Total self-BAT scores associated with choice of heavy menstrual bleeding treatment.

We performed a cross-sectional survey study. The local institutional review board of Gelre Hospitals confirmed that the Medical Research involving Human Subjects does not apply to this anonymous, observational study. (Reference number: TCO 13.26). Included were all premenopausal women ≥ 18 years and < 53 years of age, who were referred to the peripheral gynecological center of Gelre Hospitals for HMB, The Netherlands between January 2020 and January 2022. Excluded were patients with uterine pathology (e.g. carcinoma, myoma, or endometriosis). The HMB patients were identified through the hospital’s patient administrative system (Dutch diagnosis-and-treatment code G11 R11 N92.0 or N92.6; menstrual cycle disorders, first appointment, menorrhagia or HMB). The selected patients were informed about our study and were asked to participate voluntary in a one-time self-BAT survey through an invitation letter. All participants provided written informed consent by handing back the questionnaires. A formal sample size calculation was not done, since this was a convenience sample of all eligible patients. The paper-based survey was sent to all 650 patients during the first half of 2023. No reminders were sent. Two months after the invitation, we determined the response on the questionnaire and assessed the answers of the returned anonymous questionnaires. Participants were excluded from analysis if they had not fully completed the questionnaire. All self-BAT questionnaires were reviewed, and total and domain-specific scores determined by a gynecologist specializing in bleeding disorders in women (H.P.E) and double-checked by a second clinician, also familiar with bleeding disorders in women (M.C.P). The survey consisted of two sections. Section one collected the patients’ self-reported demographic characteristics and clinical data which included: age (yrs), weight (kg), length (cm), smoking (no/yes), alcohol use (no/yes), sporting > 2 h a week (no/yes), anticoagulant use (no/yes), and positive family history for bleeding disorders (no/yes, if yes which) [ 14 , 15 ]. Section two included the self-BAT tool. The self-BAT questionnaire consists of 14 domains covering epistaxis, cutaneous bleeding, minor cutaneous wounds, hematuria, gastrointestinal bleeding, oral cavity bleeding, tooth extraction, surgical bleeding/major trauma, menorrhagia, postpartum bleeding, muscle hematomas, hemarthrosis, central nervous system bleeding, and one final domain on other bleeding symptoms like bleeding during intercourse [ 13 ]. Each domain scores from 0 (absence of bleeding symptoms) to 4 (symptoms requiring extensive medical intervention), and the overall bleeding score is determined by summing the scores for all domains with a range of 0 till 56 [ 8 ]. This validated self-BAT has cut-off values to define bleeding tendency per age group, defined as, ≥ 5 points in the 18–30 years group, ≥ 6 points in 31–52 years group [ 16 ]. To assess whether an abnormal self-BAT score is associated to treatments, we used a score of 6 as the cut-off level, because a self-BAT score of 6 or greater in females is considered as abnormal [ 10 ]. A free-text section (‘We may not have asked everything you’d like to talk about. You may write down any other problems with bleeding or other things , such as comments on this questionnaire , below’ ) was added to the self-BAT questionnaire to capture a broader perspective and deeper understanding of study participants’ experiences and to elicit their views regarding management for HMB that are important to them.

