Assessment of Quality of Life and Socioeconomic Inequality in Children with Cyanotic Congenital Heart Disease in Sulaymaniyah, Iraq

doi:10.21203/rs.3.rs-4529142/v1

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Research Article

Assessment of Quality of Life and Socioeconomic Inequality in Children with Cyanotic Congenital Heart Disease in Sulaymaniyah, Iraq

https://doi.org/10.21203/rs.3.rs-4529142/v1

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Purpose

This study aimed to investigate health-related QoL in children with cyanotic congenital heart disease (CCHD) and to determine socioeconomic inequality in CCHD.

Design:

Case-Control Study.

Methods

This study was conducted at Children’s Heart Hospital and Primary Healthcare Centers in Sulaymaniyah, Iraq between December 01, 2021, and May 01, 2022. The study included 200 healthy and 200 with CCHD. For this purpose, a 5 Likert Scale QoL questionnaire was used to collect the data of patients and their parents through a direct face-to-face interview. Then, children's sociodemographic data and parents' socioeconomic status (SES) were investigated together with another 22 items in 6 domains. The socioeconomic status dimension is based on the validated SES index in Iraq.

Findings:

Studied children had equal gender and age distribution. CCHD was more prevalent in families with low SES, and ECI was − 0.44. Children with CCHD had significantly lower mean scores for the overall QoL dimension (Mean rank = 124) compared to healthy children (Mean rank = 277) (P ≤ 0.001). The mean SpO2 levels of healthy children were 9% higher than CCHD children (P < 0.001). Moreover, parents with CCHD children stated that 57% of their children had moderate to excellent health, while those with healthy children reported 98% (P = 0.001).

Conclusions

Significant deficits in all QoL dimensions were found in CCHD children. Also, we discovered an unequal distribution of CCHD in families with lower SES.

Clinical evidence:

The observed disparities in the prevalence of CCHD and its impact on quality of life underscore the critical significance of socioeconomic factors in contributing to the health outcomes of affected children. The intricate interplay between socioeconomic status and pediatric health, particularly in the context of congenital heart diseases, necessitates a comprehensive understanding to inform targeted interventions and support systems for affected families.

Pediatrics

Quality of life

congenital heart disease

children inequality

hospital-based study

socioeconomic

cyanotic congenital heart disease

Health-related quality of life (QoL) is the quantification of the known illness, therapy on the capacity of the person's ongoing work, and the patient's perception of the impact of the sickness and its treatment on their life (Raj et al., 2019). Accordingly, the assessment of the person’s QoL depends on asking some questions about feelings about life; the aim is to determine the individual’s physical, psychological, and social well-being score by addressing the individual as a whole with all their characteristics (Sertçelik et al., 2018). The term "health-related quality of life" (HRQOL) refers to a broad, multidimensional concept encompassing not only disease states but also a person's physical, psychological, and social well-being. Several studies mention different factors related to the HRQOL in children like biological, physiological, symptoms, functioning, and general health (Wilson & Cleary, 1995). Other researchers investigating potential determinants of HRQOL have proposed that certain factors may have different associations with HRQOL than others. For example, socio-demographic characteristics (such as age, education, household income, and so on) as well as behavior and physical activity (Wendel-Vos et al., 2004). The great advance that was made many years ago concentrated on children with chronic and congenital heart disease (CHD) to determine which types of groups and subgroups required support due to the severe difficulties they experienced (Borghi et al., 2007). Therefore, the estimation of QoL ought to be agreed to the children’s improvement arrangement and development level, the seriousness of the illness, their family environment, the worthiness of the infection, and the identified highlights. Moreover, appraisal of the QoL in children with cyanotic CHD should be persistent because it was specified surgery might guarantee survival, but it does not permit ordinary life for the reason that post-operatively required follow-up and arranged reassessment of the diseases, as well as implementation and compliance with the treatment rules (Maya et al., 2020). Research has indicated that children with cyanotic CHD generally experience a lower quality of life compared to children who have non-cyanotic CHD or are considered to be in good health (Maya et al., 2020).

Frequent re-hospitalization, day-by-day medicine, and the limitations imposed by the illness of children with cyanotic CHD affect a child's psychological status. However, the majority of children with CCHDs represent a subgroup at high risk for this problem because they consider it inevitable or because children are not able to seek help (Biber et al., 2019). However, CCHD which is called critical CHD includes 3 different types of lesions: right heart obstructive lesions, left heart obstructive lesions, and mixing lesions (Schaan et al., 2019). Cyanotic CHD primarily comprises septal cardiac defects such as ASD, VSD, and AVSD, as well as left ventricular outflow obstructive lesions including aortic stenosis and COA. Other complex forms of cyanotic CHD include TOF, TGA, and total anomalous pulmonary venous returns. (J. I. Hoffman & Kaplan, 2002). Advances in surgical techniques and postoperative care have resulted in a significant increase in the survival of children with (CHD) and improved QoL. Despite long-standing interest in this disorder, the precise etiology of CCHD is unknown. Some risk factors are associated with CCHD like chemical exposure, genetics, consanguinity, and rubella infection during gestation (Bittles, 2001; Gorini et al., 2014). The financial burden is enormous, and the family, the hospital, and the government share it. Obtaining medication and surgical treatment is usually more expensive than anticipated (J. Hoffman, 2013).

