
Figure 1
Study Flow Diagram.
Table 1
Socio-demographic characteristics of the participants.
| VARIABLE (N = 83) | N(%) |
|---|---|
| Age, mean (SD), years | 18.5(4.5) |
| <19 | 42(50.6) |
| > = 19 | 41(49.4) |
| Weight, mean (SD), kg | 51.9(11.3) |
| Height, mean (SD), cm | 158.6(8.6) |
| Gender | |
| Female | 49(59) |
| Male | 34(41) |
| Level of education | |
| Pre–primary | 4(4.8) |
| Primary | 36(43.4) |
| Secondary | 39(47) |
| None | 4(4.8) |
| SPO2, median (IQR), percentage | 99(96–100) |
| Heart rate, mean (SD), BPM | 84.5(10.8) |
| Duration of heart disease from 1st diagnosis, median (IQR), years | 6(2–25) |
| Duration from surgery, median (IQR), years | 4(2–6) |
| Time to surgery from initial diagnosis, median (IQR) years | 2(1–4.8) |
| Underweight (below 18.5) | 26(31.3) |
| Normal weight (18.5–24.9) | 46(55.4) |
| Overweight (25.0–29.9) | 9(10.8) |
| Obese (30.0 and above) | 2(2.4) |
| Country of surgery | |
| India | 2(2.5) |
| Uganda | 6(7.5) |
| Sudan | 71(88.8) |
| Type of valve replacement surgery | |
| Single valve | 58(71.6) |
| Double valve | 23(28.4) |
| Age at surgery (years) | 14(7–18) |
Table 2
The feelings of the participant about warfarin use and regular blood testing (PT/INR).
| VARIABLE (N = 83) | DEFINITELY TRUE | MOSTLY TRUE | NOT SURE | MOSTLY FALSE | DEFINITELY FALSE |
|---|---|---|---|---|---|
| Taking warfarin | |||||
| I don’t mind taking warfarin | 45(54.2) | 0(0) | 0(0) | 0(0) | 38(45.8) |
| I can’t always be bothered taking my tabs | 21(25.3) | 0(0) | 0(0) | 0(0) | 62(74.7) |
| It interferes with my social life | 15(18.1) | 1(1.2) | 0(0) | 1(1.2) | 66(79.5) |
| I don’t fully understand why I have to take them | 4(5) | 0(0) | 3(3.8) | 3(.3.8) | 70(85.5) |
| I simply forget | 7(8.5) | 1(1.2) | 2(2.4) | 3(3.7) | 69(84.2) |
| I am afraid I may get a bleed or bruise | 24(29.3) | 1(1.2) | 1(1.2) | 3(3.7) | 53(64.6) |
| I don’t want my friends/colleagues to know I have an artificial valve | 35(42.2) | 1(1.2) | 0(0) | 0(0) | 47(56.6) |
| DOING REGULAR BLOOD TESTS | |||||
| I don’t mind having regular blood tests | 44(53) | 0(0) | 0(0) | 1(1.2) | 38(45.8) |
| The tests are painful | 40(48.2) | 0(0) | 2(2.4) | 2(2.4) | 39(47) |
| It interferes with my daily life | 17(20.5) | 0(0) | 2(2.4) | 1(1.2) | 63(75.9) |
| I don’t understand why I have to have them | 8(9.6) | 0(0) | 2(2.4) | 1(1.2) | 72(86.8) |
| It is expensive for me (I can’t afford it) | 41(50) | 1(1.2) | 2(2.4) | 0(0) | 38(46.3) |
Table 3
Health-related quality of life for all participants in the study.
| DIMENSION | MEAN (SD) |
|---|---|
| Heart Problems and Treatment | 85.1 (14.2) |
| Treatment Barriers | 91.1 (14.8) |
| Perceived Physical Appearance | 55.8 (41.8) |
| Treatment Anxiety | 90.4 (20.5) |
| Cognitive Problems | 90.6 (15.1) |
| Communication | 87.5 (22.4) |
| Health-Related Quality of Life, Total Score | 83.4 (12.9) |
| Health-Related Quality of Life, classification | Freq (%) |
| Optimal | 50(60.2) |
| Sub-optimal | 29(34.9) |
| Poor | 4(4.8) |
[i] Optimal mean HRQoL score ≥ 80%, Sub optimal ≥ 70% – ≤80% and poor HRQoL ≤ 70%.