231 Patients fully completed the questionnaire and were included for analysis (Fig. 1 ). Fig. 1 Flow chart for identifying eligible patients with HMB referred to the gynecological clinic of Gelre Hospitals and invited to fill out the self-BAT questionnaire Flow chart for identifying eligible patients with HMB referred to the gynecological clinic of Gelre Hospitals and invited to fill out the self-BAT questionnaire Table 1 shows the respondent demographics ( n  = 231) (mean [± SD] age, 42 [± 9] yrs). The majority of the respondents had blood group 0 (29%) and the median body mass index (BMI) was 26 (IQR: 24–29). None of the responders used anticoagulants. A family history of bleeding disorders was reported by 2 participants, 1 for VWD (38 yrs, total self-BAT score being 10) and 1 for thalassemia disease carrier (37 yrs, total self-BAT score being 5) (Table 1 ). Three out of the 101 written reflections (3%) mentioned that during diagnostic work-up for HMB they were diagnosed with VWD ( n  = 1), a Factor VII-deficiency (FVII, n  = 1) or carriership of hemophilia ( n  = 1), with total self-BAT scores being 11 (30 yrs); 3 (18 yrs); and 4 (18 yrs), respectively. Table 1 Demographic variables per age group Variable All respondents (n=231) 18-30yrs (n=27) 31-41yrs (n=58) 42-52yrs (n=146) Age, mean (± SD) 42 (± 9) 24 (± 4) 36 (± 3) 47 (± 3) Positive family history bleeding disorder, n (%) 2 (0) 0 (0) 2 (3) 0 (0) Anticoagulant use, n (%) 0 (0) 0 (0) 0 (0) 0 (0) General health All respondents (n=188) 18-30yrs (n=21) 31-41yrs (n=57) 42-52yrs (n=110) Smoking, n (%) 21 (11) 0 (0) 11 (19) 10 (9) Sport >2h/wk, n (%) 107 (57 13 (62) 33 (58) 57 (52) Alcohol <7 unit/wk, n (%) 70 (37) 5 (24) 24 (42) 41 (37) Blood group 0, n (%) 56 (30) 6 (29) 16 (28) 34 (31) BMI kg/m2, median (IQR) 26 (24-29) 26 (23-30) 26 (24- 27) 28 (25-29) SD standard deviation, IQR interquartile range, BMI Body mass index Demographic variables per age group SD standard deviation, IQR interquartile range, BMI Body mass index The total self-BAT scores ranged from 2 to 17 (Table 2 ). The overall prevalence of an abnormal total self-BAT score was 68% (157/231). All self-BAT domains had a median score of 0 across all age groups, the most commonly reported bleeding events were the domains ‘oral cavity’ and ‘menorrhagia’ (Table 2 ). Table 2 Self-BAT scores per age group Self-BAT total score All respondents n=231 18-30yrs n=27 31-41yrs n=58 42-52yrs =146 Self-BAT total, median (range) 6 (2-17) 6 (3-14) 6 (2-17) 6 (2-16) Self-BAT abnormal total score, n (%) 156 (68%) 22 (81%) 44 (76%) >90 (62%) Self-BAT domain score Epistaxis score, median (range) 0 (0-4) 0 (0-3) 0 (0-4) 0 (0-3) Cutaneous score, median (range) 0 (0-2) 0 (0-2) 0 (0-1) 0 (0-1) Bleeding minor wounds score, median (range) 0 (0-3) 0 (0-1) 0 (0-3) 0 (0-3) Oral cavity score, median (range) 1 (0-3) 1 (0-3) 1 (0-1) 1 (0-3) Gastrointestinal bleeding score, median (range) 0 (0-3) 0 (0-3) 0 (0-2) 0 (0-2) Hematuria score, median (range) 0 (0-3) 0 (0-2) 0 (0-2 0 (0-3) Tooth extraction score, median (range) 0 (0-3) 0 (0-3) 0 (0-3) 0 (0-3) Surgery score, median (range) 0 (0-4) 0 (0) 0 (0-3) 0 (0-4) Menorrhagia score, median (range) 3 (1-4) 3 (1-4) 3 (1-4) 4 (1-4) Postpartum hemorrhage score, median (range) 0 (0-3) 0 (0-3) 0 (0-3) 0 (0-3) Muscle hematomas score, median (range) 0 (0-2) 0 (0-2) 0 (0-1) 0 (0-1) Hemarthrosis core, median (range) 0 (0) 0 (0) 0 (0) 0 (0) Central nervous system bleeding score, median (range) 0 (0) 0 (0) 0 (0) 0 (0) Other bleeding symptoms score, median (range) 0 (0-3) 1 (0-2) 1 (0-2) 0 (0-3) Abnormal total self-BAT score per age group: ≥5 points in age (18-30 yrs), ≥6 points in 31-41 yrs) and (42 and 52) Self-BAT scores per age group Abnormal total self-BAT score per age group: ≥5 points in age (18-30 yrs), ≥6 points in 31-41 yrs) and (42 and 52) Medical HMB treatment consisted of tranexamic acid (TXA), iron, hormonal (levonorgestrel devices, oral hormonal treatment) or combined (TXA and hormonal) therapy. (Table 3 on women aged 18-30 yrs and Table 4 on women aged 31-52 yrs). Iron supplementation for HMB was less often prescribed, namely in 16% of women (36/231). However, TXA and iron were more often prescribed in the self-BAT score ≥5 (18-30 yrs) or ≥6 groups (31-52 yrs), albeit not being statistically significant. Many women received hormonal treatment (68/231; 29%). The prevalence of an abnormal self-BAT score in the ‘Hormonal + TXA group’ versus ‘no Hormonal + TXA group’ was statistically significant different between groups <5 or ≥5 (women 18-30 years) (OR 