Poor QoL in CCHD is often attributed to the lack of social acceptance, especially in the school environment. More in detail, the physical impairment that these patients experience makes them unable to fulfill their duties. As a result, they, as a rule, ought to abstain from activities they used to enjoy before the onset of the disease, thus feeling loneliness, rejection, and social isolation. In addition, the children are not committed to accomplishing the task, and lack performance, and organization of time because of frequent hospitalization/treatment (Vukojević et al., 2017). The treatment of CCHD, particularly in children with TOF, is performed during the first year of life or when the child reaches the optimal weight of 10 kg, whereas others require immediate intervention to ensure survival. In Iraq, tens of thousands of children are on waiting lists for surgery, and thousands more are born with the disease each year, making congenital heart disease a serious and understudied public health problem. Except for a small proportion of simple and self-correcting defects, as well as some defects that can be repaired using minimally invasive procedures, most cases of symptomatic CHD, particularly those involving large, complex, or multiple defects, necessitate open-heart surgery if the child is to survive into adulthood. These open-heart procedures were not being performed regularly in the country, owing to a lack of trained surgeons, nurses, and other health workers, as well as a lack of infrastructure, including equipment and facilities for performing these difficult surgeries. For families with children who had severe cases of CHD, treatment outside of the country was frequently the only option (Phillips, 2012).

It has been shown that the cognitive impairment experienced by children with CHD is associated with cyanosis or the severity of the disease (Liamlahi & Latal, 2019). Likewise, several factors influence the QoL of children with CHD, such as family environment and health prognoses throughout their lives. The QoL of children can be influenced by family factors, including their relationship with siblings, grandparents, and acceptance of the disease, compliance to treatment, and stress response. Additionally, parental education level has been associated with children's QoL, with lower education levels potentially contributing to delayed medical assistance and worsening health before diagnosis. (Raj et al., 2019). Thus, this study aimed to investigate health-related QoL in children with CCHD, with emphasis on children with CCHD, and assess socioeconomic inequality in CCHDs in Sulaymaniyah, Iraq.

Sample size and study setting

This case-control hospital-based study was conducted on 200 children with CCHD at Children's Heart Hospital and 200 healthy children at Primary Healthcare Centers in Sulaymaniyah province in northern Iraq from December 01, 2021, to May 01, 2022. The prevalence of CCHD, the most common cyanotic type with a TOF of 7%, was used to calculate the sample size of CCHD. The sample size of healthy children was determined based on the estimated sample size of CCHD as a reference, which is a convenient approach for this study. Children's Heart Hospital is only the largest hospital located in the center of Sulaymaniyah City that provides special care for children with CHD and other heart problems such as diagnosis, catheterization intervention, and open-heart surgery. This hospital has a very busy daily schedule for diagnosing new cases, following up on, and treating a larger number of children with CHD. Any children diagnosed with moderate to severe CCHD based on echocardiography and additional clinical criteria such as symptoms by an experienced pediatric cardiologist were selected and interviews were done with their parents at Children's Heart Hospital. Whereas healthy children were free of disease or any syndrome and visited Primary Healthcare Centers with their parents for vaccination, growth issues, or development monitoring. All children’s parents also were recruited for interviews with their children.

Inclusion criteria

Children of any gender between the ages of 3 and 13 years, residing in Sulaymaniyah province, and diagnosed with mild or complex CCHD by a pediatric cardiologist during their visit to the Children's Heart Hospital were selected as cases of cyanotic CHD. Healthy children of any gender, between the ages of 3 and 13 years, residing in Sulaymaniyah province, who visited primary healthcare centers for vaccination or monitoring of growth and development were selected for inclusion in the study.

Exclusion criteria

Children who were diagnosed with non-cyanotic CHD, cyanotic CHD with syndromes, underwent corrective surgery for CCHD, resided outside of Sulaymaniyah province, or were either under 3 years or over 13 years of age were not included in the study. Similarly, healthy children who resided outside of Sulaymaniyah province, or were either under 3 years or over 13 years of age were also excluded from the study

Ethical consideration

This study was approved by the scientific and ethics committees of the College of Medicine, University of Sulaimani, Sulaymaniyah, Iraq (No. 80-UoS on May 05, 2021). All procedures used in this study are complied with the Declaration of Helsinki. On the other hand, a consent form was filled out by the patient/parents, and families were informed about the purpose of the study. Also, they were allowed to quit at any time without giving a reasonable declaration.

