Mild-severe hemophilia B impacts relationships of US adults and children with hemophilia B and their families: results from the B-HERO-S study

Figures & data

Figure 1 Adults with hemophilia B: impact of hemophilia on relationships.

Table 1 Respondent demographics and characteristics

	Adults with hemophilia B n=299	Caregivers n=150
Sex, n (%)
Male	213 (71)	34 (23)
Female	86 (29)	116 (77)
Age, median (Q1, Q3), years	29 (18, 70)	35 (21, 53)
Marital status, n (%)
Married	131 (44)	123 (82)
Long-term relationship	31 (10)	11 (7)
Divorced/separated	5 (2)	14 (9)
Single	131 (44)	1 (1)
Widower	1 (0)	0 (0)
Living situation, n (%)
Alone	60 (20)	3 (2)
With spouse/partner (with or without own children)	148 (49)	132 (88)
With other family members	84 (28)	29 (19)
With others (non-family)	9 (3)	1 (1)
Children, n (%)
Have children of their own	45 (15)	150 (100)
Do not have children of their own	253 (85)	0 (0)
Number of children, mean (median)^a
Boys	0.84 (1)	NC
Girls	0.58 (1)	NC
Desire to have children (if none reported now), n (%)
Want to have children in the future	161 (63)	–
Do not want to have children in the future	88 (35)	–
Desire to have additional children (if children reported now), n (%)
Want to have children in the future	6 (13)	57 (38)
Do not want to have children in the future	37 (82)	82 (55)

Note: ^aOf those who reported having children of their own (n=45).

Abbreviation: NC, not collected.

Figure 2 Adults with hemophilia B: degree of satisfaction with support regarding hemophilia.

Figure 3 Adults with hemophilia B: reasons for satisfaction with current partner.

Figure 4 Adults with hemophilia B: experience with disclosing hemophilia to friends/colleagues and the impact on current relationships and approaches to disclosure.

Figure 5 Caregivers: impact of child’s hemophilia on his/her unaffected siblings.

Figure 6 Caregivers: degree of satisfaction with support regarding their child’s hemophilia.

Table 2 Caregivers: reasons for dissatisfaction with relationships

	Adults in regular contact	Teachers at school	Other children at school
They are overprotective and do not allow him to do activities that he should be allowed to do, %	59	0	73
They do not know enough about hemophilia, %	56	100	50
They will not help him if he has a bleed, %	41	0	23
They treat him differently, %	24	25	27
They do not know how to help him if he has a bleed, %	0	50	0
They lack training, %	7	50	5
They do not prevent him from doing risky activities, %	2	50	5
He does not feel at ease with them, %	0	25	5

Figure S1 Caregivers: impact on siblings.

Table S1 Adults with hemophilia B and caregivers: awareness among social contacts of respondents’ hemophilia or respondents’ children’s hemophilia

	Awareness of hemophilia
	None of them know	Only one or two know	A select few know	Most of them know	All of them know
Social contacts of adults with hemophilia B, %
Friends	1	18	28	38	15
Colleagues	5	10	22	52	10
Employer/manager	3	14	25	47	12
Neighbors	7	14	28	46	5
Other contacts	5	12	41	39	4
Facebook/social media	4	11	44	38	3
Social contacts of children with hemophilia B, %
His friends	3	15	29	25	27
Children at school	13	15	15	45	13
Teachers	9	10	22	31	29
Neighbors	8	13	34	34	11
Adult contacts	1	5	43	37	13
Facebook/social media	12	12	48	24	4