Introduction

Pediatric quality of life (PedsQL) is a multidimensional concept encompassing a child’s physical, emotional, social, and cognitive well-being, as well as the influence of cultural and familial factors.¹ According to the World Health Organization (WHO), it reflects a child’s perception of their position in life in the context of their goals, hopes, and concerns.

Cerebral palsy (CP) is widely acknowledged as the leading motor disability in children, affecting approximately 1.2% of children under 5 years of age globally, with over 98% residing in low-and middle- income countries.² It results from non-progressive brain damage sustained during the prenatal, perinatal, or early postnatal period. According to a population – based study carried out in a rural community in Sri Lanka reported a CP prevalence of 3.7% per, 1000 children aged 2 to 5 years, with 75% having severe impairment.³ To address the lack of comprehensive national data, the Sri Lankan CP registry pilot study was launched to improve documentation.⁴

CP significantly impacts the quality of life (QoL) by limiting participation in daily activities for both children and their families. Motor functional status and executive functioning are key determinants of QoL, while visual perception, cognition, communication challenges, and parental stress also play key roles.^5,6 Children with CP may also face various social and emotional challenges, including social rejection, depression, frustration, anxiety, and anger.⁷ Compared with typically developing peers, affected children often show scores across domains such as social participation, physical functioning, and general health, alongside difficulties with personal care and reduced activity involvement.^8,9 However, self-reported measures may underestimate these challenges due to differing perceptions.⁹

Caregiver burden significantly impacts parents’ physical and social well-being, autonomy, and financial stability.¹⁰ The QoL of parents of children with CP is lower than that of parents of healthy children, with daily activities and physical functioning being particularly affected.¹¹

Assessing QoL in this population is essential for informing clinical care, rehabilitation, and policy planning.¹² Condition-specific tools like the CP QoL-Child questionnaire improve assessment accuracy by targeting areas most affected by the disorder.¹³ Evidence also highlights the benefits of integrating QoL evaluation into routine care to support a holistic, person-centered approach. Notably, active participation in daily routines enhances psychosocial outcomes, especially among ambulatory children, underscoring the importance of promoting engagement through rehabilitation.¹³

Previous studies assessing QoL in children with CP have predominantly relied on parent-proxy reports, have not included healthy control groups, and often lacked comprehensive functional classification; some included only partial Gross Motor Function Classification System (GMFCS) assessment^14,15 while others did not apply any functional classification at all.^16,17

Our study aims to incorporate both child self-reports and parent-proxy assessments, compare QoL with that of age-matched healthy controls, and analyze whether functional abilities such as mobility, manual dexterity, communication, and eating and drinking skills are associated with QoL in children with CP.

Materials and methods

Study design and setting

An analytical cross-sectional study was conducted at the Teaching Hospital, Jaffna, Sri Lanka, a tertiary care center serving approximately 232,000 people in Jaffna District, one of the five districts of the Northern Province. The study was carried out over 13 months, from September 2023 to October 2024.

Participants

The study population comprised children diagnosed with CP (cases) and healthy controls who were individually matched for age (± 6 months), sex, geographical location (within a 1 km radius of the index case), and socioeconomic status. Children aged 2 to 16 years with a confirmed diagnosis of CP, characterized by a non- progressive motor disorder affecting movement, balance, and posture were included. The diagnosis was verified by the principal investigator through a review of medical records. Control participants who visited the outpatient department for minor acute self-limiting clinical conditions were recruited from the outpatient department of the same hospital and had no history or clinical evidence of neurological or motor impairment. Children with motor dysfunction due to peripheral causes and without evidence of an insult to the developing brain were excluded from this study.

Variables and measurements

The outcome variable in this study was health-related quality of life (HRQOL), which was assessed using the Pediatric Quality of Life Inventory (PedsQL™) 3.0 CP Module, a validated tool specially designed to evaluate the multidimensional aspects of QoL in children with CP. This instrument includes both child self-report and parent proxy-report versions. The parent-proxy report was used in cases where the child was unable to provide reliable responses due to cognitive or communication limitations.

