Health-related quality of life in children with neurodevelopmental disorders in Bangladesh

Abstract

Background:

Neurodevelopmental disorders (NDDs) are chronic disorders considered an emerging public health problem. This condition can markedly impair the Health-related Quality of Life (HRQoL). This study aimed to examine the HRQoL among children with NDDs.

Design and methods:

A cross-sectional study was conducted among 73 parents/caregivers of children with NDDs aged 2–12 years. Pediatric Quality of Life Inventory 4.0 Generic Core Scale was used to assess the HRQoL. A multiple linear regression model was performed to assess the association.

Results:

Among the 73 parents/caregivers, majority of their children fell into 2–4 year age group, with 70% being male. In contrast to other NDDs, this study highlights that the mean HRQoL scores for Cerebral palsy (CP), Down syndrome, Intellectual disability (ID), Motor disorders, and Neurogenetic disorders were below 50 on the 0–100 scale. The analysis of variance revealed a significant effect of NDD categories on the physical domain of QoL. Findings from regression analysis highlight that the physical functioning domain of QoL was significantly influenced by factors including age [ß: 2.44; 95%CI: (0.07, 4.81)], various NDDs, such as Attention-deficit hyperactivity disorder [ß: −25.54, 95%CI: (−43.12, −7.96)], Autism [ß: −25.44, 95%CI: (−41.51, −9.37)], CP [ß: −46.52, 95%CI: (−65.41, −17.62)], Down syndrome [ß: −42.33, 95%CI: (−63.28, −21.37)], ID [ß: −46.14, 95%CI: (−82.61, −9.67)] and motor disorder [ß: −77.07, 95%CI: (−103.32, −50.82)] and stable family income [ß: 16.37; 95%CI: (3.44, 29.29)]. This study also underscores that emotional functioning was significantly influenced by sex [ß: 18.27; 95%CI: (4.57, 31.97)], motor disorders [ß: −36.15, 95%CI: (−67.14, −5.16)], and social functioning was influenced by birth order 3rd/more [ß: 32.24;95%CI: (7.43, 57.04)].

Conclusions:

This exploratory study highlights that multiple factors may influence various domains of HRQoL, including physical, emotional, social, and school functioning in children, providing a foundation for future studies.

Keywords

Bangladesh children health-related quality of life neurodevelopmental disorders

Introduction

Neurodevelopmental disorders (NDDs) are chronic conditions considered an emerging public health problem and the current global burden of these disorders is gradually increasing.^1,2 The prevalence of individual NDDs varies widely across Asia. In Asia’s low- and middle-income countries (LMICs), 7.6 per 1000 children suffer from NDDs.³ Bangladesh, a low- to middle-income country with a rapidly growing population, also faces substantial challenges. The number of NDDs is also increasing over time and it is 7.1 per 1000 children in Bangladesh.⁴

Neurodevelopmental disorders are a group of disorders that affect the development of the nervous system, leading to abnormal brain function, which may affect emotion, learning ability, self-control, and memory.⁵ The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) defined NDDs as a group of conditions, with onset in the developmental period, typically characterized by developmental delays that produce impairments in personal, physical, social, academic, or occupational functioning.⁶ NDDs include autism spectrum disorders (ASD), attention-deficit hyperactivity disorder (ADHD), epilepsy, intellectual disability (ID), hearing impairments, visual impairments, and motor impairments, including cerebral palsy (CP).⁷ These varieties share common features, such as delays in functional or communication skills or both, and cause physical, learning, and behavioral problems.⁸ This condition typically manifests in early childhood and is characterized by a developmental deficiency that markedly impacts the health, well-being, and educational attainment of the affected child.^9–12

Quality of life (QoL) is a broad concept that incorporates a person’s physical health, psychological state, level of independence, social relationships, personal beliefs, and relationship to salient environmental features.¹³ The World Health Organization (WHO) defines quality of life as “individuals” perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns.¹⁴ According to the Centers for Disease Control and Prevention (CDC), health-related quality of life (HRQoL) is a multi-dimensional concept encompassing physical, mental, emotional, and social functioning, emphasizing how health status influences an individual’s overall QoL. The measurement of QoL is an important indicator and it is necessary for treatment purposes.¹⁵ This indicator offers a more comprehensive evaluation of the child’s well-being and everyday functioning, in contrast to standard clinical outcomes that mainly concentrate on symptom reduction or diagnostic status. This is crucial for informing patient-centered care, guiding service provision, and evaluating intervention effectiveness. Children with NDDs need special attention because they are more likely to experience mental and physical difficulties. Research and therapies for children with NDDs should consider HRQoL as a clinically significant outcome. In order to help these children, reach their full potential and integrate into society, primary care physicians should identify the issues early on and treat them appropriately. Health-related quality of life in children with NDDs is worse than that of their typically developing healthy peers. Being among the first to evaluate HRQoL in children with NDDs, Varni et al. found that children with NDDs had far lower scores for physical, emotional, social, and school functioning than their typically developing peers.¹⁶ If we look at the literature, we can see that most children with NDDs have a higher risk of worsening behavioral symptoms during any adverse situation than in any ordinary period. While global research on HRQoL in children with NDDs is growing, there remains a significant gap in evidence from low and middle-income countries, including Bangladesh.^17–21 Prior studies conducted in Bangladesh have examined HRQoL in children with autism spectrum disorder specifically, data remain scarce for other NDDs. Our study fills this gap by assessing HRQoL across multiple NDD categories, enabling domain-specific comparisons and exploration of socio-demographic influences. This method helps identify specific needs for intervention and assistance and offers a more thorough understanding of the many difficulties experienced by children in Bangladesh with various NDDs. Therefore, the objective of our present study is intended to assess the HRQoL in Bangladeshi children with Neurodevelopmental disorders (NDDs) using the Pediatric Quality of Life Inventory 4.0 Generic Core Scale (PedsQL).