Table 4a
Socio-demographic factors associated with optimal health-related quality of life of the participants at bivariate analysis.
| VARIABLE | ALL (N = 83) FREQ (%) | HEALTH RELATED QUALITY OF LIFE (TOTAL SCORE) | P-VALUE | ||
|---|---|---|---|---|---|
| OPTIMAL (N = 50) FREQ (%) | SUB OPTIMAL (N = 29) FREQ (%) | POOR (N = 4) FREQ (%) | |||
| Age, mean (SD), years | 18.5(4.5) | 18.2(4.7) | 18.7(4.3) | 19(2.7) | 0.536 |
| <19 | 42(50.6) | 25(50) | 14(48.3) | 3(75) | 0.600 |
| >19 | 41(49.4) | 25(50) | 15(51.7) | 1(25) | |
| Weight, mean (SD), kg | 51.9(11.3) | 49.4(11.3) | 56.5(10.7) | 50.8(7.1) | 0.630 |
| Height, mean (SD), cm | 158.6(8.6) | 158.3(8.8) | 159.5(8.8) | 156(7.1) | 0.902 |
| Sex | |||||
| Female | 49(59) | 26(52) | 20(69) | 3(75) | 0.269 |
| Male | 34(41) | 24(48) | 9(31) | 1(25) | |
| Level of education | |||||
| Pre–primary | 4(4.8) | 4(8) | 0(0) | 0(0) | 0.344 |
| Primary | 36(43.4) | 19(38) | 090) | 0(0) | |
| Secondary | 39(47) | 23(46) | 14(48.3) | 3(75) | |
| None | 4(4.8) | 4(8) | 15(51.72) | 1(25) | |
| Duration of heart disease from 1st diagnosis, median (IQR) years | 6(2–25) | 11.5(8.8–15) | 11(7–15.5) | 14.5(11–18) | 0.341 |
| Duration from surgery, median (IQR), years | 4(2–6) | 4(2–6) | 4(3–6.5) | 3(1–5.8) | 0.313 |
| Time to surgery, median (IQR) | 2(1–4.8) | 2(1–4) | 2(0.8–5) | 2(0–3) | 0.604 |
| Body mass index (BMI), median (IQR) | 20.1(12.7–31.6) | 19(12.7–27.7) | 20.7(16.9–31.6) | 19.4(18.1–27.1) | 0.008 |
| Underweight (BMI<18.5) | 26(31.3) | 21(42) | 4(13.8) | 1(25( | 0.044 |
| Normal weight (18.5–24.9) | 46(55.4) | 25(50) | 19(65.5) | 2(50) | |
| Overweight (25.0–29.9) | 9(10.8) | 4(8) | 4(13.8) | 1(25) | |
| Obese (≥30.0) | 2(2.4) | 0(0) | 2(6.9) | 0(0) | |
| Country | |||||
| India | 2(2.5) | 1(2) | 1(3.7) | 0(0) | 0.837 |
| Uganda | 6(7.5) | 5(10.3) | 1(3.7) | 0(0) | |
| Sudan | 71(88.8) | 42(85.7) | 25(92.6) | 4(100) | |
| Valve replacement | |||||
| Single valve | 58(28.4) | 35(72.9) | 20(69) | 3(75) | 0.922 |
| Double valve | 23(71.6) | 13(27.1) | 9(31) | 1(25) | |
| Age of the surgery (IQR), years | 14(7–18) | 13.5(8–18) | 7(3–20) | 17(11–18) | 0.120 |
Table 4b
Socio-demographic factors associated with optimal health-related quality of life of the participants at bivariate analysis.
| VARIABLE | ALL (N = 83) FREQ (%) | HEALTH RELATED QUALITY OF LIFE (TOTAL SCORE) | P-VALUE | ||
|---|---|---|---|---|---|
| OPTIMAL (N = 50) FREQ (%) | SUB OPTIMAL (N = 29) FREQ (%) | POOR (N = 4) FREQ (%) | |||
| Taking warfarin (n = 83) | |||||
| I don’t mind taking warfarin | |||||
| Definitely false | 38(45.8) | 22(44) | 15(51.7) | 1(25) | 0.556 |
| Definitely true | 45(54.2) | 28(56) | 14(48.3) | 3(75) | |
| I can’t always be bothered taking my tabs | |||||
| Definitely false | 62(74.7) | 36(72) | 22(75.9) | 4(100) | 0.457 |
| Definitely true | 21(25.3) | 14(28) | 7(24.1) | 0(0) | |
| It interferes with my social life | |||||
| Definitely false | 66(79.5) | 41(82) | 22(74.9) | 3(75) | 0.815 |
| Definitely true | 15(18.1) | 8(16) | 6(20.7) | 1(25) | |
| Mostly false | 1(1.2) | 1(2) | 0(0) | 0(0) | |
| Mostly true | 1(1.2) | 0(0) | 1(3.5) | 0(0) | |
| I don’t fully understand why I have to take them | |||||
| Definitely false | 70(87.5) | 43(89.6) | 23(82.1) | 4(100) | 0.774 |
