Quality of life in children with Down syndrome and its association with parent and child demographic characteristics: Parent‐reported measures

Abstract Background This study aims to explore the association between the quality of life (QoL) in children with Down syndrome (DS) and its relationship with demographic characteristics of both parents and children. The investigation encompasses five domains: physical and psychological well‐being, autonomy and parental relationship, social well‐being, and peers, as well as school and the learning environment. Method An online questionnaire, the KIDSCREEN‐27, was used to measure the QoL of 112 families with DS in Saudi Arabia, referred to as “Parent‐Reported Measures.” Descriptive statistics were analyzed using the Statistical Package for Social Sciences. Results The study found that the QoL of children with DS showed high scores in the psychological well‐being, autonomy, parental relations, school, and learning environment domains. However, the physical and social well‐being and peer domains had lower scores, although still considered “good scores.” Family income had a positively significant influence on all QoL domains. Specifically, higher family income was associated with better QoL outcomes, except for social well‐being. Parental age was found to influence psychological well‐being, while parental education and the relationship between the parent and child influenced social well‐being. Lastly, the child's gender was found to have an impact on the school and learning environment domain. Conclusion The study highlights the importance of understanding the impact of the demographic variability of children with DS and their parents on the QoL of their children. It emphasizes the need to address the needs of families with lower incomes and the importance of parental education and relationships with their children in improving social well‐being. The findings could aid policymakers and healthcare providers in improving the QoL for families with children who have DS.


| INTRODUCTION
Down syndrome (DS) is a genetic condition caused by the presence of an extra copy of chromosome 21, also known as "Trisomy 21" (Frederiksen et al., 2018).The condition is associated with intellectual disability and developmental delays, making it a leading cause of these conditions in children (Grieco et al., 2015).Maternal age is a wellknown risk factor for having a child with DS, with the risk increasing as women get older, especially in women over 40 (Frederiksen et al., 2018).
DS is linked to various chromosomal causes with morphological, biochemical, and physiological consequences (Alaama et al., 2015).In addition to intellectual disability and developmental delays, DS is associated with congenital cardiac abnormalities in more than 50% of newborns, an increased risk of both congenital and acquired thyroid disease, and a higher incidence of conditions such as hearing loss, diabetes, leukemia (Al-Aama et al., 2012;AlAaraj et al., 2019;Bergström et al., 2016;Manickam et al., 2016), obesity, gastrointestinal disorders, and obstructive sleep apnea syndrome (Basil et al., 2016;Lagan et al., 2020;Saadah et al., 2012).Individuals with DS show varying levels of intellectual disability, and Alzheimer's disease is a significant concern among adults with the condition (Fortea et al., 2021).As per American Academy of Pediatrics (AAP) guidelines (Bull & Committee on Genetics, 2011), children with DS require comprehensive care, including prenatal, natal, and postnatal support.Prospective mothers aged over 35 should also receive genetic counseling (GC) sessions to understand the associated risks and available support services (Aldhwayan et al., 2015;Schwartz & Vellody, 2016).
From the 1960s onwards, the significance of quality of life (QoL) has been a subject of debate in medical literature.With increasing life expectancy and medical advancements, its importance has grown.While various definitions of QoL highlight subjective elements such as life satisfaction, others emphasize more objective aspects like general well-being (Karimi & Brazier, 2016).The 1948 definition of health by the World Health Organization (WHO) encompasses the concept of QoL as not solely the absence of disease but also the presence of physical, mental, and social well-being, along with a harmonious relationship with the environment (Karimi & Brazier, 2016).
Personality traits and qualities that can be influenced by a person's activities or surroundings are referred to as demographic factors.The impacts of family income level and socioeconomic status on QoL have received a lot of attention lately (Currie, 2020).For instance, family income, ethnicity, and education level can affect the level of intervention and the child's overall QoL (Assari & Caldwell, 2019;Mohammed Nawi et al., 2013).
This study aims to provide valuable insights into the factors that could affect the QoL of children with DS in SA and could guide the development of interventions and policies to enhance their well-being.Genetic counselors in SA also face challenges in providing appropriate counseling and support to families of children with DS due to the scarcity of literature on the QoL of children with DS in the country.However, it is essential to acknowledge that the results may not be generalizable to other countries due to the diversity of cultural, social, and economic factors that may influence the lives of individuals with DS.Therefore, further research is necessary to explore effective strategies to promote the QoL of people with DS in various global contexts.This study's findings are crucial for genetic counselors and other healthcare professionals who provide care and support to families of children with DS, ultimately improving the QoL of children with DS in SA.
In his study, differences in demographics between children with DS and their parents were hypothesized to be linked to differences in the DS children's QoL.The study used the KIDSCREEN-27 questionnaire, which is a well-being.Lastly, the child's gender was found to have an impact on the school and learning environment domain.

