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

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

Open Access
|Dec 2023

Figures & Tables

A study among people with haemophilia presenting at five regional treatment centres across Uganda found transport costs is a major issue impacting treatment seeking for acute bleeds
A study among people with haemophilia presenting at five regional treatment centres across Uganda found transport costs is a major issue impacting treatment seeking for acute bleeds

Figure 1.

Types of acute bleeding for which people with haemophilia in Uganda attended a haemophilia treatment centre (n=224)
Types of acute bleeding for which people with haemophilia in Uganda attended a haemophilia treatment centre (n=224)

Figure 2.

Awareness among people with haemophilia in Uganda of signs and symptoms of acute bleeding (n=224)
Awareness among people with haemophilia in Uganda of signs and symptoms of acute bleeding (n=224)

Figure 3.

Knowledge and beliefs among people with haemophilia in Uganda on what treatments can be used to stop bleeding (n=224)
Knowledge and beliefs among people with haemophilia in Uganda on what treatments can be used to stop bleeding (n=224)

Figure 4.

Obstacles to seeking treatment for an acute bleeding episode at a haemophilia treatment centre among people with haemophilia in Uganda (n=224)
Note: In some cases, more that one obstacle to treatment seeking was relevant to an individual participant
Obstacles to seeking treatment for an acute bleeding episode at a haemophilia treatment centre among people with haemophilia in Uganda (n=224) Note: In some cases, more that one obstacle to treatment seeking was relevant to an individual participant

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

CHARACTERISTICSDELAYNO DELAYCRUDE PRAPRP-VALUE
Mode of transportation to HTC
Motorcycle54 (68.3)25 (31.7)(ref)(ref) 
Private/Family car10 (76.9)3 (23.1)1.13 (0.75-1.69)1.17 (0.85-1.58)0.331
Public means129(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?
No129(97.0)4 (3.0)(ref)(ref) 
Yes64 (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)

CHARACTERISTICSFREQUENCY (N)PERCENTAGE (%)
Residence
Rural14263.4
Urban8236.6
Education
None3415.2
Primary13560.3
Secondary and above5524.5
Religion
Anglican/Protestant6227.7
Catholic9241.1
Muslim3716.5
Pentecostal (Born Again)2310.3
Seventh Day Adventist104.5
Age
1-4 years3616.1
5-13 years10647.3
14-18 years3817.0
19 years and above4419.6
Employment
Child229.8
Student4017.9
Formally employed3515.6
Self-employed7633.9
Unemployed5122.8
Average family income per month (UGX)
500,001 and above114.9
300,001-500,000135.8
200,001-300,0002611.6
100,001-200,0003013.4
Less than 100,00014464.3
Time travelling to HTC
1 hour7734.4
2 hours6026.8
3 or more hours8738.8
Mode of transportation to HTC
Motorcycle7834.8
Private/Family car146.2
Public means (taxi)13258.9
Who do you live with?
Parents/guardian/caregiver20390.6
Independent219.4

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)