Materials and methods

Study design

This study was implemented as a cross-sectional survey, utilizing an online community approach. In this study, we employed a convenient sampling method, given that it was an open survey. A total of 73 parents/caregivers of the children with NDDs were selected for the study. Due to the children’s young age and varying literacy levels, HRQoL was assessed through parent-proxy reports. The age range of children with Neurodevelopmental Disorders [Attention deficit hyperactivity disorder (ADHD), Developmental language disorder (DLD), Autism spectrum disorder (ASD), Intellectual disabilities (ID), Cerebral Palsy (CP), Communication disorders, Motor disorder, Neurogenic disorder, Down syndrome] were 2–12 years of either sex from Bangladesh. The study was conducted according to the CHERRIES (Checklist for reporting results of internet E-surveys) guidelines to ensure transparency and ethical conduct in online data collection.²² We used a Google questionnaire method (Google Forms) to create a semi-structured question and the associated link (google form link: https://docs.google.com/forms/d/1s3sif7A-WrpeVHXUfXCxI6ZlxI8xiWuMkTQkK55CtnA/edit) was then shared with the public by posting the link on various internet platform and social networks (i.e. Facebook) within forums dedicated to neurodevelopmental disorder (special child). Participation was voluntary, and no incentives were offered. The survey was conducted from September 2023 to January 2024. The online questionnaire had a short summary of the introduction, as well as comments about how participants could work on their own and remain anonymous, and extra notes to help fill it out. To ensure anonymity, the Google Form was set up not to collect any identifying information such as names, email or IP addresses. The option to require sign-in was disabled and all responses were submitted anonymously. The study questionnaire was developed in both English and Bangla. The Supplemental File shows the questionnaire for this study. The decision to utilize online methods for data collection was driven by the need to obtain self-reported information from parents independently, without any direct assistance or intervention from the investigators. Google forms was programed to present different versions based on the guardian’s input. When guardians entered their child’s age, the form automatically directed them to the version of the questionnaire tailored according to age group by using the “Go to section based on answer” feature. This approach ensured that participants only received questions relevant to their child’s age. Our study included patient and public involvement throughout.

Sample size calculation

The sample size was calculated by using the formula,

n = \frac{z^{2} \times p \times q}{d^{2}}

n = desired sample size

p = Expected proportion of the parameter

q = 1−p

d = degree of error = 5% = 0.05

z = value for the level of significance at 95%CI = 1.96

p	q	n
considering having good physical status among Bangladeshi children with autism²³ = 45.6% = 0.456 =0.46	1–0.46 = 0.54	381
considering having good learning ability among Bangladeshi children with autism²³ = 17.5% = 0.175 = 0.18	1–0.18 = 0.82	222
considering having good emotional status among Bangladeshi children with autism²³ = 5.3% = 0.053 = 0.05	1–0.05 = 0.95	73

While the study initially aimed for a maximum sample size of 381, only 73 participants completed the questionnaires, meeting the minimum threshold. Because there was sufficient statistical power, the study’s analysis was carried out.

Eligibility criteria

Inclusion criteria

Children with NDDs aged between 2 and 12 years.

Either sexes were considered.

Children with a neurodevelopmental disorder according to the classification and diagnostic criteria for mental disorders in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5; May 2013).

Exclusion criteria

Children or their parents are quitting in the middle of the study or unwilling to consent.