Conclusion:
The study highlights the importance of understanding the impact of the demographic variability of children with DS and their parents on the QoL of their children.It emphasizes the need to address the needs of families with lower incomes and the importance of parental education and relationships with their children in improving social well-being.The findings could aid policymakers and healthcare providers in improving the QoL for families with children who have DS.

K E Y W O R D S
demographic data, Down syndrome, KIDSCREEN-27, quality of life well-known, reliable tool, used in more than 37 countries around the world.The original Arabic version of the questionnaire was requested from its source and used after it was validated on the Saudi population.The study assessed the instrument's validity through Pearson's correlation coefficient and confirmed it using the validity factor of Cronbach's alpha (α) and Bartlett's test.To the best of our knowledge, this is the first attempt to validate the Arabic version of the KIDSCREEN-27 on the Saudi population.Additionally, as far as known, this is the first study to measure the demographic variables on the reported QoL of children with DS.Upon reviewing the literature, studies that focused on this topic were lacking.Accordingly, this study aims to detect statistically significant effects in the link between differences in the QoL of children with DS and the demographic variables of these children and their parents.(e.g., parental age, parental education level, nationality, income, relationship to the child, and child's gender) by quantifying the range of reported QoL for children with DS in five domains: physical well-being; psychological well-being; autonomy and parent relationships; social well-being and peers; school and learning environment.

| Ethical compliance
The ethical approval for this study was filed with the institutional review board at the King Abdulaziz University Hospital (KAUH) in Jeddah after the preparation of the research proposal.The study was officially approved by the biomedical ethics and research committee at the King Abdulaziz University, Jeddah, Saudi Arabia (SA) .Informed consent forms accompanied each version of the questionnaire.Each participant was informed about the study, provided with the researcher's contact information, provided with information about confidentiality, how their data would be used and assured that they had the choice to participate or not before attempting to answer the first question.

| Recruitment
The present study aims to determine the relationship between quality of life (QoL) in children with DS and its association with parent and child demographic characteristics across five domains: physical and psychological well-being, autonomy and parental relationship, social well-being and peers, and school and the learning environment.The study was prompted by clinical observations made by genetic counselors working at a DS clinic at KAUH, in Jeddah, SA.This is a tertiary care teaching hospital in Jeddah, the second largest city in the Kingdom at the Mecca administrative region that holds a population of 6,915,006 (General Authority for Statistics, Kingdom of Saudi Arabia, 2010).The researchers hypothesize that the reported QoL of children with DS in SA is satisfactory, but that demographic variables, such as parental age, education level, nationality, income, relation to the child, and gender of the DS child, significantly affect their QoL.To assess these hypotheses, the researchers have formulated two research questions.The first research question seeks to determine the range of reported QoL of children with DS in five domains, including physical and psychological well-being, autonomy and parental relations, social well-being and their peers, the school, and the learning environment.The second research question aims to investigate whether there are statistically significant differences in the QoL of children with DS that can be attributed demographic variables of these children and their parents.The study is cross-sectional in nature and employs multiple approaches to analyze the data.The researchers aim to detect statistically significant effects of demographic variables on the QoL of children with DS, highlighting individual differences to guide genetic counselors and other healthcare professionals in tailoring practices to effectively meet the needs of parents and children while enhancing their QoL.

| Data collection method
A questionnaire was disseminated online through the Ministry of Education database, the Genetics Clinic at KAUH, and several social media groups on WhatsApp and Twitter, for parents of one or more children with DS in school (6-18 years) in SA.If a Caregiver who was not a parent or not living in the country, that person was excluded.