Questionnaire

In this study, a detailed questionnaire was developed for the assessment of QoL depending on the two-instrument Pediatric QoL Inventory (Peds QL) (Tahirović et al., 2011) and the Pediatric Cardiac QoL Instrument (Bhatt et al., 2017) for selecting the QoL domains. A developed questionnaire was translated into the participants' native language of Kurdish, which consists of three parts. The first was on sociodemographic data of children (age, gender, weight, and education level), while the second part was on parents' socioeconomic status (SES) (mothers'/fathers' education, occupation, house/car ownership, and family household income). The third part of the questionnaire consists of 22 items in 6 domains, which were general health condition (6 items), social health life (2 items), physical health capacity (4 items), health problem (5 items), medical treatment status (2 items), and psychological status (3 items). The questionnaire was then tested on ten children/parents to ensure comprehension and acceptability. The questionnaire was developed depending on the criteria in this study (Tsang et al., 2017). After that, eligible parents were interviewed face-to-face with a response rate of 100%. In this study, children's ages and gender frequencies were matched.

Later on, the 5 Likert scales were adjusted to test the association of QoL between each group and presented as not at all (1), slight (2), moderate to severe (3), with item 3 being combined with items 4 and 5. The scores belonging to these dimensions were calculated independently, and the total QoL score was obtained by adding the scores of these six dimensions. The score is calculated by counting the points given to the items for each dimension, converting them so that the scores are scaled between 0 and 100, and summing. A high score indicates good QoL, while a low score indicates poor QoL. For the study socioeconomic status dimension we based on the validated SES index in Iraq (Omer & Al-Hadithi, 2017). Based on the 50th, 70th, and 100th percentiles of the total domain score QoL distribution, the QoL was put into three levels.

Statistical analysis

Stata software (version 15.0) was used for statistical analyses. Frequencies and percentages were used to describe categorical variables. Pearson Chi-square was performed on the association of QoL in both groups. The Concentration Index (CI) measures socioeconomic status (SES) equality. The student's t-test and the Mann-Whitney test were used for QoL scores. A bivariate correlation was carried out to analyze the correlation between age and weight; the results were presented as Pearson’s correlation coefficient (r) with the corresponding level of statistical significance. QoL scores in both groups compared by age were analyzed using a nonparametric (Kruskal-Wallis Test), and the; results are presented as a mean rank. The student's t-test was used to compare the subdimension scores, and the results were shown as a mean ± standard deviation (SD). The level of certainty was set at 95%, and the P-value of < 0.005 was considered significant.

Regarding the sociodemographic characteristics of CCHD and healthy children, there was a similar gender distribution for both studied groups (50%, P = 1). In addition, children of similar ages participated in both groups: 3–6 years, followed by 7–9 years, then ≥ 10 years (P = 1). Almost (40%) of those who had CCHD weighed ≤ 20 kg, compared to 30.2% of the healthy group (P < 0.001). The highest percentage (79.5%) of lower SES families have children with CCHD. The majority (63.5% vs. 63% in both) were in primary school, while the remaining (19.5% vs. 18.5% in both) were in kindergarten, (9% vs. 10.5% in both) were in secondary school, and (8% in both) were not enrolled P = 0.9. (Table 1).

Table 1

Sociodemographic characteristics of studied children.
Characteristic	CCHD	Healthy children	P-value
Characteristic	Number; %		P-value
Gender
Male	100 (50)	100 (50)	1
Female	100 (50)	100 (50)	1
Age (Year)
3–6	77 (39.9)	77 (39.9)	1
7–9	62 (32.1)	62 (32.1)
≥ 10	54 (28)	54 (28)
Body weight (Kg)
≤ 20	80 (40.0)	60 (30.2)	0.08
21–30	81 (40.5)	79 (39.5)
≥ 31	39 (19.5)	61 (30.5)
Education level
Kindergarten	39 (19.5)	37 (18.5)	0.9
Primary	127 (63.5)	126 (63)
Secondary	18 (9.0)	21 (10.5)
None	16 (8.0)	16 (8.0)
Chi-square test, CCHD: Cyanotic congenital heart disease

Concerning the parent’s SES that had CCHD children, the majority of them (31.3%) had the poorest SES, (22.5%) had poorer SES, (20%) had moderate SES, (16.7%) had wealthy SES and (9.5%) had the wealthiest SES. The CCHD children were more prevalent among the families with the poorest SES (44%), compared to those with the richest SES (1.5%) (P < 0.001). Among families with CCHD children, 26.3% did not own houses compared to 33% of children who lived in rental homes with their families (P = 0.003). Most mothers (40.3%) with CCHD children graduated from University, compared to 12% of children that had an illiterate mother (P < 0.001). Regarding fathers’ education, most of them (35.3%) graduated from University compared to 29.5% of children who lived with fathers who had primary school education (P < 0.001). On the other hand, most mothers were employed (55.2%), and 40.5% of CCHD children lived with them (P < 0.001), while most fathers (49.7%) had free work and 61.5% of CCHD children lived with them (P < 0.001). Most parents stayed inside the city (70%) compared to 53.5% of CCHD children’s residents outside of the city (P < 0.001) (Table 2).