CHARACTERISTICSPARTICIPANTS N(%)DELAY CRUDE PRP VALUEADJUSTED PRP VALUE
Haemophilia type
Haemophilia A166 (86.5)(ref)
Haemophilia B27 (84.4)1.15 (0.75-0.47)0.75
Haemophilia severity
Mild10 (83.3)(ref) 
Moderate60 (81.1)1.13 (0.29-4.39)0.85
Severe123 (89.1)0.65 (0.16-2.52)0.53
Time since haemophilia diagnosis
1 year or less36 (75.0)(ref) 
2-5 years64 (88.9)2.25 (0.99-5.10)0.05*
>5 years93 (89.4)0.95 (0.40-2.25)0.91
No. of siblings with haemophilia
One90 (85.7)(ref) 
Two-three69 (88.5)0.80 (0.37-1.75)0.58
Four/more34 (82.9)1.19 (0.52-2.72)0.67
Siblings lost due to haemophilia
Yes133 (85.8)(ref) 
No60 (87.0)1.01 (0.88-1.17)0.85
Family support
Less supportive69 (94.5)(ref) 
Highly supportive67 (89.3)1.94 (0.61-6.20)0.260
Less supportive57 (75.0)4.56 (1.62-12.79)0.004*
Number of times you experience acute bleeds in a month
0-1 times68 (85.0)(ref) 
2-3 times111 (93.3)0.45 (0.18-1.10)0.082*
More than 3 times14 (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?
Yes64 (97.0)(ref) (ref) 
No129 (70.3)0.10 (0.03-0.28)<0.001*0.75 (0.66-0.84)<0.001*
Opinion of services provided at HTC
Fair83 (84.7)(ref) 
Good87 (86.1)1.11 (0.16-7.39)0.912
Very good23 (92.0)1.10 ( 0.16-7.42)0.915
Previous waiting time for treatment at HTC
1 hour136 (90.1)(ref) 
2 hours31 (77.5)2.26 (1.06-4.79)0.033*
3 or more hours26 (78.8)2.13 (0.94-4.82)0.068*
Attitude of HCPs about care for acute bleeds at HTC
Not good107 (87.0)(ref) 
Fairly good4 (50.0)0.26 (0.11-0.59)0.002*
Very good82 (88.2)0.23 (0.10-0.57)0.001*
Do you think haemophilia is curable?
No181 (86.6)(ref) 
Yes12 (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)

CHARACTERISTICDELAYED (N=193) N (%)CRUDE PR (95%CI)P-VALUEADJUSTED PR (95%CI)P-VALUE
Place of residence
Rural121 (85.2)(ref) 
Urban72 (87.8)0.82 (0.40-1.66)0.591
Level of education
Tertiary31 (91.2)(ref) 
Primary111 (82.2)2.01 (0.64-6.31)0.22
Secondary31 (88.6)1.29 (0.31-5.37)0.72
None20 (100.0)4.48 (1.39-1.44)0.000*
Religion
Anglican/Protestant53 (85.5)(ref) 
Catholic78 (84.8)1.04 (0.48-2.27)0.905
Muslim32 (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 Adventist10 (100.0)3.96 (1.66-9.43)0.000*
Age
1-4 years30 (83.3)(ref) 
5-13 years93 (87.7)0.73 (0.30-1.79)0.50
14-18 years29 (76.3)1.42 (0.56-3.59)0.45
19 & above41 (93.2)0.41 (0.11-1.53)0.18
Employment status
Child20 (10.36)(ref) 
Formally employed29 (15.03)1.88 (0.41-8.55)0.41
Self-employed70 (36.27)0.86 (0.18-4.01)0.85
Student31 (16.06)2.47 (0.58-10.49)0.21
Unemployed43 (22.28)1.72 (0.64-1.10)0.46
Average family income per month (UGX)
500,001 and more23 (76.7)(ref) 
300,001-500,00025 (96.1)0.28 (0.03-2.35)0.24
200,001-300,00012 (92.3)0.14 (0.01-1.21)0.07
100,001-200,0008 (72.7)0.85 (0.26-2.74)0.79
Less than 100,000125 (86.8)0.48 (0.16-1.38)0.17
Mode of transportation to HTC
Motor cycle54 (68.3)(ref) (ref) 
Private/Family car10 (76.9)0.56 (0.15-2.06)0.3901.17 (0.85-1.58)0.331
Public means129 (97.7)0.70 (0.02-0.22)<0.001*1.39 (1.22-1.59)<0.001
Who do you live with?
Parent/Guardian173 (85.2)(ref) 
Independent20 (95.2)0.32 (0.04-2.25)0.25
Language: English
Page range: 106 - 118
Published on: Dec 17, 2023
Published by: Haemnet Ltd
In partnership with: Paradigm Publishing Services
Publication frequency: 1 issue per year

© 2023 Agnes Kisakye, Phillip Gitah Kasirye, Dan Muramuzi, Daniel Opuch, Joan Nampiima, Grace Ndeezi, Adoke Yeka, Horatiu Vultur, published by Haemnet Ltd
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.