| Study tool
The Arabic version of KIDSCREEN-27 questionnaire (Appendix S1) was used for this study.The questionnaire contains 27 statements that respond to the five domains, including physical and psychological well-being, autonomy and parental relations, social well-being and their peers, the school, and the learning environment.Each participant specifies their response for each statement by selecting one of the five classifications excellent, very good, good, fair, and poor.Questions about demographic data of both the child and parent were included in the questionnaire (KIDSCREEN Group, n.d.).The demographic data collected for parents included their relation to the child (mother, father or parent), age (less than 30 years, from 30 to 40 years, more than 40 years), nationality (Saudi or non-Saudi), location of residence (Jeddah City, Mecca Province (excluding Jeddah City), Al-Madinah Province, Al Riyadh Province, Eastern Province, Al-Qassim Province, Asser Province, Northern Borders Province), education level (less than primary, primary, intermediate (Prep.),secondary, bachelor, postgraduate).And Total financial status of family (in Saudi Arabian Riyals), SAR 3000 or less, SAR 3001-6000, SAR 6001-10,000, more than SAR 10,000.
The demographic data collected for children with DS included the number of children with DS in the family (1 child, 2 children, 3 children), gender (female or male), age (6-18 years old), and the maternal age when the child with DS was born were also collected.To verify internal consistency of the questionnaire, the Pearson's correlation coefficient was calculated to determine the degree of correlation of each of the questionnaire expressions to the overall degree of the axis to which the item belongs on for 112 participants' data.

| Validity of the study tool
The study instrument validity was confirmed by using the validity factor of Cronbach's alpha (α), that is widely used measure of internal consistency or reliability of a survey instrument and Bartlett's test (112) for 112 participants' data.

| Data analysis
Table 1 shows mean values and corresponding QoL to be calculated for each domain.More specifically, percentages, arithmetic mean, and standard deviations for five domains will assess the range of QoL (poor, fair, good, very good, and excellent) based on the arithmetic mean of expressions and the weighted mean of the domain (Table 1), which answer the first question.
Based on the weighted mean approach, the Likert scale's fifth range in the KID SCREEN-27 questionnaire has been divided into five distinct sections, as outlined below: 1.The scale's minimum value was 1, denoting "not at all" or "never," while the maximum value was 5, indicating "extremely" or "always."Consequently, the range equates to 4 (5-1).2. To evenly segment the responses into five parts, the range was divided by 5, resulting in 0.8. 3. The value of 0.8 was established as the equal interval between the five sections, leading to the following divisions: This table shows the range of QoL and their corresponding mean values.A QoL score of less than 1.8 is considered poor, while a score from 1.8 to 2.6 is considered fair.A score from 2.6 to 3.4 is considered good, while a score from 3.4 to 4.2 is considered very good.A score above 4.2 is considered excellent.
The second research question requires a detailed examination of the statistical effect of each demographic variable on five QoL domains.Statistical Package for Social Sciences software was used for statistical analysis of descriptive statistics, including the mean, standard deviation, and correlation.Mann-Whitney and Kruskal-Wallis tests evaluated differences in QoL among DS children that could be attributed to these children and their parents' demographic variables.In all tests, a p-value of less than 0.05 indicated statistical significance.The Mann-Whitney test examined "differences between two groups on a single, ordinal variable with no specific distribution" (MacFarland

| Validating internal consistency
To verify the internal consistency of the questionnaire, Pearson's correlation coefficient was calculated to determine the degree of correlation of each of the questionnaire expressions to the overall degree of the axis/domain to which the phrases/questions belongs.The following tables show the correlation coefficients for each of the axes including the terms of expression.The total degree of the dimension is significant at the level of significance α ≤ 0.05.Table 2 indicates that the values of the correlation coefficient for each of the phrases/questions with their dimension are positive and statistically significant at the level of significance α ≤ 0.05.This indicates that the internal consistency in this axis is valid.
Table 3 indicates that the values of the correlation coefficient for each of the items with their dimension are positive and statistically significant at the level of significance α ≤ 0.05.This indicates that the internal consistency in this axis is valid.
Table 4 indicates that the values of the correlation coefficient for each of the items with their dimension are positive and statistically significant at the level of significance α ≤ 0.05.This indicates that the internal consistency in this axis is valid.
Table 5 indicates that the values of the correlation coefficient for each of the items with their dimension are positive and statistically significant at the level of significance α ≤ 0.05.This indicates that the internal consistency in this axis is valid.
Table 6 indicates that the values of the correlation coefficient for each of the items with their dimension are positive and statistically significant at the level of significance α ≤ 0.05.This indicates that the internal consistency in this axis is valid.

