Table 1
Demographics of patient and control participants.
| CHARACTERISTICS | N (%) | ||
|---|---|---|---|
| Age | |||
| 5–12 years | 46 (40.0%) | ||
| 13–17 years | 40 (34.8%) | ||
| 18–25 years | 29 (25.2%) | ||
| Total (n = 115) | Pediatric (n = 86) | Adult (n = 29) | |
| Sex | |||
| Male | 69 (60%) | 49 (57%) | 20 (69%) |
| Female | 46 (40%) | 37 (43%) | 9 (31%) |
| Family structure | |||
| Single parent family | 31 (27%) | 22 (26%) | 9 (31%) |
| Two parent family | 76 (66%) | 64 (74%) | 12 (41%) |
| Others | 8 (7%) | 0 | 8 (28%) |
| Monthly Household Salary (3600 UGX = $1 USD) | |||
| 0–50,000 UGX | 34 (30%) | 27 (32%) | 7 (24%) |
| 50,000–100,000 UGX | 19 (17%) | 14 (16%) | 5 (17%) |
| 100,000–150,000 UGX | 8 (7%) | 6 (7%) | 2 (7%) |
| >150,000 UGX | 50 (43%) | 39 (45%) | 11 (38%) |
| Not reported | 4 (3%) | 0 | 4 (14%) |
| Location of surgery | |||
| Uganda | 35 (30%) | 26 (30%) | 9 (31%) |
| Abroad | 79 (69%) | 59 (60%) | 20 (69%) |
| Unknown | 1 (1%) | 1 (1%) | 0 |
| Primary diagnosis | |||
| Tetralogy of Fallot | 37 (32%) | 25 (29%) | 12 (41%) |
| Atrial septal defect | 14 (12%) | 9 (10%) | 5 (17%) |
| Ventricular septal defect | 42 (37%) | 35 (41%) | 7 (24%) |
| Others | 22 (19%) | 17 (20%) | 5 (17%) |
| STAT score(14) | |||
| 1 | 58 (50%) | 45 (52%) | 13 (45%) |
| 2 | 40 (35%) | 27 (31%) | 13 (45%) |
| 3 | 6 (5%) | 4 (5%) | 2 (7%) |
| 4 | 7 (6%) | 6 (7%) | 1 (3%) |
| Not known | 4 (4%) | 4 (5%) | 0 |
| Number of surgeries | |||
| 1 | 99 (86%) | 75 (87%) | 24 (83%) |
| 2 | 10 (9%) | 8 (9%) | 2 (7%) |
| 3 | 3 (3%) | 2 (2%) | 1 (3%) |
| 4 | 1 (1%) | 0 | 1 (3%) |
| Unknown | 2 (2%) | 1 (1%) | 1 (3%) |
[i] Abbreviations: STAT score; The Society of Thoracic Surgeons – European Association for Cardio-Thoracic Surgery Congenital Heart Surgery Mortality Categories; UGX: Ugandan Schillings; USD: United States Dollar.
Table 2
HRQOL scores in children – patients vs sibling controls (self report).
| DOMAIN | PATIENTS | SIBLING CONTROL PARTICIPANTS | P-VALUE |
|---|---|---|---|
| All Children (5–17 years) | |||
| Physical score | 88.74 ± 15.79 | 95.13 ± 8.77 | 0.0003 |
| Emotional score | 89.77 ± 14.43 | 92.79 ± 10.42 | 0.0444 |
| Social score | 90.35 ± 16.87 | 94.65 ± 10.59 | 0.0178 |
| School score | 82.57 ± 17.54 | 86.08 ± 14.08 | 0.2210 |
| Age (5–12 years) | |||
| Physical score | 89.95 ± 18.02 | 96.81 ± 6.59 | 0.0097 |
| Emotional score | 92.50 ± 16.01 | 94.52 ± 10.49 | 0.3605 |
| Social score | 90.98 ± 18.22 | 94.52 ± 9.81 | 0.3962 |
| School score | 80.22 ± 18.98 | 87.45 ± 13.33 | 0.0423 |
| Age (13–17 years) | |||
| Physical score | 87.34 ± 12.85 | 92.56 ± 10.93 | 0.0815 |
| Emotional score | 86.63 ± 11.79 | 90.15 ± 9.88 | 0.1818 |
| Social score | 89.63 ± 15.38 | 94.85 ± 11.84 | 0.0585 |
| School score | 85.35 ± 15.46 | 83.97 ± 15.11 | 0.6467 |
[i] Abbreviation: HRQOL: Health Related Quality of Life.
