Respondent characteristics
231 Patients fully completed the questionnaire and were included for analysis (Figure 1).
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)
|
42-51yrs
(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)
|
Legend: SD, standard deviation; IQR, interquartile range, BMI; Body mass index
|
Total and domain-specific self-BAT scores
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
n=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 score, 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)
|
Legend: Abnormal total self-BAT score per age group: ≥5 points in age (19-30 yrs), ≥6 points in 31-40 yrs) and (41 and 52)
|
Self-BAT scores per HMB treatment outcome
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
|
Legend: OR, Odds ratio; TXA; tranexamic acid, EA; endometrial ablation, *OR referencegroups: 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
|
Legend: OR, Odds ratio; TXA; tranexamic acid, EA; endometrial ablation, *OR referencegroups: self-BAT <6 versus self-BAT ≥6
|
Respondents’ views on HMB management
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.’