| Validity of the study tool
The study instrument validity was confirmed by using the validity factor of Cronbach's alpha (α) and Bartlett's test.
The following table indicates that the general validity coefficient is high.It measured 0.869 for Cronbach's alpha and 0.707 for Bartlett's test.This indicates that the questionnaire has a high degree of validity and can be relied on in this study (Table 7).
As shown in Table 9, of the 112 DS children, 47.3% were female, while 52.7% were male.96.4% of the children were the only child with DS in the family, while 1.8% had another DS member of the family and another T A B L E 2 Pearson correlation coefficient for first-axis (physical well-being) expressions with the overall grade of the axis/112 participants.

First domain: Physical well-being
Table 10 shows that the reported QoL of the children with DS on the physical well-being domain is "good" with an average of (3.36 out of 5.00).This average falls in the third category of fifth scale categories in the scale of weighted mean for QoL table (from 2.6 to 3.4).
The responses also indicated that the first question, "In general, how would your child rate her/his health?",scored the highest in terms of QoL with an average of (3.76 out of 5).On the other hand, the fourth question, "Has your child been able to run well?",scored the least in terms of QoL with an average of (2.99 out of 5).

Second domain: Psychological well-being
Data in this domain is approached with same previous procedure of data in the previous domain (physical wellbeing domain).
Table 11 shows that the reported QoL of the children with DS on the psychological well-being domain is "very good" with an average of (3.65 out of 5.00).This average falls in the fourth category of fifth scale categories in the scale of weighted mean for QoL table (from 3.4 to 4.2).
The responses also indicated that the sixth question, "Has your child felt lonely?", scored the highest in terms of QoL with an average of (4.1 out of 5).On the other hand, the first question, "Has your child felt that life was enjoyable?",scored the least in terms of QoL with an average of (3.49 out of 5).

Third domain: Autonomy and parent relation
Table 12 shows that the reported QoL of the children with DS on the autonomy and parent relation domain is "very good" with an average of (3.72 out of 5.00).This average falls in the fourth category of fifth scale categories in the scale of weighted mean for QoL table (from 3.4 to 4.2).
The responses also indicated that the fourth question, "Has your child felt that his/her parent(s) treated him/ her fairly?",scored the highest in terms of QoL with an average of (4.16 out of 5).On the other hand, the sixth question, "Has your child had enough money to do the same things as his/her friends?", scored the least in terms of QoL with an average of (3.49 out of 5).

Fourth domain: Social well-being and peers
Table 13 shows that the reported QoL of the children with DS on the social well-being and peers domain is "good" with an average of (2.79 out of 5.00).This average falls in the third category of fifth scale categories in the scale of weighted mean for QoL table (from 2.6 to 3.4).
The responses also indicated that the second question, "Has your child had fun with his/her friends?", scored the highest in terms of QoL with an average of (3.00 out of 5).On the other hand, the fourth question, "Has your child been able to rely on his/her friends?", scored the least in terms of QoL with an average of (2.53 out of 5).