0.11; 95% CI,0.0; 0.9; p=0.04) (Table 3 ). Table 3 HMB treatment in women aged 18-30 years HMB Treatment (n=27) self-BAT <5 n=6 n (%) self-BAT ≥5 n=21 n (%) OR (95% CI) P -value Medical: Hormonal 2 (33) 12 (57) 2.7 (0.4;17.9) 0.31 TXA 1 (17) 3 (14) 0.8 (0.1;9.9) 0.89 Hormonal + TXA 3 (50) 2 (10) 0.1 (0.0;0.9) 0.04 Iron 0 (0) 2 (10) 1.7 (0.1;39.4) 0.75 Surgery: EA 0 (0) 1 (5) 1.0 (0.0;26.3) 0.98 EA + hormonal treatment 0 (0) 0 (0) 0.3 (0.0-16.8) 0.58 Hysterectomy (incl. hysterectomy after EA) 0 (0) 2 (10) 1.7 (0.1-39.4) 0.75 OR Odds ratio, TXA tranexamic acid, EA endometrial ablation *OR reference groups: self-BAT <5 versus self-BAT ≥5 HMB treatment in women aged 18-30 years OR Odds ratio, TXA tranexamic acid, EA endometrial ablation *OR reference groups: self-BAT <5 versus self-BAT ≥5 Surgical HMB treatment consisted of endometrial ablation (EA) or a hysterectomy. Of the 231 included patients, 23 (10%) underwent a hysterectomy of which 20 patients (20/23; 87%) had a self-BAT score ≥6 (total self-BAT score median 7, range 4-14). The prevalence of abnormal self-BAT score did not appear to be associated with EA nor EA plus hormonal therapy (Table 4 ). However, EA ablation was more often performed when the self-BAT score was ≥6. Also, all subsequent hysterectomies after EA (10/92; 11%) were performed in women with a self-BAT score ≥6. Two patients underwent a hysterectomy under the age of 30 years, at respectively 28 years (self-BAT score 7) and 29 years (self-BAT score 6). The prevalence of an abnormal self-BAT score in the ‘hysterectomy plus hysterectomy after EA group’ versus ‘no hysterectomy group’ was statistically significant different between groups with self-BAT scores <6 versus ≥6 (women 31-52 years) (OR 4.3; 95% CI,1.2; 15.3; p=0.02) (Table 4 ). Table 4 HMB treatment in women aged 31-52 years HMB Treatment (N=204) self-BAT <6 n=80 n (total %) self-BAT ≥6 n=124 n (total %) OR* (95% CI) P -value Medical: Hormonal 20 (25) 34 (27) 1.1 (0.6;2.2) 0.70 TXA 4 (5) 8 (6) 1.3 (0.4;4.5) 0.67 Hormonal + TXA 2 (3) 5 (4) 1.6 (0.3;8.7) 0.56 Iron 12 (15) 22 (18) 1.2 (0.6;2.6) 0.61 Surgery: EA 35 (44) 49 (40) 0.8 (0.5;1.5) 0.55 EA + hormonal treatment 4 (5) 3 (2) 0.5 (0.1;2.2) 0.97 Hysterectomy (incl. hysterectomy after EA) 3 (4) 18 (15) 4.3 (1.2;15.3) 0.02 OR Odds ratio, TXA tranexamic acid, EA endometrial ablation, *OR reference groups: self-BAT <6 versus self-BAT ≥6 HMB treatment in women aged 31-52 years OR Odds ratio, TXA tranexamic acid, EA endometrial ablation, *OR reference groups: self-BAT <6 versus self-BAT ≥6 Of the participants, 44% (101/231) provided their reflection in the free-text section of the questionnaire. Most reflections consisted one of the following items: use of the self-BAT, awareness of the impact of heavy blood loss, and the need for patient empowerment. Some reflected on the self-BAT questionnaire. They were satisfied with the self-administration process and completion of the questionnaire improved self-reflection in some cases. As one participant described:  ‘After reading the questionnaire, I also presented it to my grandmother and mother, and they experience the same heavy menstruation and other complaints of blood loss! We looked at each other and realized ‘Could it be hereditary?’ However, most reflections considered low awareness on the impact of heavy blood loss as another participant wrote: ‘I’ve had HMB since my menarche. Now, after years of struggling through anemia, I have had a hysterectomy which is a huge relief. The 15-year period before with trying all kinds of things because, according to the doctors, the uterus had to be spared, has been too long for me versus all the bleeding complaints.’ Or as another participant put it: ‘I continued to have blood loss under levonorgestrel-device use. Finally, after an intake in the gynecological outpatient clinic, the gynecologist had my blood tested. I turned out to have VWD type 1.’ Participants expressed also the need for patient empowerment: ‘I have thalassemia as a carrier. My periods were always very heavy with anemia, but I thought everyone had that. When I started using a menstrual cup, I was able to keep track of how much it was. It turned out that I had more than 250cc of blood loss every week.’ Or as another participant put it:  ‘After more or less permanent continuous blood loss the endometrium ablation procedure turned out to be the ideal solution. I should have known and done it much earlier. I am glad that more attention is now being paid to HMB and (bleeding) problems that can occur with it.’