Table 2

Distribution of children with cyanotic congenital heart diseases by families’ sociodemographic factors
Characteristic	Children’s parent	CCHD distribution	P-value
Characteristic	Number; %
Socio-economic status			< 0.001*
Poorest	125 (31.3)	88 (44)
Poorer	90 (22.5)	71 (35.5)
Middle	80 (20)	24 (12)
Richer	67 (16.7)	14 (7.0)
Richest	38 (9.5)	3 (1.5)
House ownership
Owner	295 (73.8)	134 (67)	0.003*
Partial owned	39 (9.8)	28 (14)
Rent and others	66 (16.5)	38 (19)
Mothers’ education			< 0.001*
Illiterate	48 (12)	46 (23)
Primary	64 (16)	42 (21)
Intermediate	59 (14.7)	32 (16)
Secondary	68 (17)	44 (22)
University	161 (40.3)	36 (18)
Fathers’ education			< 0.001*
Illiterate	31 (7.8)	30 (15)
Primary	76 (19)	59 (29.5)
intermediate	34 (8.5)	13 (6.5)
Secondary	118 (29.5)	50 (25)
University	141(35.3)	48 (24)
Mothers’ occupation			< 0.001*
Housewife	219 (29.8)	71 (35.5)
Student	10 (2.5)	10 (5)
Free work	50 (12.5)	38 (19)
Employee	221 (55.2)	81 (40.5)
Fathers’ occupation			< 0.001*
Unemployed	7 (1.8)	1 (0.5)
Student	11 (2.8)	9 (4.5)
Free work	199 (49.7)	123 (61.5)
Employee	183 (45.7)	67(33.5)
Residency			< 0.001*
Inside City	280 (70)	93 (46.5)
Outside city	120 (30)	107 (53.5)
SES
High	105 (26.3)	17 (8.5)	< 0.001
Medium	80 (20)	24 (12)
Low	215 (53.7)	159 (79.5)
Total	400 (100)	200 (100)

*: Significant difference using Chi-square test, CCHD: Cyanotic congenital heart disease

Table 3 shows CCHD inequalities based on concentration index (CI) decomposition and indicates the effect of different factors on total SES related to CCHD inequalities. SES, residence, mothers'/fathers’ educational attainment, and house ownership played different roles in influencing the CCHD inequality distribution in families with different SES statuses. In our study, we found mothers'/fathers’ occupations were negatively associated with SES of CCHD inequality. However, differences in SES of 37.7% contributed significantly to the distribution of CCHD inequality, followed by residence (30.3%) and mother's occupation (19%).

Table 3

**Decomposition of consecration index (CI) for congenital heart disease in Sulaimaniyah city.**
Social variable	B	Mean	CI	Contribution	Contribution %
Socioeconomic status	-0.393	1.3	-0.089	0.090	37.7
Residence	0.113	2.5	0.128	0.072	30.3
Mother education	0.069	3.6	0.095	0.047	19.9
Father education	0.031	3.7	0.073	0.016	7.0
Mother occupation	-0.010	2.9	0.045	− 0.002	-1.1
Father occupation	0.002	3.4	− 0.0172	− 0.000	− 0.1
House ownership	0.101	2.6	0.0179	0.009	3.9

Furthermore, the concentration curve assesses the relationship between CCHD and the SES of the families. The CCHD CI was − 0.44 (95% CI, 0.37–0.51), indicating that CCHD was more concentrated in families with low SES levels and was not evenly distributed among people with different SES levels. This distribution affects the QoL of children and families (Fig. 1).

The median age of CCHD and healthy children was 7.5 (IQR 5–10) years (Fig. 2).

Moreover, a bivariate correlation between age and weight in CCHD children and healthy children was used to investigate the quality of increasing weight (Fig. 3). In both groups, there was a significant positive relationship between age and weight concerning the child's weight gain. There was a very good increase in weight by age for children with CCHD (r = 0.889, P < 0.001); it means that 88.9% of the variation in weight can be explained by age. However, the weight trend increases gradually with age in CCHD children compared to healthy children who showed an excellent increasing weight by age (r = 0.978, P < 0.001), which means 97.8% of the variation in weight can be explained by age.