Fifth domain: School and learning
Table 14 shows that the reported QoL of the children with DS on the school and learning domain is "very good" with an average of (4.17 out of 5.00).This average falls in the fourth category of fifth scale categories in the scale of weighted mean for QoL table (from 3.4 to 4.2).
The responses also indicated that the fourth question, "Has your child got along well with his/her teachers?",scored the highest in terms of QoL with an average of (4.64 out of 5).On the other hand, the third question, "Has your child been able to pay attention?",scored the least in terms of QoL with an average of (3.65 out of 5).
The table shows the mean and standard deviation for five different domains of reported QoL for children with DS.The domains include physical well-being, psychological well-being, autonomy and parental relation, social well-being and peers, and school and learning environment (Table 15).
The results indicate that the highest mean score for QoL was reported in the domain of school and learning environment (4.17), which was rated as "very good."The second highest mean score was reported in the domain of autonomy and parental relation (3.72), which was also rated as "very good."The psychological well-being of the children was also rated as "very good" with a mean score of (3.65).
On the other hand, the social well-being and peers domain had the lowest mean score of (2.79), which was still rated as "good."It is worth noting that this domain also had the highest standard deviation of (1.04), indicating greater variability in the responses for this domain.
The table provides the results of a study that investigated the relationship between different variables (parental age, parental education level, nationality, Financial Status, and Child's Gender) and various domains of wellbeing in children.The domains of well-being include physical well-being, psychological well-being, autonomy and parent relation, social well-being and peers, and school However, parental age did not have a significant effect on the other domains of well-being.Parental education level did not have a significant effect on any of the domains of well-being, although there were some trends suggesting that higher education levels were associated with higher mean ranks in some domains.
The results showed that there were no significant differences between Saudi and non-Saudi children in any of the domains.However, significant differences were observed in the physical well-being, psychological well-being, autonomy and parent relation, social well-being and peers, and school and learning environment domains based on financial status.Specifically, children with a financial status of SAR 3000 or less had significantly lower mean ranks in all domains compared to children with higher financial statuses.
In terms of gender, there were no significant differences in any of the domains between male and female children in the physical well-being, psychological wellbeing, autonomy and parent relation, and social well-being and peers domains.However, in the school and learning environment domain, female children had significantly higher mean ranks compared with male children.Overall, the study highlights the significant impact of financial status on child development, particularly in the domains of physical well-being, psychological well-being, autonomy and parent relation, social well-being and peers, and school and learning environment.Gender also appears to play a role in child development, specifically in the school and learning environment domain.

| DISCUSSION
DS is a common chromosomal disorder that is associated with a variety of attributes and challenges.These complications call for early interventions that are tailored to each individual's needs.Caring for a child with DS can pose various challenges because children with this disorder need special handling physically, mentally, emotionally, and financially, requiring guided knowledge and support to facilitate the parental approach to meet the variety of needs arising in the child's life.These different needs require skilled consideration from professionals in health care, education, and the community.Differences in demographic variables affect the QoL of a child with DS.
This study emerged after the researcher observed variations in the QoL of children with DS, in relation to demographic data of parents and their children who visited the Genetics Clinic, which the researcher also attended.We focused on detecting statistical significance of the demographic data on the reported QoL of DS children.As such, this study of demographic variables will introduce an understanding of the existing situation for children with DS and informatively guiding future interventions to effectively serve children and families, reducing the gap between the needed and available services.
Parents' reports of their children's QoL ranged from "good" to "very good" in all five domains.The physical well-being domain was positive significantly influenced by family income level.The psychological well-being domain was positive significantly influenced by family income and parental age.The domain of autonomy and parent relations was not influenced by any variable other than family income.The highest QoL was observed in the group of parents older than 40 years of age, and the lowest QoL was reported by the group under 30 years of age.

| The children's characteristics and their parents' preliminary demographic data
Participants' demographic data reveals that more mothers (76.8%) than fathers (23.2%) participated in the study.This finding is similar to that of Duggan et al. (2015), who found that mothers are more likely than fathers to engage with social media outlets to receive and provide parenting-related information and support.This conclusion could also explain the lack of participation among individuals who were approached via certain non-governmental organizations that target children with DS in the more conservative cities such as Jazan, Albaha, Najran, Tabuk, and Al-Jawf.Such a trend is especially understandable given the Saudi culture's unease with communication between genders and the tendency for mothers to be more involved than fathers in childcare (Al-Saggaf, 2016).The gender of the researcher (the researcher's gender is male) may have also contributed to this finding, as he was informed that certain social media groups were for women only, and he could not be added to those groups because of his gender.The areas of Jazan, Albaha, Najran, Tabuk, and Al Jawf are conservative compared to the more metropolitan communities of major cities (e.g., Eastern Province, Riyadh, Jeddah, and Mecca).
The study investigated the age of the mothers of our participants.Despite a known higher incidence of Ds in pregnant mothers >40, more infants are typically conceived at younger ages so most mothers with Ds are also younger.This was seen in in our study as well where 94 out of 112 participants with children with Ds were <40.This pattern is consistent with the National DS Society's postulation from 2020, which indicates that a higher birth rate among younger women results in approximately 80% of DS children being born to mothers under the age of 35 years.(NDSS, 2020).