Our findings imply that there is a substantial group of patients with HMB who experience a bleeding tendency according to self-BAT measurement. This bleeding tendency may influence the choice of HMB treatment like a hysterectomy over more minimal invasive treatments. Implementing structured bleeding assessment tools could guide optimal diagnostics and treatment for women with HMB.

The current study reflects the raised concerns that in women who underwent a hysterectomy an underlying bleeding tendency is more prevalent [ 5 ]. Therefore, thoughtful and structured bleeding assessment during HMB work-up should be implemented to timely diagnose this disorder and prevent needless hysterectomy [ 5 , 17 ]. With application of BATs being an important protective factor for missing bleeding tendencies, the role of educating gynecologist and patients to use the self-BAT screening tool and to incorporate it in the HMB work-up to increase awareness on underlying bleeding disorders in patients with HMB is crucial [ 10 ]. In the study from the online awareness project ‘Let's Talk Period!’(www.letstalkperiod.ca) to increase awareness of the signs and symptoms of bleeding disorders, 44% of the general public responders have a self-BAT scores above the cut-off levels [ 18 ]. Both hormonal therapy and TXA are effective in reducing the mean blood loss among women with HMB, especially in younger age groups [ 19 ]. Also in this study, the common approach to treatment of HMB is hormonal therapy [ 20 ] alone or combined with TXA [ 21 ]. Due to this common approach the prevalence of abnormal self-BAT scores did not appear to be associated with hormonal or TXA therapy in our study. In women aged 18-30 years hormonal + TXA therapy was even significantly more frequently prescribed in the normal self-BAT group. However, underlying bleeding disorders should be ruled out before prescribing medical therapy to optimize treatment [ 22 , 23 ]. Iron supplements were not frequently prescribed in our population (36/231, 16%). This finding was not entirely unexpected, as this treatment has a poor compliance due to constipation or nausea [ 24 ]. Nevertheless, screening for iron deficiency in women with HMB should be standard care due the impact on quality of life [ 25 ]. Endometrial ablation offers an alternative to hysterectomy as a surgical treatment for HMB [ 26 ]. Although hysterectomy offers permanent relief from HMB [ 26 ] subsequent hysterectomy after EA is around 7% [ 27 ]. Our results show a link between abnormal self-BAT scores and hysterectomies or hysterectomies after EA. Literature describes that woman with moderate or severe VWD leads to hysterectomy due to HMB in 20% of cases [ 5 ]. During the diagnostic work up of HMB hormonal dysregulation, uterine pathology like polyps, myoma, adenomyosis should, of course, be investigated besides bleeding tendency [ 28 , 29 ]. Nowadays, intrauterine pathology can efficacy been ruled out combining diagnostic and therapeutic resectoscopes [ 30 ]. Additionally, bleeding patterns during the menopausal transition can be prolonged due to increased body mass index (BMI). Our study data showed also a slightly increased BMI in the in women aged 42-52 years with a median of 28 compared to 26 in the lower age categories. HMB has a profound effect on the quality of life due to the severe bleedings [ 27 , 31 ]. In accordance with prior research, our respondents indicated a lack of awareness and delay in diagnosis of underlying bleeding tendency in patients with HMB and plead for improving patient empowerment [ 22 , 32 – 34 ]. Parker et al., interviewed adolescents who describe the burden HMB gives on their identities and social quality of life, causing stress, anxiety and feelings of being ‘left out’ [ 33 ]. Given the greater impact HMB has on the quality of life of (young) women, obtaining an accurate and timely diagnosis can lead to identity building and empowerment [ 22 ]. The strength of this study was response rate of 36% which is, to our knowledge, a response rate that is considerably higher than in previous studies in adults with HMB (9–26%) [ 16 ]. Secondly, we also included a free-text section to gain insights into participants’ personal experiences with HMB health care. This study also has some limitations. We only had information on anonymous data collections of the study, so measurement of non-responders outcomes were not available. In addition, the cross-sectional nature of the study design and the relatively small sample size of 231 participants might