Table 3
HRQOL scores in young adults – patients vs sibling controls (self report).
| DOMAIN | PATIENT | SIBLING | P-VALUE |
|---|---|---|---|
| Adults – SF 36 | |||
| Physical score | 87.48 ± 11.18 | 92.07 ±10.48 | 0.0394 |
| Emotional score | 71.31 ± 16.32 | 79.03 ± 14.84 | 0.0401 |
| Social score | 81.07 ± 21.02 | 86.24 ± 20.94 | 0.1291 |
| General score | 75.69 ± 19.90 | 80.00 ± 16.96 | 0.2470 |
| Pain | 73.41 ± 25.98 | 82.00 ± 24.68 | 0.2119 |
| Energy fatigue | 68.28 ± 15.66 | 73.10± 17.13 | 0.1711 |
| Physical (Role limitation) | 81.90 ± 31.27 | 93.97 ± 17.24 | 0.0519 |
| Emotional (Role limitation) | 89.62 ± 26.95 | 88.52 ± 25.65 | 0.2943 |
[i] Abbreviation: SF: Short Form Survey.
Table 4
Multivariate predictors of hrqol in patients (based on self report patient scores).
| AGE GROUP | TOOL | DOMAIN | VARIABLE | OR (95% CI) | P-VALUE |
|---|---|---|---|---|---|
| Children | Peds QOL | Physical | Age group (1 vs 2) | 2.749 (1.041–7.260) | 0.0413 |
| Number of surgeries | 5.241 (1.14–24.07) | 0.0332 | |||
| Children | Peds QOL | Emotional | Age group (1 vs 2) | 4.263 (1.91–9.51) | <0.0001 |
| Children | Peds QOL | School | Surgery location (Abroad vs Uganda) | 3.562 (1.292–9.826) | 0.014 |
| Young adult | SF-36 | Social | Surgery location (Abroad vs Uganda) | 8.385 (1.298–54.181) | 0.0255 |
[i] Abbreviations: HRQOL: Health Related Quality of Life; QOL: Quality of Life; SF: Short Form Survey.
Table 5
Thematic responses by patient participants and parents from qualitative interviews t.
| SCHOOL PERFORMANCE IMPACT | FREQUENCY | TERTILE | REPRESENTATIVE QUOTES | ||
|---|---|---|---|---|---|
| H | M | L | |||
| Before CHD surgery | ‘He doesn’t miss school since they inserted the metal inside him to open the blocked vessels. Before that, he would vomit that you couldn’t take him to school in that condition.’ – Parent to Participant 38P (8 yrs, MQOL) ‘Right now I spend more time at school. I no longer fall sick as often like in the past ever since I had my second operation. Now I only return home if my mother calls at school asking for me to go and visit the hospital.’ – Participant 37P (15 yrs, LQOL) | ||||
| Affected | 21 | 6 | 8 | 7 | |
| Unaffected | 3 | 2 | 1 | 0 | |
| After CHD surgery | |||||
| Improved performance and attendance | 14 | 8 | 4 | 2 | |
| PHYSICAL FUNCTIONALITY IMPACT | |||||
| Before CHD surgery | ‘I never used to play. I used to be in one place watching others play. I also used to arrive late at school. I didn’t have the energy to walk.’ – Participant 23p (24 yrs, HQOL) ‘He (patient) is fine because he can go and fetch some water, he can graze the goats, milk the cow and he can do some work at home. He can ride a bicycle, you can send him to go to the shop and bring something and in a short time he is back but he could not before (CHD surgery). I feel very happy.’ – Parent to Participant 25p (16 yrs, HQOL) ‘There is nothing that my health has stopped me from doing because recently, I took a choice to start working out and it hasn’t affected my health in any way. I feel okay; I can do anything as long as I choose to do it.’ – Participant 42 (24 yrs, HQOL) | ||||
| Inability to do daily chores | 7 | 4 | 1 | 2 | |
| Inability to participate in sports/games | 10 | 4 | 3 | 3 | |
| After CHD surgery | |||||
| Improved ability to do daily chores | 19 | 7 | 8 | 4 | |
| Improved ability to participate in sports/games | 12 | 5 | 5 | 2 | |
| EMPLOYMENT IMPACT | |||||
| Worried/unable to get desired jobs | 5 | 3 | 2 | 0 | ‘I at one point, went to a delivery company after my form 4 and they asked me about my condition, I told them that I had a heart surgery when I was young. They told me that I couldn’t get a job there because they lift heavy things. So, that affects finding employment. I am finishing my mechanics course this year and I will start searching for a job however, I know that I will be affected and I will end up getting a job from someone that I know.’ – Participant 79p (21 yrs MQOL) ‘I don’t think it will affect me because I am really fine. It would affect me if I am getting any challenges with my health right now, that’s how it would be tough but I don’t think that it will affect me.’ – Participant 42 (24 yrs HQOL) |
| Not worried/able to get desired jobs | 5 | 1 | 2 | 2 | |
| SOCIAL LIFE IMPACT | |||||
| Partner relationships impact | |||||
| Affected/Worried about marital relationships | 2 | 0 | 0 | 2 | ‘I might get married to a stubborn woman who might start disturbing me and then stress me. So, that makes me feel like, even if I do not get married soon, let me first live a single life such that my life and health stabilize.’ – Participant 90P (19yrs, LQOL) ‘They (students) would say that I am disabled and I didn’t sexually grow correctly. Yeah, they used to say that I can’t give birth’ – Participant 30p (22rys, LQOL) ‘For them, (community members) they think that I cannot get married. They say things like, “now who can marry someone who had a heart disease?” Okay, they call me lame.’ – Participant 13p (20yrs, LQOL) ‘I don’t think it affects my marriage plans or my relationship because right now, I’ve been in a relationship for 5 years and it hasn’t affected my relationship. So, I don’t think it will affect marriage’ – Participant 42 (24 yrs, HQOL) |