It contains seven subscales with 35 items: nine on daily activities (self-care tasks such as dressing and toileting), four on school activities (use of school tools such as writing instruments and computers), five on movement and balance (physical mobility and postural control), four on pain and hurt (musculoskeletal pain and sleep interference), four on fatigue (tiredness and low energy), five on eating activities (ability to eat independently), and four on speech and communication (clarity and effectiveness of verbal expression).¹⁸

A 5-point Likert scale was employed, with 0 denoting that there was never a problem, 1 denoting that there was seldom a problem, 2 denoting that there was occasionally a problem, 3 denoting that there was frequently a problem, and 4 denoting that there was almost always a problem. Responses were scored in reverse and linearly transformed into a 0 – 100 scale (0=100, 1=75, 2=50, 3=25, 4=0) during data processing. To ensure that higher scores indicated better functioning and less impairment, the total score was calculated as the mean of item responses. The PedsQL™ 3.0 CP Module has demonstrated internal consistency reliabilities that generally exceed the minimum acceptable Cronbach’s alpha coefficient of 0.70.

The primary exposure variable for the case-control comparison was group status (CP vs. healthy children) while for the within-group analysis among children with CP, the exposure variables were the WHO-endorsed functional classification systems: Gross Motor Function Classification System(GMFCS), Manual Ability Classification System (MACS), Communication Function Classification System (CFCS), and Eating and Drinking Ability Classification System (EDACS).¹⁹ Each functional classification system categorizes children into five levels (I – V), with Level I representing the highest functional ability and Level V indicating the most severe limitations. For analysis, levels were grouped into two categories based on established definitions.

GMFCS classification

The GMFCS categorizes children based on self-initiated movements, such as sitting, standing, and walking. For analysis, children were grouped into two categories. Those in Levels I – II were classified as having independent mobility, meaning they could walk without limitations or with only minor difficulties. Children in Levels III – V were categorized as having dependent mobility, which includes walking with a handheld device, relying on a wheelchair, or having severely restricted self-mobility even with assistive technology.¹⁹

MACS classification

The MACS assesses how children use their hands to handle objects in daily life. Children classified at Levels I – II were described as having better manual ability, indicating that they could manage objects independently or with minimal difficulty. In contrast, those in Levels III – V were considered to have limited manual ability, often requiring assistance, the use of adapted tools, or being unable to manipulate objects effectively.¹⁹

CFCS classification

The CFCS evaluates how effectively children communicate with both familiar and unfamiliar individuals. Children in Levels I – II were categorized as having effective communication, meaning they could reliably convey messages across various contexts. Those in Levels III – V were classified as having restricted communication, characterized by inconsistent, unclear, or limited communication that often requires assistance or the use of alternative communication methods.¹⁹

EDACS classification

The EDACS classifies children’s safety and efficiency in eating and drinking. Those in Levels I – II were considered to have independent feeding ability, as they were able to eat and drink safely with little or no assistance. Children in Levels III – V were described as having assisted or unsafe feeding, which includes the need for significant help, the use of modified textures, or tube feeding due to safety concerns or inefficiency.¹⁹

Data collection

Data were collected by trained personnel using interviewer-administered questionnaires and validated clinical assessment tools during scheduled clinical visits. Demographic and perinatal information was obtained from caregivers and verified against medical and birth records when available. Eligible participants were identified through clinic records and selected based on predefined matching criteria. Interviews were conducted directly with the children when they were able to provide reliable responses; otherwise, interviews were carried out with their primary caregivers. All assessments were performed using standardized procedures to ensure consistency and data reliability across participants.

Sample size

Sample size was calculated based on a 1:1 matched case-control design. Assuming an exposure prevalence of 50% in controls, a correlation coefficient of 0.2 for matched pairs to account for within-pair correlation, a true odds ratio of 3, and 80% power with a 5% significance level, the required sample size was estimated to be 66 cases and 66 matched controls (total n=132).