| Range of children's QoL
Parental reports of the QoL of their children with DS ranged from "good" to "very good" in all five domains.These findings are somewhat similar to the findings of the Australian study on children with DS using the same tool.In that study, the children scored within normal ranges in all domains, excepts in physical and social well-being (Rofail et al., 2017).The physical well-being domain was significantly influenced by family income level.The lack of influence of other demographic variables on physical well-being was surprising, as other studies demonstrated that parental education influences the children's health (Diaz, 2020).This study shows how the highest QoL in the physical well-being domain was observed by a participant with less than primary school education, while the second highest was observed by individuals with only a primary school education.

| Psychological well-being
This domain was significantly influenced by family income and parental age.The family income level significantly influenced the psychological well-being of the children, agreeing with the China study that concluded that family wealth has a favorable impact on children's emotional well-being outcomes such as depression, hopelessness, helplessness, and meaninglessness.Second, the data reveals that family wealth is highly connected with parents' emotional well-being, which affects children's well-being (Qi & Wu, 2020).
The majority (60.7%) of participating parents were older than 40, and the highest QoL was present in this age group.Meanwhile, the lowest QoL was reported by the group under 30 years of age.This contradicts previous research that found no psychosocial advantage or disadvantage in relation to maternal age group and no impact of maternal age on emotional or behavioral well-being in early and middle childhood (Boivin et al., 2009).The connection between higher QoL and advanced parental age could be attributed to the accumulation of life experience with age, as this usually enhances a person's ability to cope with life stressors, especially social stigma, specifically for parents of children with special needs (Tilahun et al., 2016). 4.3.3| Autonomy and parent relations   This domain was not influenced by any variable other than family income.It has a positive correlation with high income, which may be attributable to insufficient community awareness, child and family factors, and autonomy for the DS child (Gilmore et al., 2016).When applied to the SA context, family dynamics generally do not support children's autonomy.According to the World Health Organization (2010), it is crucial to empower children and young people with intellectual disabilities who contribute to decision-making in their lives and autonomy ("Better health, better lives") (World Health Organization, 2010). 4.3.4| Social well-being and peers   This domain was significantly influenced by parental education.Higher education was linked to better social QoL.This could be attributed to parents with a high level of education being aware of the importance of friends and social sharing in increasing their children's cognitive abilities.This is in accordance with that of Assari and Caldwell (2019) who identified a positive correlation between parental education and the children's QoL, in which a higher parental education corresponded to a higher degree of social QoL (Currie, 2020).In addition, Erola et al. (2016) argued that parental education is critical in predicting the educational and social lives of their children (Erola et al., 2016).In contrast, Jung and Lee (2017) added regarding the child's functioning, which reflects on participation to factors influencing the child with DS QoL.It was noted that this domain was the only one not influenced by family income level (Jung & Lee, 2017). 4.3.5 | The school and learning environment domain It is significantly influenced by the child's gender.Results of this study suggest that females tend to report a better school environment than males, in agreement with a Turkish study that recorded higher job satisfaction among female teachers at the early childhood level.Job satisfaction of female teachers may be related to more enjoyment of the school environment with female children than their male counterparts (Şahin & Sak, 2016).Another study stated that female teachers formed close relationships with female students, but female teachers were less accepted by male students.However, male and female teachers had more difficulties in relationships with boys than with girls.(Spilt et al., 2012).This variation in school experience, based on the child's gender, might also be present in SA schools, implying a better school environment for female than male students.Furthermore, it is worth noting that in SA, schools are typically segregated by gender.Boys and girls attend separate educational institutions, except during the initial three stages of primary education.
The school and learning environment registered the highest QoL in the income group earning SAR 3000 or less, which is roughly equivalent to 800 USD.This warrants investigation and may be explained by how families with lower income experience greater appreciation for free services (Zun et al., 2018).Although there are few DS government schools and they are located only in the main cities, people with limited income are usually dependent on these schools, which may be more efficient than private schools used by high-income families.This theory is one possible explanation, and we agree with this, as we observed in our DS clinic that most of our patients studying in government schools were more active and cognitive than children in private schools.That may be attributed to the great interest in this category from the Saudi education ministry, government agencies such as the health ministry and community affairs ministry, and the financial and logistical support from the community, which are directed directly to developing and creating a comfortable and healthy environment in their government schools.However, many private schools in major cities compete with government schools in terms of quality and the active and cognitive abilities of their students, such as the "Help Centre" in Jeddah.As observed in our clinic, the cognitive.
Abilities of students at the "Help Center" in Jeddah are exceptional.This has also been indicated in some studies that suggest the quality of private education surpasses that of public education (Chordia et al., 2020;Das, 2017;Kingdon, 2020).