Data collection tools/Research instrument

Data were collected from the parents/caregivers of the children using a semi-structured pre-tested interview questionnaire by considering all possible variables according to information developed based on relevant literature. The questionnaire contained sociodemographic characteristics of children and their parents along with the questions used in the Pediatric Quality of Life Inventory 4.0 (PedsQL) to measure HRQoL. Various instruments have been developed to assess HRQoL in children with NDDs. The Pediatric Quality of Life Inventory (PedsQL) is a widely used instrument for assessing health-related quality of life in children and adolescents.²⁴ The PedsQL includes various domains that cover different aspects of a child’s functioning and well-being.²⁵ The PedsQL serves as a valuable tool for both clinical and research purposes, as it provides important insights into a child’s overall functioning and well-being across multiple domains. PedsQL involves a series of questions or statements completed by either the child or their parent/guardian. These questions ask for ratings on a scale to assess the child’s level of functioning or well-being within each domain.²⁵ Parent proxy report data for children 2–12 years were collected and utilized for the present study. The parents rated their children’s HRQoL over the past month on a 5-point Likert scale (0 = never a problem; 1 = almost never a problem; 2 = sometimes a problem; 3 = often a problem; 4 = almost always a problem). Items are reverse-scored and linearly transformed to a 0–100 scale (0 = 100, 1 = 75, 2 = 50, 3 = 25, 4 = 0) so that higher scores indicate better HRQoL. Parents/caregivers completed the questionnaire version that corresponded to their child’s age. The PedsQL comprises a physical health summary (physical health subscale- 8 items) and a psychosocial health summary (emotional-5 items; social-5 items; and school-5 items functioning subscales). By combining the scores from each domain, an overall measure of the child’s health-related quality of life was obtained.

Ethical approval and informed consent statements

Ethical considerations

This present study is a part of a graduate student’s thesis for the Master’s program at the Department of Public Health at North South University. The research proposal was defended in front of the faculty members and the Department Chair of the University. The study was done only for educational purposes and this study was a not funded academic research. The study was approved by the ethics committee of ICDDR,B (Protocol Number # PR-23141) on June 30, 2023. All participant data was anonymized to protect personal identities and stored in encrypted databases accessible only to the investigator.

Consent to participate

In this research, an online survey was carried out among parents/caregivers of children with neurodevelopmental disorders. The consent form was provided with the online questionnaires, where the nature, purpose, and objective of the study were clearly stated. Written informed consent was obtained from all participants prior to study initiation.

Data and study variables

Dependent variable/outcome

Domains of Health-related Quality of Life (HRQoL) including physical functioning, social functioning, emotional functioning, and school functioning.

Independent variables/exposure

Socio-demographic factors included age of the participants (in years), sex, division, mother’s age (in years), family income (in BDT), h/o consanguinity in marriage, place of delivery, mode of delivery, delivery complication, and birth order of the child.

Statistical analysis

Data analysis was performed through statistical software, the “Stata SE 17.0 version.” We conducted complete case analysis, where only participants with complete data for all variables of interest were included in the final analysis. For categorical variables, data were presented using frequency with percentages (%). Mean with standard deviation (SD) was used for symmetrical continuous variables. A median with an interquartile range (IQR) was used for asymmetrical numeric variables. A one-way analysis of variances (ANOVAs) were done to examine the presence of association between socio-demographic characteristics (age group) and diagnosed NDDs with HRQoL. Finally, multiple linear regression model was employed to investigate the association of different NDDs and socio-economic variables with HRQoL. Beta co-efficient (ß) and their 95%confidence intervals (CI) were calculated to determine the strength and degree of association with p-values indicating statistical significance.

Results

Baseline characteristics

The study sample comprised 73 parents/caregivers, and the median age of their child was 4 years, with an interquartile range (IQR) of 3–6 years. Most of the children fell into the 2–4 years age group (see Table 1). The distribution of the study participants across age groups varied by sex. In the 2–4 years age group, there were 62.5 males and 37.5% females. The distribution across divisions revealed a predominant representation from the Dhaka division (70.42%), followed by Chittagong, Rajshahi, Rangpur, and Mymensingh divisions. The median age of mothers in the study, was 33 years, with an IQR of 29–37 years, with the majority falling within the 25–34 years (49.25%). A significant proportion reported no consanguineous marriage (n = 64, 94.12%), while a small percentage reported yes (n = 4, 5.88%). Analysis of family income reflected a median income of 40,000 BDT, with an IQR of 20,000–70,000 BDT. Among the study children, the distribution of birth order revealed a predominant representation of first-born children (64.71%) (see Table 1).

Table 1.

Baseline characteristics of the children with NDDs.