Simultaneously, the level of oxygen saturation in the blood (SpO2) was measured in children. The mean SpO2 for the healthy children was 96 ± 1.19, with a minimum of 95% and a maximum of 99%. In comparison, the cyanotic group's mean SpO2 was 87 ± 6.1, with a minimum of 70% and a maximum of 97%. As a result, the mean SpO2 levels of healthy children were 9% higher than those of children with CCHD (P < 0.001) (Table 4).

Table 4

Mean difference of saturated blood oxygen (SpO2) levels between cyanotic and healthy children.
SpO2	Mean ± SD	Minimum %	Maximum %	P-value	Mean difference
Healthy children	96 ± 1.19	95	99	< 0.001*	-9
Cyanotic children	87 ± 6.1	70	97	< 0.001*	-9
*: Significant difference using the Chi-square test

Consequently, parents with CCHD children reported that 57% of their children were in moderate to excellent health, while parents had healthy children reported 98% (χ²: 96.61, P = < 0.001). In terms of how a child's illness affects the family's social health life, 55% of parents with CCHD children reported that their child's condition had no impact on their social relationships or family income, compared to 86.5% of parents with healthy children (χ²: 50.30, P = < 0.001). Regarding the child being physically active while walking, playing, running, and climbing high places or several stairs, 74% of parents with healthy children reported being moderate to extremely active. In comparison, 34% of parents with CCHD children reported the same (χ²: 71.63, P = < 0.001). When the parents were interviewed for child health problems related to the cardiac malformation, including breathing problems, rapid heartbeat, chest pain, and cyanosis, 91% of healthy children did not have a health problem, however; 54% of children with CCHD did not have it (χ²: 70.79, P = < 0.001). Furthermore, most of the healthy children did not require drugs in their daily lives and did not become anxious when visiting hospitals and doctors (P = < 0.001), which was also true for the child's psychological condition (P = < 0.001) (Table 5).

Table 5

Association of quality of life in studied children.
Child QoL Domain	CCHD children	Healthy children	Chi-square	P-value
Child QoL Domain	Number; %		Chi-square	P-value
How to rate your child's general health condition
	20 (10)	0.0 (0.0)	96.61	< 0.001*
	66 (33)	4.0 (20)
	114 (57)	196 (98)
Social health life impacts family’s relationships and income
Not at all	110 (55)	173 (86.5)	50.30	< 0.001*
Slight	74 (37)	26 (13)
Moderate to extremely	16 (8)	1.0 (0.5)
How to rate your child’s physical health capacity as walking, playing, climbing high places, and stairs
Poor health	25 (12.5)	1.0 (0.5)	71.63	< 0.001*
Moderate health	107 (53.5)	51 (25.5)
Good health	68 (34)	148 (74)
Child health problems with limited activities as SOB, cyanosis, and rapid heartbeat
Poor health	108 (54)	182 (91)	70.97	< 0.001*
Moderate health	74 (37)	18 (9.0)
Good health	18 (9.0)	0.0 (0.0)
Children need drugs for daily life and become anxious visiting hospitals and doctors
Poor health	101 (50.5)	176 (88)	70.99	< 0.001*
Moderate health	56 (28)	21 (10.5)
Good health	43 (21.5)	3 (1.5)
How to rate a child’s psychological status (behavior, memory, and habits)
Poor health	51 (25.5)	157 (78.5)	122.99	< 0.001*
Moderate health	108 (54)	43 (21.5)
Good health	41 (20.5)	0.0 (0.0)
*: Significant difference using Chi-square test, CCHD: Cyanotic congenital heart disease

Additionally, there was no significant difference between the scores for the QoL domain and all other domains of children with CCHD. Noteworthy, we noticed a statistically significant difference in overall QoL domain scores between age groups in CCHD (P = < 0.001). We discovered differences in three of the six QoL domains in CCHD, as follows: general health (P = < 0.001), physical health (P = < 0.001), and medical treatment P = 0.02. At the same time, there was a substantial difference in general health between age groups in healthy children (P = < 0.001). However, no significant difference was found in other QoL domains and all domain scores in healthy children. (Table 6).

