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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

Agnes Kisakye
Agnes Kisakye
, 
Phillip Gitah Kasirye
Phillip Gitah Kasirye
, 
Dan Muramuzi
Dan Muramuzi
, 
Daniel Opuch
Daniel Opuch
, 
Joan Nampiima
Joan Nampiima
, 
Grace Ndeezi
Grace Ndeezi
, 
Adoke Yeka
Adoke Yeka
 und 
Horatiu Vultur
Horatiu Vultur
   | 17. Dez. 2023
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Article Category: Clinical Research
Online veröffentlicht: 17. Dez. 2023
Seitenbereich: 106 - 118
DOI: https://doi.org/10.2478/jhp-2023-0018
Schlüsselwörter
© 2023 Agnes Kisakye et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.

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

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 – –
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