Characteristics	n = 73	%
Age group of the children
2–4 years	41	56.2
5–7 years	22	30.1
8–12 years	10	13.7
Sex
Male child	50	70.4
Female child	21	29.6
Division
Dhaka	50	70.4
Mymensingh	3	4.2
Chittagong	11	15.5
Rajshahi	4	5.6
Rangpur	3	4.2
Mother’s age group
18–34 years	37	55.2
35–55 years	30	44.8
Birth order of the child
First order	44	64.7
Second order	15	22.1
Third order or more	9	13.2
Diagnosed disease of the child
Attention deficit hyperactivity disorder	14	19.4
Autism	16	22.2
Cerebral palsy	10	13.9
Communication disorders	3	4.2
Developmental language disorder	10	13.9
Down syndrome	5	6.9
Intellectual disabilities	1	1.4
Motor disorders	3	4.2
Neurogenetic disorders	1	1.4
Children without confirmed diagnosis	9	12.5
Family income (in BDT) (Median, IQR)	40,000 (20,000, 70,000)
Delivery place and mode of delivery
Caesarian section at government hospital	6	8.8
Caesarian section at private clinic	50	73.5
Normal delivery at home	5	7.3
Normal delivery at private clinic	7	10.3
Any complications during/after delivery
No complication	49	73.1
Neonatal illness-requiring hospitalization	10	14.9
Perinatal asphyxia	5	7.5
Postnatal neurological or brain infections	2	2.9
Traumatic brain injury	1	1.5

n: frequency; %: percentage ;IQR: interquartile range.

Scale description

Internal consistency

Internal consistency, indicated by alpha coefficients for each age group are presented in Table 2. The majority of the parent proxy-report scales exceeded the minimum reliability standard of 0.7 required for group comparisons, while the total scale score across the ages approached or exceeded the reliability criterion of 0.8 recommended for analyzing individual patient scale scores (see Table 2).

Table 2.

Internal consistency for parent proxy-report of PedsQL 4.0 generic core scale for children with NDDs.

Parent proxy-report	2–4 years (n = 41)	5–7 years (n = 22)	8–12 years (n = 10)
Physical functioning	0.8	0.8	0.7
Emotional functioning	0.7	0.7	0.6
Social functioning	0.8	0.7	0.8
School functioning	0.8	0.4	0.8
Total score	0.8	0.8	0.8

Scale description for PedsQL 4.0 generic core scale by age group

Table 3 shows the physical, emotional, social, and school functioning analysis across different age groups. No significant association was found in one-way analysis of variance (ANOVA).

Table 3.

Scale description for PedsQL 4.0 generic core scale by NDDs.

Age group of the children	Physical functioning* Mean ± SD	Emotional functioning* Mean ± SD	Social functioning* Mean ± SD	School functioning* Mean ± SD
2–4 years	67.75 ± 24.98n = 39	52.72 ± 21.82n = 39	44.41 ± 26.25n = 39	45.24 ± 28.44n = 14
5–7 years	62.81 ± 22.78n = 20	48.25 ± 20.28n = 20	40.42 ± 20.18n = 21	51.07 ± 13.75n = 14
8–12 years	69.73 ± 21.01n = 10	50.50 ± 20.20n = 10	36.37 ± 29.71n = 10	57.00 ± 28.79n = 10
Neurodevelopmental disorders	Physical functioning** Mean ± SD	Emotional functioning* Mean ± SD	Social functioning* Mean ± SD	School functioning* Mean ± SD
Attention-deficit/ hyperactivity disorder	70.57 ± 22.97n = 14	46.15 ± 15.83n = 13	35.29 ± 23.65n = 13	55.77 ± 19.29n = 13
Autism	71.09 ± 16.90n = 16	57.81 ± 20.16n = 16	42.26 ± 27.36n = 16	46.94 ± 31.15n = 12
Cerebral palsy	37.85 ± 13.75n = 09	51.00 ± 13.29n = 10	50.00 ± 22.36n = 10	60.00n = 01
Communication disorder	86.46 ± 12.63n = 03	35.00 ± 35.00n = 03	54.44 ± 18.28n = 03	91.67n = 01
Developmental language disorder	74.65 ± 8.48n = 09	47.78 ± 20.17n = 09	32.00 ± 17.55n = 10	40.00 ± 18.61n = 04
Down syndrome	47.23 ± 24.98n = 05	45 ± 31.02n = 05	53 ± 31.54n = 05	40.00 ± 42.43n = 02
Intellectual disability	43.75n = 01	80.00n = 01	55.00n = 01	-
Motor disorders	45.09 ± 32.43n = 03	30 ± 13.23n = 03	21.67 ± 18.93n = 03	46.11 ± 11.34n = 03
Neurogenetic disorder	43.75n = 01	60.00n = 01	80.00n = 01	-
Children without confirmed diagnosis	92.45 ± 7.93n = 08	62.66 ± 23.36n = 08	45.16 ± 29.43n = 08	50.00 ± 0.00n = 02
Total	66.61 ± 23.64n = 69	51.10 ± 20.95n = 69	42.06 ± 24.93n = 70	50.48 ± 23.96n = 38

ANOVA, p ≤ 0.001; *ANOVA, p ≥ 0.05.

