Patient/caregiver perceived benefits and barriers to elective orthopedic surgery (EOS) in patients with congenital hemophilia with inhibitors

Figures & data

Figure 1.  Disposition of recruited subjects. †Includes all subjects who were mailed an informed consent form and subject questionnaire.

Table 1.  Patient demographic and clinical characteristics at enrollment.

Variable	n	M (SD) or %
Patient age	103	20.7 (17.4)
Patient age group	103
1–3 years	4	3.9%
4–7 years	26	25.2%
8–12 years	13	12.6%
13–16 years	13	12.6%
17–24 years	15	14.6%
25–44 years	20	19.4%
45–64 years	9	8.7%
65 + years	3	2.9%
Patient/caregiver employment	100*
Yes	44	44.0%
No	56	56.0%
Household income bracket	78*
<$50 k	36	46.2%
Between $50 k–$100 k	32	41.0%
>$100 k	10	12.8%
Inhibitor level	103
High titer	72	69.9%
Low titer	31	30.1%

*‘No response’s were not included in the total Ns.

Table 2.  Patient characteristics by history of joint surgery (patients aged 15 and greater).

Variable	n	History of joint surgery				p-value
		No		Yes
		n	Col %	n	Col %
Patient age (M, SD)	56	34.2 (3.0)		29.1 (2.9)
Hemophilia type						0.0060
Hemophilia A	48	32	97.0%	16	69.6%
Hemophilia B	8	1	3.0%	7	30.4%
History of ITI therapy						0.0169
No	20	16	48.5%	4	17.4%
Yes	36	17	51.5%	19	82.6%
Receives rFVIII only						0.0187
No	42	21	63.6%	21	91.3%
Yes	14	12	36.4%	2	8.7%
Bleeds per month, in past 3 months (M, SD)	31	3.2 (3.7)		3.3 (3.3)
Currently receives prophylaxis*						0.0333
No	21	16	50.0%	5	21.7%
Yes	34	16	50.0%	18	78.3%

*Prophylaxis could either be episodic or continuous.

Figure 2.  Interest in surgical treatment. Respondents with no history of joint surgery; all ages.

Figure 3.  Rank order of potential benefits of surgery. Respondents with no history of joint surgery; all ages.

Table 3.  Concerns related to joint surgery (respondents with no history of joint surgery; all ages).

I have the following concerns related to joint surgery…	n	% Strongly disagree	% Disagree	% Agree	% Strongly agree	% Don’t know
1. I fear I would have uncontrolled bleeding during the surgery	75	6.7%	20.0%	33.3%	28.0%	12.0%
2. I fear having a complication such as a serious blood clot during surgery	75	5.3%	21.3%	45.3%	14.7%	13.3%
3. I am afraid of post-operative pain	74	4.1%	31.1%	37.8%	16.2%	10.8%
4. I am worried about my out-of-pocket costs	74	8.1%	36.5%	29.7%	14.9%	10.8%
5. I fear that I won’t have any better mobility than I did before the surgery	74	2.7%	24.3%	50.0%	12.2%	10.8%
6. I am worried that I will miss too much work or school	73	8.2%	23.3%	32.9%	26.0%	9.6%
7. I am worried that my family will think that surgery is not a good idea	74	16.2%	44.6%	14.9%	5.4%	18.9%
8. I am worried that my doctor would prefer to not perform the surgery	73	6.9%	39.7%	20.6%	9.6%	23.3%
9. Other	8	12.5%	12.5%	12.5%	62.5%	0.0%