Koert Gooijer

100 Evaluation of bleeding tendency The Self-BAT is a self-administered bleeding assessment tool validated in Canada and the Netherlands 15,16 and is based on the International Society on Thrombosis and Haemostasis Bleeding Assessment Tool (ISTH-BAT)17,18. The 14 Self-BAT domains cover epistaxis, cutaneous bleeding, minor wounds, haematuria, gastrointestinal bleeds, oral cavity bleeds, prolonged bleeding after trauma, surgeries or tooth extraction, menorrhagia, postpartum haemorrhage, muscle, joint and central nervous system bleeds and other bleedings. Each domain scores from 0 (absence of bleeding symptoms) to 4 (symptoms requiring extensive medical intervention). The distinction between 0 points and 1 point is of critical importance since score 1 means the symptom meets the minimal criteria defining a significant bleeding. This distinction between the different scores is described by the ISTH Scientific and Standardization Committee 19 and independently selected by 2 trained researchers (KG and HB). Different scores were reassessed and resolved by consensus. A total bleeding score is calculated by sum of scores for all BAT domains. A total bleeding score in men ≥ 4 and in women ≥ 6 was defined as an increased bleeding tendency 15,16. Data collection All data obtained from the Self-BAT were collected digitally and analysed using IBM SPSS Statistics Version 24. Variables were presented as numbers (n) and frequencies (%), mean and SD and median and interquartile range (IQR). Comparison of means between OI types 1, 3 and 4 was done using ANOVA with Bonferroni comparison for post-hoc testing. P values ≤ 0.05 were considered to indicate statistical significance. Results Of 328 invited OI patients, 225 patients (69%) returned the questionnaire. In total, 30 patients did not fully complete the questionnaire and were therefore excluded from the analysis. Therefore 195 questionnaires were available for analysis (completion rate 60%). No reasons for non-completion or signs of selective response were found. Participant characteristics The study population was predominantly of Dutch origin with a male/female ratio of 71/124. It concerned individuals with OI type 1 (n = 144), type 3 (n = 17) and type 4 (n = 34) (Table 1), with diverse genetic causes of OI. The mean age of this population at time of inclusion was 43,7 years (SD 15,6), with a median of 40 and ranged between 18 and 82 years. (Table 1) Surgery and dental extractions

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