Scale description for PedsQL 4.0 generic core scale by NDDs

Table 3 highlights that Cerebral palsy, Down syndrome, Intellectual disability, Motor disorders, and Neurogenetic disorder demonstrated a quality of life below 50%, contrasting with other NDDs. And the Analysis of Variance (ANOVA) revealed a significant effect of NDDs category on the physical domain of HRQoL (see Table 3).

Association of various factors with different domains of quality of life

The unadjusted beta co-efficient (ß), along with their corresponding 95%confidence intervals (95%CI) and p-values for various factors influencing various domain of quality of life (Physical functioning, Emotional functioning, Social functioning, School functioning), are presented in Table 4.

Table 4.

Factors Influencing domain of HRQoL: Estimates from linear regression model (unadjusted model).

Variables	Physical functioning	Emotional functioning	Social functioning	School functioning
	Unadjustedß (95%CI)	Unadjustedß (95%CI)	Unadjustedß (95%CI)	Unadjustedß (95%CI)
Neurodevelopmental disorders (NDDs)
Children without confirmed diagnosis	Ref
Attention deficit hyperactivity disorder	−21.88* (−37.62, −6.14)	−16.50 (−34.80, 1.79)	−9.87 (−32.08, 12.35)	5.77 (−32.47, 44.01)
Autism	−21.35* (−36.73, −5.97)	−4.84 (−22.47, 12.78)	−2.89 (−24.30, 18.52)	−3.06 (−41.51, 35.40)
Cerebral palsy	−54.60* (−71.86, −37.34)	−11.66 (−30.97, 7.65)	4.84 (−18.61, 28.29)	10.00 (−51.66, 71.66)
Communication disorders	−5.99 (−30.04, 18.06)	−27.66 (−55.22, −0.09)	9.29 (−24.18, 42.76)	41.67 (−20.00, 103.33)
Developmental language disorder	−17.80* (−35.05, −0.54)	−14.88 (−34.66, 4.90)	−13.16 (−36.61, 10.29)	−10.00 (−53.60, 33.60)
Down syndrome	−45.22* (−65.47, −24.97)	−17.66 (−40.86, 5.55)	7.84 (−20.34, 36.03)	−10.00 (−60.35, 40.35)
Intellectual disabilities	−48.70* (−86.37, −11.02)	17.34 (−25.84, 60.52)	9.84 (−42.59, 62.28)	-
Motor disorders	−47.36* (−71.41, −23.31)	−32.66* (−60.22, −5.09)	−23.49 (−56.96, 9.98)	−3.89 (−49.85, 42.07)
Neurogenetic disorders	−48.70* (−86.37, −11.02)	−2.66 (−45.84 40.52)	34.84 (−17.59, 87.28)	-
Age (in years)	0.89 (−1.19, 2.97)	0.04 (−1.81, 1.90)	−0.43 (−2.64, 1.77)	1.55 (−1.12, 4.22)
Sex
Female child	Ref
Male child	2.58 (−10.15, 15.30)	15.80* (5.62, 25.98)	1.53 (−11.52, 14.57)	7.40 (−9.61, 24.42)
Mother’s age
18–34 years	Ref
35–55 years	−7.23 (−19.09, 4.63)	−2.42 (−12.35, 7.52)	−1.61 (−14.14, 10.92)	6.47 (−9.56, 22.50)
Birth order
First order	Ref
Second order	−6.72 (−20.92, 7.48)	6.28 (−6.62,19.18)	5.12 (−9.45, 19.69)	−2.78 (−21.97, 16.41)
Third order or more	−9.74 (−27.08, 7.61)	3.50 (−12.25, 19.25)	20.78* (2.97, 38.60)	−0.49 (−25.82, 24.84)
Family income (BDT)
<20,000 BDT	Ref
20,000–70,000 BDT	24.99* (9.36, 40.62)	9.96 (−3.79, 23.72)	1.32 (−16.69, 19.33)	20.20 (−3.74, 44.14)
>70,000 BDT	19.91* (1.69, 38.13)	1.17 (−14.49, 16.82)	−4.67 (−25.17, 15.84)	14.21 (−11.94, 40.36)

Linear Regression (p ≤ 0.05).

The adjusted beta co-efficient (ß), along with their corresponding 95%confidence intervals (95%CI) and p-values for various factors influencing various domain of quality of life (Physical functioning, Emotional functioning, Social functioning, School functioning), are presented in Table 5.

Table 5.

Factors Influencing domain of HRQoL: Estimates from linear regression model (adjusted model).