Table 6

Distribution of QoL scores subdimension of CCHD and healthy children.
QoL Dimension	CCHD children	Healthy children	t	P-value
QoL Dimension	Mean ± SD		t	P-value
General health
Health conditions as general	72.60 ± 21.71	76.90 ± 19.20	2.57	0.01
Nutritional condition	72.70 ± 24.16	79.90 ± 22.46	-3.08	0.002
Growth condition	87.20 ± 25.91	96.10 ± 14.82	-4.22	< 0.001*
Development condition	77.60 ± 20.50	84.0 ± 16.65	-3.43	< 0.001*
Illness worsens	78.97 ± 25.11	99.70 ± 3.16	-11.58	< 0.001*
Sleep problem	78.97 ± 25.11	99.70 ± 3.16	-11.58	< 0.001*
Social health and life
Illness affected friends and family’s social relationship	78.30 ± 26.51	92.80 ± 12.53	-6.99	< 0.001*
Illness affected the family's household income	86.80 ± 24.5	97.60 ± 7.11	-5.98	< 0.001*
Physical health capacity
Energy expenditure, playing, running	82.20 ± 21.94	90.90 ± 16.51	-4.48	< 0.001*
Walking for some block	79.60 ± 24,87	93.70 ± 13.24	-7.08	< 0.001*
Climbing high places and stairs	78.76 ± 26.20	95.10 ± 12.57	-7.90	< 0.001*
Need more rest	83.0 ± 23.70	95.10 ± 13.37	-6.28	< 0.001*
Health problem
Breathing difficulty	85.40 ± 20.80	96.10 ± 10.35	-6.51	< 0.001*
Chest pain	85.40 ± 20.80	96.10 ± 10.35	-6.51	< 0.001*
Palpitation	88.40 ± 20.58	97.10 ± 11.41	-5.23	< 0.001*
Cyanosis	56.30 ± 9.0	100 ± 0.0	-6.86	< 0.001*
Infection easily	89.80 ± 21.02	100 ± 0.0	-6.86	< 0.001*
Treatment condition
Receiving treatment	82.80 ± 26.45	99.10 ± 5.41	-8.54	< 0.001*
Anxious about visiting a physician	70.40 ± 24.55	88.90 ± 18.56	-8.50	< 0.001*
Psychological well-being
Behaviors change	62.0 ± 25.51	83.10 ± 21.04	-9.02	< 0.001*
Memory	84.10 ± 18.40	91.40 ± 13.96	-4.46	< 0.001*
Concentration	85.05 ± 21.29	92.60 ± 16.32	-3.97	< 0.001*
High score = good QoL, Low score = worse QoL, *: Significant difference using Chi-square test, CCHD: Cyanotic congenital heart disease

Also, it was discovered that children with CCHD had significantly (P < 0.001) lower average scores for all QoL subdimensions than healthy children, including general health, social health life, physical health capacity, health problems, medical treatment, and psychological well-being.

Overall, children with CCHD had significantly lower QoL scores (Mr = 124) than healthy children (Mr = 277) (z=-13.32, P ≤ 0.001). In terms of the child's overall health, it was discovered that CCHD children had significantly lower QoL scores (Mr = 146) than healthy children (Mr = 254, P ≤ 0.001). Also, CCHD children (Mr = 163) had significantly different social health lives than healthy children (Mr = 237, P ≤ 0.001) with a lower QoL in terms of physical health problems (Mr = 156), as compared to healthy children (Mr = 244, P ≤ 0.001). In terms of health problems, children with CCHD had a worse QoL (Mr = 155) than healthy children (Mr = 245, P ≤ 0.001). In terms of the child's anxiety, while visiting a hospital, doctor, or receiving treatment, significant differences were discovered between children with CCHD (Mr = 145) and healthy children (Mr = 255, P ≤ 0.001). Lower psychological status in cyanotic children (Mr = 151) than in healthy children (Mr = 249, P ≤ 0.001) was also observed (Table 7).

Table 7

Comparison of quality-of-life scores between CCHD and healthy children.
QoL Dimension	Cyanotic CHD		Healthy children
QoL Dimension	Median (IQR)	Mean rank	Median (IQR)	Mean rank	Z score	P-value
General health condition	80 (70,86)	146.69	88 (83,93)	254.31	-9.36	< 0.001*
Social health life	90 (70,100)	163.68	100 (90,10)	237.32	-9.98	< 0.001*
Physical health problems	85 (70,100)	156.89	100 (90,10)	244.11	-7.80	< 0.001*
Health problem	88 (77,96)	155.24	96 (92,10)	245.76	-7.97	< 0.001*
Treatment condition	80 (70,90)	145.69	100 (90,100)	255.32	-9.96	< 0.001*
Psychological status	80 (66,86)	151.41	93 (93,100)	249.59	-8.60	< 0.001*
All domains	81(74,87)	124.0	93 (89,95)	277.0	-13.23	< 0.001*
*: Significant difference using Mann-Whitney test, CCHD: Cyanotic congenital heart disease

