Factors associated with delays in seeking treatment for acute bleeding among persons living with haemophilia in Uganda: a cross-sectional mixed methods study

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Figure 2.

Figure 3.

Figure 4.

Multivariable analysis of factors associated with delay in seeking treatment for acute bleeding among people with haemophilia attending haemophilia treatment centres in Uganda

CHARACTERISTICS	DELAY	NO DELAY	CRUDE PR†	APR†	P-VALUE
Mode of transportation to HTC
Motorcycle	54 (68.3)	25 (31.7)	(ref)	(ref)
Private/Family car	10 (76.9)	3 (23.1)	1.13 (0.75-1.69)	1.17 (0.85-1.58)	0.331
Public means	129(97.7)	3 (2.3)	1.43 (1.00-2.04)	1.39 (1.22-1.59)	<0.001
Did you take immediate action on the realisation of a sign of an acute bleed to seek treatment?
No	129(97.0)	4 (3.0)	(ref)	(ref)
Yes	64 (70.3)	27 (29.7)	0.73 (0.56-0.94)	0.75 (0.66-0.84)	<0.001*

Characteristics of people with haemophilia participating in the study (n=224)

CHARACTERISTICS	FREQUENCY (N)	PERCENTAGE (%)
Residence
Rural	142	63.4
Urban	82	36.6
Education
None	34	15.2
Primary	135	60.3
Secondary and above	55	24.5
Religion
Anglican/Protestant	62	27.7
Catholic	92	41.1
Muslim	37	16.5
Pentecostal (Born Again)	23	10.3
Seventh Day Adventist	10	4.5
Age
1-4 years	36	16.1
5-13 years	106	47.3
14-18 years	38	17.0
19 years and above	44	19.6
Employment
Child	22	9.8
Student	40	17.9
Formally employed	35	15.6
Self-employed	76	33.9
Unemployed	51	22.8
Average family income per month (UGX)
500,001 and above	11	4.9
300,001-500,000	13	5.8
200,001-300,000	26	11.6
100,001-200,000	30	13.4
Less than 100,000	144	64.3
Time travelling to HTC
1 hour	77	34.4
2 hours	60	26.8
3 or more hours	87	38.8
Mode of transportation to HTC
Motorcycle	78	34.8
Private/Family car	14	6.2
Public means (taxi)	132	58.9
Who do you live with?
Parents/guardian/caregiver	203	90.6
Independent	21	9.4

Clinical and health system factors associated with delay in seeking treatment for acute bleeding at a haemophilia treatment centre among people with haemophilia in Uganda (n=193)

CHARACTERISTICS	PARTICIPANTS N(%)	DELAY CRUDE PR†	P VALUE	ADJUSTED PR†	P VALUE
Haemophilia type
Haemophilia A	166 (86.5)	(ref)	–	–	–
Haemophilia B	27 (84.4)	1.15 (0.75-0.47)	0.75	–	–
Haemophilia severity
Mild	10 (83.3)	(ref)		–	–
Moderate	60 (81.1)	1.13 (0.29-4.39)	0.85	–	–
Severe	123 (89.1)	0.65 (0.16-2.52)	0.53	–	–
Time since haemophilia diagnosis
1 year or less	36 (75.0)	(ref)		–	–
2-5 years	64 (88.9)	2.25 (0.99-5.10)	0.05*	–	–
>5 years	93 (89.4)	0.95 (0.40-2.25)	0.91	–	–
No. of siblings with haemophilia
One	90 (85.7)	(ref)		–	–
Two-three	69 (88.5)	0.80 (0.37-1.75)	0.58	–	–
Four/more	34 (82.9)	1.19 (0.52-2.72)	0.67	–	–
Siblings lost due to haemophilia
Yes	133 (85.8)	(ref)		–	–
No	60 (87.0)	1.01 (0.88-1.17)	0.85	–	–
Family support
Less supportive	69 (94.5)	(ref)		–	–
Highly supportive	67 (89.3)	1.94 (0.61-6.20)	0.260	–	–
Less supportive	57 (75.0)	4.56 (1.62-12.79)	0.004*	–	–
Number of times you experience acute bleeds in a month
0-1 times	68 (85.0)	(ref)		–	–
2-3 times	111 (93.3)	0.45 (0.18-1.10)	0.082*	–	–
More than 3 times	14 (56.0)	2.38 (1.16-4.91)	0.018*	–	–
Time of realising an acute bleeding episode
Morning (6am-12pm)	137 (84.6)	(ref)		–	–
Evening (1pm-6pm)	39 (86.7)	0.99 (0.43-2.27)	0.991	–	–
Night (7pm-5am)	17 (100.0)	7.71 (4.00-1.48)	<0.001*	–	–
Did you take immediate action on realisation of a sign of an acute bleed to seek treatment?
Yes	64 (97.0)	(ref)		(ref)
No	129 (70.3)	0.10 (0.03-0.28)	<0.001*	0.75 (0.66-0.84)	<0.001*
Opinion of services provided at HTC
Fair	83 (84.7)	(ref)		–	–
Good	87 (86.1)	1.11 (0.16-7.39)	0.912	–	–
Very good	23 (92.0)	1.10 ( 0.16-7.42)	0.915	–	–
Previous waiting time for treatment at HTC
1 hour	136 (90.1)	(ref)		–	–
2 hours	31 (77.5)	2.26 (1.06-4.79)	0.033*	–	–
3 or more hours	26 (78.8)	2.13 (0.94-4.82)	0.068*	–	–
Attitude of HCPs about care for acute bleeds at HTC
Not good	107 (87.0)	(ref)		–	–
Fairly good	4 (50.0)	0.26 (0.11-0.59)	0.002*	–	–
Very good	82 (88.2)	0.23 (0.10-0.57)	0.001*	–	–
Do you think haemophilia is curable?
No	181 (86.6)	(ref)		–	–
Yes	12 (80.0)	1.49 (0.51-4.35)	0.464	–	–