Variables	Physical functioning	Emotional functioning	Social functioning	School functioning
	Adjustedß (95%CI)	Adjustedß (95%CI)	Adjustedß (95%CI)	Adjustedß (95%CI)
Neurodevelopmental disorders (NDDs)
Children without confirmed diagnosis	Ref
Attention deficit hyperactivity disorder	−25.54* (−43.12, −7.96)	−15.38 (−36.65, 5.88)	−13.69 (−42.12, 14.72)	−25.22 (−75.91, 25.47)
Autism	−25.44* (−41.51, −9.37)	−10.33 (−29.30, 8.63)	−6.58 (−31.93, 18.77)	−35.00 (−83.07, 13.06)
Cerebral palsy	−46.52* (−65.41, −17.62)	−9.49 (−30.38, 11.39)	1.85 (−26.06, 29.77)	−10.44 (−84.56, 63.66)
Communication disorders	1.21 (−24.14, 26.02)	−9.80 (−39.75, 20.15)	19.53 (−20.49, 59.57)	41.43 (−12.79, 95.67)
Developmental language disorder	−16.98 (−35.56, 1.58)	−17.17 (−39.02, 4.68)	−14.72 (−43.92, 14.48)	−43.44 (−105.15, 18.27)
Down syndrome	−42.33* (−63.28, −21.37)	−9.46 (−33.96, 15.04)	8.61 (−24.14, 41.35)	−36.14 (−106.37, 34.10)
Intellectual disabilities	−46.14* (−82.61, −9.67)	14.30 (−28.28, 56.88)	11.55 (−45.36, 68.47)	-
Motor disorders	−77.07* (−103.32, −50.82)	−36.15* (−67.14, −5.16)	−24.49 (−65.91, 16.93)	33.10 (−94.68, 28.47)
Neurogenetic disorders	−23.23 (−60.30, 13.84)	20.05 (−24.03, 64.13)	47.54 (−11.38, 106.46)	-
Age (in years)	2.44* (0.07, 4.81)	0.96 (−1.77, 3.70)	0.43 (−3.23, 4.09)	19.39 (−10.49, 49.29)
Sex
Female child	Ref
Male child	10.36 (−2.00, 22.72)	18.27* (4.57, 31.97)	4.42 (−13.89, 22.74)	19.39 (−10.49, 49.29)
Mother’s age
18–34 years	Ref
35–55 years	−11.49 (−24.16, 1.18)	−11.71 (−26.33, 2.91)	−16.19 (−35.73, 3.35)	−4.53 (−31.45, 22.39)
Birth order
First order	Ref
Second order	0.35 (−12.54, 13.24)	4.05 (−10.86,18.97)	11.09 (−8.84, 31.0)	−7.09 (−32.31, 18.12)
Third order or more	11.80 (−3.90, 27.52)	10.36 (−8.19, 28.92)	32.24* (7.43, 57.04)	20.22 (−15.13, 55.57)
Family income (BDT)
<20,000 BDT	Ref
20,000–70,000 BDT	16.37* (3.44, 29.29)	12.26 (−3.72, 28.23)	10.36 (−10.99, 31.72)	1.75 (−29.06, 32.56)
>70,000 BDT	13.36 (−1.58, 28.29)	10.38 (−7.63, 28.39)	15.25 (−8.82, 39.33)	6.06 (−27.91, 40.03)

*Linear regression (p ≤ 0.05).

Physical functioning

Age had a significant association with the physical functioning of the children with NDDs. Table 5 indicates that age has a significant association with physical functioning scores. With one unit increase of age, the physical functioning score increases by 2.44 units (95%CI: 0.07, 4.81, p: 0.044), while all other variables remain constant. Regarding NDDs, ADHD [ß: −25.54, 95%CI: (−43.12, −7.96), p: 0.005], Autism [ß: −25.44, 95%CI: (−41.51, −9.37), p: 0.003], CP [ß: −46.52, 95%CI: (−65.41, −17.62), p: <0.001], Down syndrome [ß: −42.33, 95%CI: (−63.28, −21.37), p: <0.001], ID [ß: −46.14, 95%CI: (−82.61, −9.67), p: 0.014] and motor disorder [ß: −77.07, 95%CI: (−103.32, −50.82), p: <0.001] exhibited significant associations with physical functioning scores. Family income (20,000–70,000 BDT) has a significant positive effect on the physical functioning of the children with Neurodevelopmental disorders [ß: 16.37, 95%CI: (3.44, 29.29), p: 0.014].

Emotional functioning

The adjusted co-efficient, along with their corresponding 95%CI and p-values for various factors influencing emotional functioning, are presented in Table 5. Sex had a significant adjusted co-efficient of 18.27 (95%CI: 4.57, 31.97, p: 0.010), indicating that being male was associated with higher emotional functioning compared to females. Age doesn’t show any significant association with emotional functioning scores. Regarding NDDs, motor disorder exhibited significant associations with emotional functioning scores [ß:−36.15, 95%CI: (−67.14, −5.16, p: 0.023).