have biased the observed associations. Further, as frequently occurs in qualitative studies [ 35 ], our study design relied on self-reporting, which may be prone to selection bias or social desirability bias, leading to overestimation of bleeding tendency in our data. Additionally, age groups (18-30, 31-41, 42-52) were rather broad and possibly included persons in different life stages, characterized by different stressors and biological processes [ 36 – 38 ]. Implications of this study concern informing clinicians and patients about different outcomes following surgical HMB treatment in context of bleeding tendency. If supported by future evidence, the results of our and other recent studies [ 39 ] could be utilized for organizing diagnostic work up care to recognize bleeding disorders in women, for instance scheduling earlier or more frequent appointments for women with (history of) bleeding tendencies at the gynecological outpatient clinic. Furthermore, other potential interdisciplinary communications mechanism should be measured and explored in upcoming research to reduce delays of diagnosis bleeding disorders in women. For future research and clinical care, we suggest that adding a free-text section to the self-BAT questionnaire allows respondents to reflect on their treatment and to encourage patient empowerment. Lastly, we suggest further evaluation of the optimal self-BAT cut-off levels per age group in women with HMB. An evaluation of the self-BAT questionnaire incorporated in daily practice can increase awareness of underlying bleeding disorders in patients with HMB among gynecologists.

Data were collected anonymized and entered into an IBM SPSS statistics version 29 (IBM Corp., Armonk, New York, United States) dataset for statistical analysis. For the self-BAT scores: median scores, interquartile range (IQR, 25–75%) and frequencies for distribution were calculated. Due to unequally distributed data and some small sample sizes per group, presented P values were derived from χ2 test or Fisher exact test with 95% confidence intervals (CI). Continuous variables are reported with numbers (%) or depending on the distribution as a mean ± standard deviation (± SD) or median with IQR. Outcomes of logistic regression analysis are used to estimate the linear combination of self-BAT outcome and medical or surgical treatment outcome for HMB, reported as odds ratio (OR) and 95% confidence interval (CI). A p-value of less than 0.05 was considered statistically significant. Open answers were independently categorized by two authors (H.P.E. and M.C.P), and subsequently analyzed by an independent assessor (E.G.). Any disagreement was discussed until consensus was achieved.

Heavy menstrual bleeding (HMB) defined as menstruation at regular intervals, but with excessive flow and duration can be the first symptom of a bleeding tendency and various bleeding disorders [ 1 – 3 ]. Von Willebrand disease (VWD) type 1 is one of the most common inherited bleeding disorders with a prevalence ranging from 5% to 24% in patients with HMB [ 4 ]. A bleeding tendency can also contribute to excessive or prolonged bleeding during childbirth, trauma or surgery and a higher chance that these women need blood transfusions compared to those without a bleeding tendency or bleeding disorder [ 2 , 5 ]. Women with a bleeding tendency or underlying bleeding disorder may experience various bleeding symptoms in addition to HMB, with which women may present at the outpatient clinic [ 6 ]. The etiology of HMB can be diverse and the cause of HMB (e.g. bleeding tendency, hormonal dysregulation and/or uterine pathology) should be investigated first. An overall bleeding history besides a obstetrical-gynecological history is an important factor in reducing diagnostic delay in bleeding disorders and could be crucial in optimizing HMB management [ 7 – 11 ]. A possible strategy to aid gynecologists in consistent bleeding history assessment could be the self-administered bleeding assessment tool (self-BAT) [ 12 ]. Since its introduction in 2015, the self-BAT is gaining interest as a screening tool during the diagnostic work-up of patients to distinguish between normal and abnormal bleeding [ 13 ]. The aim of our study was to investigate the prevalence of the total and domain-specific self-BAT scores among patients with HMB, and to describe if there is an association with the total self-BAT scores and choice of HMB treatment. Furthermore, we explored the patients’ perspectives on HMB management in free-text responses.