Bivariate analysis of sociodemographic characteristics associated with delay in seeking of treatment for acute bleeding at a haemophilia treatment centre among people with haemophilia in Uganda (n=193)

CHARACTERISTIC	DELAYED (N=193) N (%)	CRUDE PR (95%CI)	P-VALUE	ADJUSTED PR (95%CI)	P-VALUE
Place of residence
Rural	121 (85.2)	(ref)		–	–
Urban	72 (87.8)	0.82 (0.40-1.66)	0.591	–	–
Level of education
Tertiary	31 (91.2)	(ref)		–	–
Primary	111 (82.2)	2.01 (0.64-6.31)	0.22	–	–
Secondary	31 (88.6)	1.29 (0.31-5.37)	0.72	–	–
None	20 (100.0)	4.48 (1.39-1.44)	0.000*	–	–
Religion
Anglican/Protestant	53 (85.5)	(ref)		–	–
Catholic	78 (84.8)	1.04 (0.48-2.27)	0.905	–	–
Muslim	32 (86.5)	0.9 (0.33-2.57)	0.89	–	–
Pentecostal (Born Again)	20 (87.0)	0.89 (0.26-3.03)	0.86	–	–
Seventh Day Adventist	10 (100.0)	3.96 (1.66-9.43)	0.000*	–	–
Age
1-4 years	30 (83.3)	(ref)		–	–
5-13 years	93 (87.7)	0.73 (0.30-1.79)	0.50	–	–
14-18 years	29 (76.3)	1.42 (0.56-3.59)	0.45	–	–
19 & above	41 (93.2)	0.41 (0.11-1.53)	0.18	–	–
Employment status
Child	20 (10.36)	(ref)		–	–
Formally employed	29 (15.03)	1.88 (0.41-8.55)	0.41	–	–
Self-employed	70 (36.27)	0.86 (0.18-4.01)	0.85	–	–
Student	31 (16.06)	2.47 (0.58-10.49)	0.21	–	–
Unemployed	43 (22.28)	1.72 (0.64-1.10)	0.46	–	–
Average family income per month (UGX)
500,001 and more	23 (76.7)	(ref)		–	–
300,001-500,000	25 (96.1)	0.28 (0.03-2.35)	0.24	–	–
200,001-300,000	12 (92.3)	0.14 (0.01-1.21)	0.07	–	–
100,001-200,000	8 (72.7)	0.85 (0.26-2.74)	0.79	–	–
Less than 100,000	125 (86.8)	0.48 (0.16-1.38)	0.17	–	–
Mode of transportation to HTC
Motor cycle	54 (68.3)	(ref)		(ref)
Private/Family car	10 (76.9)	0.56 (0.15-2.06)	0.390	1.17 (0.85-1.58)	0.331
Public means	129 (97.7)	0.70 (0.02-0.22)	<0.001*	1.39 (1.22-1.59)	<0.001
Who do you live with?
Parent/Guardian	173 (85.2)	(ref)		–	–
Independent	20 (95.2)	0.32 (0.04-2.25)	0.25	–	–