrombin concentration (PT), activated partial thromboplastin time, liver function tests, hepatitis C viru antibodies, and serum ferritin were derived from patients' files. A volume of 10 mL were collected into 3.2% sodium citrate (9 : 1) (9 parts of blood to 1 part of anticoagulant) for assessment of aggregation on Chrono-log corporation aggregometer (Havertown, USA) by measuring the platelet aggregation through monitoring of optical density and light transmission (LTA).…”

Diagnosis of haemophilia and other inherited bleeding disorders ‐ Is a new paradigm needed?

“…Applying validated bleeding assessment tools (BAT) to children or adults presenting with bleeding 11 or screening them prospectively through such self‐administered instruments could be of value in identifying potential patients with bleeding disorders 16‐18 . The ISTH BAT has been validated in both children and adults in a variety of bleeding disorders including von Willebrand disease and the rare bleeding disorders 19‐22 .…”

The predictive value of bleeding score on the diagnosis of Von Willebrand disease in children applied to the hematologic clinic with epistaxis

“…Bowman The PBS examine the presence and severity of bleeding symptoms including epistaxis, bleeding from minor wounds, easy bruising, oral cavity bleeding, bleeding after dental or surgical procedures, gastrointestinal tract bleeding, menorrhagia (5). The patient is questioned for epistaxis, easy bruising, bleeding after dental or surgical procedures and menorrhagia (6). Scoring is based on a scale from 0 to 4 in most categories, and -1 to 4 in some categories, with representing the most severe symptoms (7).…”