The study findings suggest that the presence of CCHD in children has a negative impact on their health-related quality of life. Parents of CCHD children reported the health-related QoL of their children to be reduced in the domains of general health, physical health capacity, health problems, treatment status, and psychological status. When the QoL scores of the children with CCHD were evaluated in our study, it was observed that they had poorer QoL in terms of total QoL scores (Mr = 124) compared to healthy children (Mr = 277) and overall health conditions in the presence of CCHD. It was thought that this could be related to severe symptoms, a higher rate of drug use, and limitations in daily life in CCHD. The finding of our study is compatible with Raj et al. 2019 in India, who found that most CHD children had significantly impaired QoL (Raj et al., 2019). Also along study of Egyptians that reported cyanotic CHD has bad QoL(Emteres & Sharawy, 2021). Eslami et al. 2015 in Tehran-Iran is compatible with our study finding (Eslami et al., 2015). Furthermore, our result agrees with a study conducted in the United Kingdom that revealed cyanotic CHD have lower QoL (Lane et al., 2002). At the same time, Amedro et al. (2015) found that in France, parents-reported scores for CHD children were lower than in controls in some dimensions of QoL (Amedro et al., 2015). On the contrary, Abassi et al. 2020 in France, mentioned that QoL in CHD children aged 5 to 7 years was good and similar to that of healthy controls (Abassi et al., 2020). The current study compared the QoL of CCHD and healthy children based on their age. According to the study, children with CCHD aged 3 to 6 years had lower scores for overall QoL dimensions than children aged 6 to 7 years and older.

We also found that families with lower SES were substantially correlated to the risk of CCHD, and income inequality has adverse effects on CCHD because parents with low income cannot make more investments in their health through the benefit of medical care services, nutrition, and a safe environment. In addition, we observed mothers’ education, mainly illiterate and primary education positively contributed to CCHD inequality, while fathers’ education negatively contributed to this outcome. In terms of mothers’ occupations, housewives play an essential role in CCHD inequality. It seems that housewives do not have enough affordability to experience safe pregnancy, which could increase CCHDs among their children. In addition, fathers who have free work and are employed have to share CCHD inequality possible of exposure to a hazardous substance, unsafe workplace, and insufficient income. Our findings are consistent with those of studies conducted in Iran by Amini-Rarani et al. 2021 (Amini-Rarani et al., 2021), Pabayo et al. 2015 in the United States (Pabayo et al., 2015), and Vukojević et al. 2017 in Bosnia and Herzegovina (Vukojević et al., 2017). Another explanation of the SES inequalities in CCHD children might be dangerous lifestyle behaviors such as using alcohol and smoking and families living in rural areas have less knowledge about the importance of prenatal care services and the benefit of using supplements that can be linked between SES and the risk of CCHD. Lifestyle behaviors such as smoking and alcohol had a positive impact on the inequality of CCHD, which was consistent with previous research (Zhang et al., 2020). Due to social and cultural norms, rural families in Iraq prefer to have more children that also can be liked with SES inequality and CCHD.

Additionally, our findings indicated that CCHD and healthy children had significantly different growth in the criterion (weight for age) (P = 0.001). Children with CCHD grow and increase weight more slowly than healthy children, which may be due to genetic factors, tissue hypoxia, reduced cardiac output, pulmonary hypertension, repeated respiratory tract infections, malnutrition, and psychological factors like stress. Furthermore, comparing children in cyanotic and healthy groups, CCHD had lower nutritional status scores than healthy children, which also affected child growth. Our study follows the outcomes of two Ethiopian studies by Woldesenbet et al. 2021 (Woldesenbet et al., 2021) and Tsega et al. 2022 (Tsega et al., 2022). On the other hand, Isezuo et al. 2017 in Nigeria (Isezuo et al., 2017) and Nguah et al. 2022 in Ghana (Nguah et al., 2022) reported the same findings.

Generally, when compared to the healthy group, CCHD children had significantly different development. In this study, delays in language and gross motor development occurred more often in CCHD children than in normal children. These findings were in line with the 3 Indonesia studies by Maya et al. 2020 (Maya et al., 2020), Amelia et al. 2020 (Amelia et al., 2020), and Agustini et al. 2022 (Agustini et al., 2022). Similarly, Aghaei-Moghadam et al. 2019 in Iran (Aghaei-Moghadam et al., 2019) reported consistent results in this study. According to the literature review, CCHD can affect the development of motor, cognitive, and neurological operations, and there is even a higher incidence of academic difficulties, behavioral problems, speech delay, lack of attention, and hyperactivity in patients with CCHD (Marino et al., 2012). In addition to such clinical evidence, the need for ongoing medical monitoring, use of medication, and recurrent hospitalizations or visiting physicians may affect the self-esteem/self-image of CCHD children (Sable et al., 2011).