| Not affected/worried about marital relationships | 8 | 3 | 2 | 3 | |
| Childbearing impact | |||||
| Affected/worried about childbearing | 3 | 2 | 0 | 1 | ‘That thing is on my mind and I do not know why it disturbs me – that I will never give birth! I just feel bad about it.’ – Participant 13p (20yrs, LQOL) |
| Not affected/worried about childbearing | 7 | 3 | 1 | 3 | |
| Community relationship impact | |||||
| Before CHD surgery | ‘You know at school I was isolated at first… students would be afraid of me because when they took me to that school, children were told, “This girl had a heart problem. So, if you push her and she falls, I don’t know whether your parents will get money to put her in the airplane and fly her out!” So, nobody would play with me.’ – Participant 13P (20yrs, LQOL) ‘Every time a teacher was going to cane me, they (friends) would quickly tell him/her not to. They would say, “Let him be. His health is confused.”’ – Participant 79p (21 yrs, MQOL) ‘The people in the community didn’t mistreat me but the children would mock me before the operation. Some would tell me that I have a bicycle heart. But since I was operated on, I don’t hear those things anymore… they would say that I am weak and don’t have power. “She’s sickly and her heart isn’t real but a bicycle heart.”’ – Participant 66p (aged 18 yrs, HQOL) | ||||
| Faced stigmatization/rejection | 9 | 3 | 3 | 3 | |
| After CHD surgery | |||||
| No longer faced stigmatization/rejection | 2 | 1 | 1 | 0 | |
| HEALTH IMPACT | |||||
| Emotional health impact | |||||
| Before CHD surgery | ‘I used to be alone and envy or be jealous of other people doing things that I couldn’t do, basically, I won’t say that there were people isolating me because I was self-isolating myself. I was mentally perturbed At school, I was kind of segregated.’ – Participant 30p (22 yrs, MQOL) | ||||
| Short tempered | 3 | 0 | 0 | 3 | |
| Self-isolation/consciousness | 4 | 2 | 1 | 1 | |
| After CHD surgery | |||||
| No longer self-isolates | 1 | 0 | 1 | 0 | ‘After the operation, I regained my humility. I was like, “I am now feeling better! You never know; I might be a professor of tomorrow or a doctor of tomorrow!” So, my heart relaxed again. Even my friends started coming back in my life because I had avoided them since they looked happy and yet I was sad. I remember they would play football and yet I was just sitting there watching! They would run around but I was just sitting!’ – Participant 90p (19 yrs, MQOL) |
| Psychological health Impact | |||||
| Before CHD surgery | ‘I randomly just get depressed on my own. When I fall sick, like that time when I used to breathe and feel pain in the chest, my mind just told me, “you are about to die – you are about to die” and then, “you won’t give birth!”’ – Participant 13P (20 yrs, LQOL) ‘I used to get mental problems, stress and self-isolation. I would spend the entire day indoors and not wanting to talk to anyone (before surgery) … I am (now) emotionally doing well and mentally am doing fine that’s what I can say. It is not as bad as before I went for the surgery.’ – Participant 30p (22 yrs, MQOL) | ||||
| Worry/panic/despair/frustration | 13 | 4 | 4 | 5 | |
| Forgetfulness | 2 | 0 | 1 | 1 | |
| Depression | 4 | 2 | 0 | 2 | |
| After CHD surgery | |||||
| No more worries/panics/frustration | 15 | 4 | 7 | 4 | |
| Physical growth and development | |||||
| Before CHD surgery | ‘Before the surgery, he was stunted and dark skinned but the Indians called it being “purple.” He was like a child who got burnt and wasn’t growing any hair. He wasn’t growing in any way, he had swollen fingers and feet and he also couldn’t move from here to there. Currently, since the operation you can see that he growing and he looks good. However, he has to get another operation.’ – Parent to Participant 6P (8 yrs, LQOL) ‘She recovered very well. She has never gotten any problem, not even falling sick. Otherwise, in the past, she used to fall sick so often that we were always admitted. But ever since her surgery, we have never been admitted again. Except the normal illnesses like malaria.’ – Parent to Participant 75 (17 yrs, MQOL) | ||||
| Failure to thrive | 7 | 2 | 2 | 3 | |
| Sickly | 11 | 6 | 2 | 3 | |
| After CHD surgery | |||||
| Reduced or no ill episodes experienced | 18 | 7 | 7 | 4 | |
| Enjoys normal growth/thriving | 8 | 4 | 2 | 2 | |
[i] Abbreviations: HQOL: High Quality Life Tertile; LQOL: Low Quality of Life Tertile; MQOL: Middle Quality of Life Tertile; yrs: years.