Social functioning

Regarding factors influencing social functioning, Table 5 showed age and sex don’t show any significant association with social functioning scores. Neurodevelopmental Disorders were also not significantly associated with social functioning scores. Children with higher birth order (third order or more) showed a significant positive association with social functioning [ß: 32.24, 95%CI: (7.43, 57.04), p: 0.012).

School functioning

While associations were found with physical, emotional, and social functioning, however, in our adjusted model, no significant association was observed with school functioning (see Table 5).

Discussion

This study was a cross-sectional study, which assessed the Health-Related Quality of Life (HRQoL) among children in Bangladesh diagnosed with Neurodevelopmental Disorders (NDDs) and compared the associated factors. The HRQoL of children with NDDs were assessed by using the PedsQL questionnaire developed by James Varni in the USA. Our study results highlighted that Cerebral palsy (CP), Down syndrome, Intellectual disability (ID), Motor disorders, and Neurogenetic disorder demonstrated a quality of life below 50%, contrasting with other NDDs and the NDDs category has a significant effect on the physical domain of HRQoL. This study also found that domain of HRQoL in children with NDDs was significantly influenced by factors including age, sex, NDDs, family income, and birth order of the child in the adjusted model.

The overall HRQoL of children with NDDs in our study is found to be lower in comparison with a reference study done by Viecili and Weiss and Sasinthar et al.^26,27 The findings of our study indicated that, in contrast to other NDDs, people with CP, Down syndrome, ID, motor disorders, and neurogenetic disorder had a quality of life that was below average. It is much lower than the average score of about 60% for children with ID in a study done by Sasinthar et al.²⁷ However, both groups’ scores are markedly below the HRQoL score of approximately 80% typically observed in healthy children, highlighting significant challenges faced by children with NDDs. Our study result supports the literature, implying that HRQoL is lower among the disabled population.^26–28

In our present study, we found a statistically positive association between physical functioning domain of HRQoL and age. It’s possible that older children with NDDs have had more time to develop their motor abilities, coordination, and general physical functioning. Adaptive equipment, assistive devices, and technologies help children develop their coping strategies, adaptive skills, and motor control over time. Findings from Sasinthar et al. correlate with our study result and support our finding on the positive relationship between age and HRQoL (ß: 0.012, 95%CI: −0.60, −0.76).²⁷ However, a study conducted by Wang et al. showed age was negatively associated with HRQoL, suggesting that younger scored higher on total HRQoL compared to older participants.²⁹

The effect of sex of children with NDDs on the HRQoL in our study had a significant association with emotional functioning domain. Kim et al. suggest females were more likely to have experienced poor QoL than males (OR = 1.54, 95%CI: 1.05–2.26),³⁰ which supports our findings. There may be disparities in access to support services and resources for females with NDDs compared to males. Females may experience different family dynamics or caregiving experiences compared to males, which can affect their emotional well-being, sense of belonging, and overall quality of life. These cultural issues including social stigma against disabilities, a lack of public knowledge, and limited access to healthcare center needs to be considered while creating and providing support services. However, some studies indicate vice versa findings, while some indicate no effects of sex on the HRQoL scores.^27,31 Our study supports the study reporting that sex is an influencing factor for HRQoL.

Literature review revealed several categories of NDDs have a significant effect on HRQoL, and our study findings also found that NDD categories have a significant influence on the physical, and emotional functioning domain of HRQoL.²⁷ Children with different categories of NDDs face diverse challenges including communication difficulties (e.g. autism spectrum disorder, communication disorder), sensory sensitivities (e.g. autism spectrum disorder), executive functioning deficits (e.g. attention-deficit hyperactivity disorder), motor skills impairment (e.g. cerebral palsy), cognitive impairments (e.g. intellectual disability), emotional and behavioral issues, social isolation. Sasinthar et al. found that the degree of ID is the predictor of lower health-related quality of life of intellectually disabled children.²⁷

Family income of children with NDDs had significant association with the physical functioning domain of HRQoL in our study. Alrayes et al. reported family income level significantly influenced the psychological well-being of the children, which correlate with our findings.³²However, they also reported that child’s gender had influenced well-being.³² Our study is in line with this study by Alrayes et al. Our study findings highlight the need for targeted support such as physiotherapy, assistive devices, and caregiver services. A stable financial situation makes it possible to access opportunities for education, safe housing, wholesome food, and high-quality healthcare—all of which are essential for physical and mental well-being of children with NDDs.

The effect of birth order of the children with NDDs on the HRQoL in our study had a significant association with social functioning domains. In the Bangladeshi context, where extended family structures are common, birth order may play a unique role in caregiving dynamics. Children with older siblings often benefit from increased social exposure, role modeling, and peer learning, which foster social skills and confidence. Larger families provide additional opportunities for social play and shared responsibilities among siblings, promoting emotional support and teamwork that improves children’s social functioning and quality of life. Literature review also revealed that the birth order of the children has a significant effect on HRQoL.