Regarding sleep disorders in our participants, parents of CCHD children reported significant sleep problems and worsened total sleep quality scores in CCHD children than in healthy control. These results were compatible with the studies of Bishop et al. 2019 in the USA (Bishop et al., 2019), De Stasio et al. 2020 in Italy (De Stasio et al., 2019), and Biber et al. 2019 in Germany (Biber et al., 2019). Moreover, parents of the CCHD children reported lower QoL than healthy children on the scale of physical well-being and capacity. However, CCHD children had lower scores regarding exercise limitations, fatigue when walking for a while, climbing high places and several stairs, and a negative physical health capacity. In addition, CCHD children had worsened motor functioning and autonomy compared to healthy children. This might be because oxygen saturation at rest predicts exercise capacity and ventilatory efficiency, and cardiac output decreases during energy expenditure and anatomical defects of the heart. Our findings in terms of physical health capacity were in line with Bertoletti et al. 2014 in Brazil (Bertoletti et al., 2014), Niemitz et al. 2017 in Germany (Niemitz et al., 2017), and Sleeper et al. 2016 in England (Sleeper et al., 2016).

Another notable finding in the study was the frequency of clinical symptoms in CCHD children had a greater impact on QoL. On the other hand, when evaluating a score of clinical symptoms, lower QoL scores for all subdimensions as cyanosis, shortness of breath (SOB), chest pain, palpitation, and catching infection easily were found in CCHD children compared to healthy children (P < 0.001). The cyanosis symptom is the most common in the CCHD group, with a bad score of 56 and an excellent score of 100 in healthy children, which was agreed with another study in the same field (Freitas et al., 2013; Janiec et al., 2011).

Children with CCHD still require parental and medical attention for nutrition, immunization, and winter disease prevention, all of which are critical to their long-term survival. We discovered that parents of CCHD children rated their children's anxiety and nervousness symptoms as related to the condition's treatment. The study found a significant difference between CCHD and healthy children in terms of a child while receiving treatment. In this respect, Amodeo et al. 2022 reported the same findings in Italy (Amodeo et al., 2022).

The emotional and cognitive impact of problems is greater for CCHD children than for healthy children, as, in chronic conditions, ill children experience more stress than healthy children. Children with CCHD experience behavioral change due to the frequent re-hospitalization, the daily medication, and the limitations imposed by the disease, which increase the anxiety and stress of the children. In addition, school performance is also very often impaired, and the children usually fall behind the progress of their healthy schoolmates because they have a long treatment process involving frequent hospital admissions and are likely to have a prolonged absence from school. Also, we found that the QoL scores of CCHD children were significantly lower in all subdimensions of psychological statuses, such as emotion and cognition.

Children's QoL scores of CCHD were lower than those assigned by healthy children. Overall, the study revealed deficits in overall QoL dimensions among CCHD children compared to healthy children, and they significantly delay growth and weight gain compared to healthy children. Children with CCHD perceive their QoL as being compromised in different health aspects. Assessment of QoL through their caregivers confirms these findings. Eventually, early identification and appropriate quantification of QoL deficits in children with CCHD should be advocated. Initiatives to promote early corrective treatment of CCHD may aid in lowering the QoL burden associated with CHD and implementing an educational program for caregivers of CCHD children. Furthermore, A significant inequality in the distribution of CCHD is indicated among families with poor SES. SES is the main contributor to the CCHD inequality distribution. Our study provides a reference for policymakers to improve family income for families of low SES and develop policies to reduce socioeconomic-related CHD inequalities. The key to addressing SES inequalities is to increase the income of those with lower SES and promote an equitable distribution of income across various SES groups, thereby improving their access to health services and playing an essential role in improving the family's lifestyle.

The study has one strength, as far as we know, is the first study done in our country on SES inequalities and the evaluation of the quality of life in cyanotic CHD. The study limitations include SES information biases regarding the family income household. Income is a relatively good indicator of SES, but the problem is its sensitivity. People prefer to keep their income private, especially when they are above the median or have in-kind or multiple sources of income. Wealth is even more problematic to capture than income. The problem with this approach is that it is very subjective and is a measure of a person's contentedness with material wealth rather than its value. Children were not included in the study at a specific point in their diseases which might affect their QoL, and loss of follow-up may be associated with selection biases.

Conflict of interest

The authors declared that there is no conflict of interest in this study.

Ethical consideration

The scientific and ethics committees of the College of Medicine at the University of Sulaimani in Sulaymaniyah, Iraq, approved this study (No. 80-UoS on May 5, 2021). All procedures used in this study comply with the Declaration of Helsinki. On the other hand, after explaining the purpose of the study, consent forms were obtained from parents, and parents were assured that they were free to participate in the study and could leave at any time without affecting their child's treatment.

Funding source

This study has not received any grant or fund from any national or international company, University, or organization and is entirely self-funded.

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The authors declare no competing interests.

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Assessment of Quality of Life and Socioeconomic Inequality in Children with Cyanotic Congenital Heart Disease in Sulaymaniyah, Iraq

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