| Definitely true | 4(5) | 2(4.2) | 2(7.1) | 0(0) | |
| Mostly false | 3(3.8) | 1(2.1) | 2(1.1) | 0(0) | |
| Not sure | 3(3.8) | 2(4.2) | 1(3.7) | 0(0) | |
| I simply forget | |||||
| Definitely false | 69(84.2) | 45(91.8) | 21(72.4) | 3(75) | 0.116 |
| Definitely true | 7(8.5) | 2(4.1) | 4(13.8) | 1(25) | |
| Mostly false | 3(3.7) | 2(4.1) | 1(3.5) | 0(0) | |
| Mostly true | 1(1.2) | 0(0) | 1(3.5) | 0(0) | |
| Not sure | 2(2.4) | 0(0) | 2(6.9) | 0(0) | |
| I am afraid I may get a bleed or bruise | |||||
| Definitely false | 53(64.6) | 39(78) | 13(46.4) | 1(25) | 0.017 |
| Definitely true | 24(29.3) | 10(20) | 11(39.3) | 3(75) | |
| Mostly false | 3(3.7) | 1(2) | 2(7.1) | 0(0) | |
| Mostly true | 1(1.2) | 0(0) | 1(3.6) | 0(0) | |
| Not sure | 1(1.2) | 0(0) | 1(3.6) | 0(0) | |
| I don’t want my friends/colleagues to know I have an artificial valve | |||||
| Definitely false | 47(56.6) | 40(80) | 7(24.2) | 0(0) | <0.001 |
| Definitely true | 35(42.2) | 10(20) | 21(72.1) | 4(100) | |
| Mostly true | 1(1.2) | 0(0) | 1(3.5) | 0(0) | |
| Doing regular blood tests (n = 83) | |||||
| I don’t mind having a regular blood test | |||||
| Definitely false | 38(45.8) | 22(44) | 13(44.8) | 3(75) | 0.504 |
| Definitely true | 44(53.0) | 28(56) | 15(51.7) | 1(25) | |
| Mostly false | 1(1.2) | 0(0) | 1(3.5) | 0(0) | |
| The tests are painful | |||||
| Definitely false | 39(47) | 26(52) | 11(37.9) | 2(50) | 0.495 |
| Definitely true | 40(48.2) | 20(40) | 18(62.1) | 2(50) | |
| Mostly false | 2(2.4) | 2(4) | 0(0) | 0(0) | |
| Not sure | 2(2.4) | 2(4) | 0(0) | 0(0) | |
| It interferes with my daily life | |||||
| Definitely false | 63(75.9) | 41(82) | 20(69) | 2(50) | 0.303 |
| Definitely true | 17(20.5) | 8(16) | 7(24.1) | 2(50) | |
| Mostly false | 1(1.2) | 0(0) | 1(3.5) | 0(0) | |
| Not sure | 2(2.4) | 1(2) | 1(3.5) | 0(0) | |
| I don’t understand why I have to have them | |||||
| Definitely false | 72(86.8) | 45(90) | 23(79.3) | 4(100) | 0.322 |
| Definitely true | 8(9.6) | 5(10) | 3(10.3) | 0(0) | |
| Mostly false | 1(1.2) | 0(0) | 1(3.5) | 0(0) | |
| Not sure | 2(2.4) | 0(0) | 2(6.9) | 0(0) | |
| It is expensive to me (I can’t afford it) | |||||
| Definitely false | 38(46.3) | 28(56) | 8(28.6) | 2(50) | 0.089 |
| Definitely true | 41(50) | 20(40) | 19(67.9) | 2(50) | |
| Mostly true | 1(1.2) | 0(0) | 1(3.6) | 0(0) | |
| Not sure | 2(2.4) | 2(4) | 0(0) | 0(0) | |
Table 5
Factors associated with optimal health-related quality of life of the participants at multivariable analysis.
| VARIABLE | ODDS RATIO | 95% CI | P-VALUE |
|---|---|---|---|
| BMI, median(range) | 1.2 | 1.1–1.3 | 0.006 |
| Underweight (<18.5) | 1.0 | ||
| Normal weight (18.5–24.9) | 1.3 | 0.68–2.66 0.162–2.42 | 0.001 0.025 |
| Overweight (25.0–29.9) | 1.6 | ||
| Obese (>30.0) | N/A | ||
| I am afraid I may get a bleed or bruise | |||
| Definitely false | 1.0 | ||
| Definitely true | 1.5 | 1.21–2.47 | 0.004 |
| Mostly false | 1.5 | -0.82–3.75 | 0.208 |
| Mostly true | 2.4 | -1.54–6.36 | 0.231 |
| Not sure | 2.4 | -1.54–6.36 | 0.231 |
| I don’t want my friends/colleagues to know that i have an artificial valve | |||
| Definitely false | 1.0 | ||
| Definitely true | 2.7 | 1.64–3.81 | <0.001 |
| Mostly true | 3.3 | -.0.83–7.5 | 0.116 |