It is important to recognize that HRQoL is subjective and can vary significantly among children with NDDs. Each child has unique strengths, challenges, and support systems in place, which can influence their HRQoL outcomes.³³ Our primary strength in this study is the results highlight the dynamic and multifaceted nature of child development, which is influenced by a complex interplay of biological, psychological, and environmental factors. To our knowledge, this is the first study to assess HRQoL across multiple NDDs categories in Bangladeshi children using parent-proxy reports, offering domain-specific insights that address a significant gap in the regional literature. Nevertheless, the study has several limitations that should be considered. The relatively small sample size may restrict the generalizability of findings and some associations might not have reached significance due to sample size constraint. Broader comparisons across NDDs categories and sociodemographic subgroups may be inadequate since the sample size was dependent on a single parameter—the emotional status of children with autism. Given the small sample size and minimal missing data, inclusion of multiple predictors may affect model reliability; thus, the findings are best regarded as exploratory. Low internal consistency in the school and emotional subscales limits the reliability of findings. As a cross-sectional study, it provides a snapshot rather than longitudinal insights. Besides, the use of online recruitment methods may introduce selection bias, as individuals without internet access or those less familiar with technology might be underrepresented. Due to young age and limited literacy, HRQoL was assessed via parent-proxy reports, which may introduce potential bias, as parental perceptions may differ from the child’s experience. Despite these challenges, this research remains crucial for understanding the complex interplay between various factors and QoL of children with NDDs, especially given the dearth of data from our country’s perspective. Longitudinal studies that follow children with NDDs over time are necessary to better understand the dynamic nature of HRQoL and the factors that contribute to positive or negative changes.³⁴

Conclusion

In conclusion, the HRQoL of children with neurodevelopmental disorders is a complex and multifaceted concept. This exploratory study findings highlight that physical, emotional, social, and school functioning in children with neurodevelopmental disorders are influenced by multiple factors with statistically significant association with variables such as age, sex, neurodevelopmental disorders, and family income and birth order of the child. These findings are preliminary and hypotheses-generating, providing a foundation for larger, more representative studies utilizing hospital or community-based recruitment methods. In future, longitudinal and larger studies are warranted to enhance the well-being of children with NDDs in Bangladesh.

Supplemental Material

sj-docx-2-phj-10.1177_22799036251395264 – Supplemental material for Health-related quality of life in children with neurodevelopmental disorders in Bangladesh

Supplemental material, sj-docx-2-phj-10.1177_22799036251395264 for Health-related quality of life in children with neurodevelopmental disorders in Bangladesh by Jinat Alam, Tanjila Alam Sathi, Rukaeya Amin Sobi, Md. Imteaz Mahmud and Mohammad Delwer Hossain Hawlader in Journal of Public Health Research

Supplemental Material

sj-pdf-1-phj-10.1177_22799036251395264 – Supplemental material for Health-related quality of life in children with neurodevelopmental disorders in Bangladesh

Supplemental material, sj-pdf-1-phj-10.1177_22799036251395264 for Health-related quality of life in children with neurodevelopmental disorders in Bangladesh by Jinat Alam, Tanjila Alam Sathi, Rukaeya Amin Sobi, Md. Imteaz Mahmud and Mohammad Delwer Hossain Hawlader in Journal of Public Health Research

Footnotes

Acknowledgements

The authors would like to thank all the participants, their parents, and the caregivers for their valuable voluntary contributions to completing the study. The author gratefully acknowledges the Mapi Research Trust for providing free access to the PedsQL questionnaire, enabling its use in this unfunded academic research project.

Abbreviations

ADHD: Attention-Deficit Hyperactivity Disorder; ASD: Autism Spectrum Disorder; CI: Confidence Interval; CP: Cerebral Palsy; ERC: Ethical Review Committee; HRQoL: Health-Related Quality of Life; ID: Intellectual Disability; IRB: Institutional Review Board; NDDs: Neurodevelopmental Disorders; OR: Odds ratio; PedsQL: Pediatric Quality of Life Inventory; QoL: Quality of Life; WHO: World Health Organization.

ORCID iDs

Jinat Alam

Tanjila Alam Sathi

Author contributions

JA: conceptualization, data curation, statistical analysis, writing—original draft. TAS: data curation, statistical analysis, writing—original draft. RAS: statistical analysis, writing—original draft. MIM: writing—review and editing. MDHH: conceptualization, supervision, writing—review and editing. All the author(s) read and approved the final manuscript.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

All relevant data are within the manuscript and will be made available on request.

Supplemental material

Supplemental material for this article is available online.

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