| Highlights
All QoL of children with DS was influenced by family income level except social well-being and peer domain.Physical and psychological well-being were positively correlated with income, while autonomy and parent relation were negatively correlated.These findings indicate that a higher income can be linked to a higher QoL (Table 16).This agrees with a previous study, suggesting a significant relationship between family income and acceptance of intervention, influencing the families' understandings of the strengths, abilities, and special needs of children with DS (Mohammed Nawi et al., 2013).
Demographic races and nationality did not influence all QoL domains, might be attributed to equality in government and private services for Saudis and non-Saudi people.

| Limitations
The study has several limitations that should be considered.Firstly, parental reports of their children's QoL can vary and may not fully capture the child's experience.Secondly, using a questionnaire for data collection introduces the possibility of self-reporting bias, where participants may provide answers that reflect their beliefs or preferences rather than their actual experiences.Thirdly, the researcher's gender may have limited the participation of mothers in the study in the more conservative cities such as Jazan, Albaha, Najran, Tabuk, and Al-Jawf, potentially limiting the study's sample and generalizability to all citizens in SA.Fifthly, the authors did not consider an aspect as important as the degree of intellectual disability in DS.Additionally, the study may have included mostly caring parents who are more involved in their child's life than those who are less concerned.Furthermore, demographic data related to a child's education (whether governmental or private) were not collected, despite its potential to affect the child's QoL.Finally, since the results were not corrected for multiple comparisons, the findings should be interpreted as exploratory and hypothesis-generating rather than definitive or conclusive.T A B L E 1 6 (Continued)

| CONCLUSION
This study explores the relationship between demographic variables of children with DS and their parents and the QoL of these children in SA.The discussion provides a detailed analysis of the study's findings and their implications.The results show that family income level had a significant positive influence on the physical well-being domain, while both parental age and family income level had a significant positive influence on the psychological well-being domain.However, the autonomy and parent relations domain were not significantly influenced by any variable other than family income.The study also reveals a higher participation rate of mothers than fathers The QoL of children with DS was found to range from "good" to "very good" in all five domains.The study's findings have significant implications for early interventions tailored to each individual's needs, the guidance and support required by parents, and the role of professionals in healthcare, education, and the community.These findings emphasize the significance of considering gender-related factors when conducting research in specific geographic areas, highlighting the necessity for more inclusive research practices.Furthermore, the study underscores the relevance of these variables for genetic counselors involved in managing children with DS.

4. 3 |
Influence of children with DS and their parents' demographic variables on each of the five QoL these children's domains 4.3.1 | Physical well-being

Section Range of quality of life Minimum Maximum Considered value
Pearson correlation coefficient for second-axis (psychological well-being) expressions with the overall grade of the axis/112 participants.Pearson correlation coefficient for third-axis (autonomy and parent relation domain) expressions with the overall grade of the axis/112 participants.
T A B L E 3 **Correlation is significant at the ≤0.05 level.T A B L E 4**Correlation is significant at the ≤0.05 level.T A B L E 5Pearson correlation coefficient for fourth-axis (social well-being and peers) expressions with the overall grade of the axis/112 participants.**Correlation is significant at the ≤0.05 level.
Pearson correlation coefficient for fifth-axis (school and learning) expressions with the overall grade of the axis/99 participants.*Correlation is significant at the ≤0.05 level.
T A B L E 6* Demographic data of participants.Personal characteristics of the child with DS.
T A B L E 8 Range of reported QoL in the domain of psychological well-being.
Range of reported QoL in the domain of social well-being and peers.
Range of reported QoL in the domain of school and learning.Ranges of children's quality of life on the five domains (physical well-being, psychological well-being, autonomy and parent relation, social well-being and peers, and school and learning environment) (as summary).
T A B L E 1 5 Influence of each demographic variables (parental age, parental education level, nationality, financial status, and child gender) on the five domains of quality of life (physical well-being, psychological well-being, autonomy and parent relation, social well-being and peers, and school and learning environment).
T A B L E 1 6