Data analysis

Data analysis was performed using SPSS version 25. Descriptive statistics were used to summarize participants characteristics. Normality of continuous variables was tested using the Shapiro-Wilk test. As PedsQL™ 3.0 CP Module scores were not normally distributed, non-parametric tests were employed. The Mann-Whitney U test was used to compare QoL scores between cases and controls and across functional subgroups (GMFCS, MACS, CFCS, and EDACS). Results were reported as medians with interquartile ranges (25^th – 75^th percentile). Missing data were minimal and handled through pairwise deletion. No complex sampling strategies or sensitivity analyses were performed.

Ethical approval

This study was performed in accordance with the principles of the Declaration of Helsinki. The study protocol was approved by the Ethical Review Committee of the Faculty of Medicine, University of Jaffna (J/ERC/23/148/NDR/0301). Written informed consent was obtained from parents or legal guardians, and assent was obtained from children aged 5–16 years.

Results

The study included 132 children, comprising 66 with CP and 66 age- and sex-matched healthy controls. The mean age was 8.14 ± 2.80 years for the cases and 8.14 ± 2.72 years for the controls.

The median age was 7 years (interquartile range [IQR]: 6-10 years) in both groups. In each group, 34 (51.5%) were males, and 32 (48.5%) were female. The male-to-female ratio among participants was 1.1:1.

Table I presents the clinical characteristics of children with CP; the most common type was quadriplegic observed in 23 (34.8%) children, followed by diplegic in 21 (31.8%), hemiplegic in 7 (10.6%) children, athetoid CP in 1 (1.5%) child, and other types in 14 (21.2%), comprising mixed-type CP in 12 (18.2%) and cases that were not clearly classified by subtype in 2 (3.0%). Nearly 38 (57.6%) children used assistive devices. Based on GMFCS levels, 30 (45.5%) had independent mobility, while the remainder required assistance. Regarding manual ability, 42 (63.6%) had better handling skills. Nearly half of the children demonstrated effective communication (n=32, 48.5%), and 49 (74.2%) were independent feeders.

Table II highlights the differences between cases and controls. Preterm birth was significantly more common among children with CP (n=16, 22.9%), than among controls (p=0.006). Abnormal newborn examination findings were also significantly more common in the CP group (n=43, 65.2%), than in the control (p<0.0001). The type of questionnaire respondent also differed significantly between groups, with more parent reports in the CP group and more self-reports in controls (p<0.0001). No significant difference was observed in the mode of delivery (p=0.113).

Table III shows that QoL was significantly lower in children with CP compared with healthy children across all domains assessed by the PedsQL™ 3.0 CP Module. The median total QoL score in cases was 59.27 (33.80-77.41), markedly lower than that of controls, 100 (100-100), with this difference being highly significant (p<0.0001). The domains of daily activities, school functioning, movement and balance, fatigue, eating activities, and speech and communication showed significantly lower scores in cases than in controls (p < 0.0001). Although both groups reported high scores in the pain and hurt domain, the CP group still had a significantly lower scores (median: 100, IQR: 75 – 100) compared with controls (median: 100, IQR: 100 – 100) (p < 0.0001).

Table IV shows that children with lower functional abilities had significantly lower QoL scores across multiple domains. For example, those with dependent mobility had a lower median daily activities score of 0.00 (0.00 – 25.00) compared with 66.66 (46.52-86.81) in those with independent mobility (p <0.0001). Similarly, school activities were markedly lower in children with limited handling ability (median: 0.00, IQR: 0.00 – 15.63), compared to those with better handling ability (median: 75.00, IQR: 43.75 – 95.31) (p< 0.0001). Speech and communication scores were also significantly lower in children with restricted communication, , compared to those with effective communication, (median: 9.38, IQR: 0.00 – 31.25 vs. median: 96.88, IQR: 75.00-100.00; p<0.0001). Overall QoL scores were also significantly reduced in all lower-functioning subgroups (p < 0.0001). In contrast, the pain and hurt domain did not show statistically significant differences across any functional classification (p > 0.05).

Discussion

This study aimed to evaluate the QoL of children with CP compared with that of age-matched typically developing peers. The findings revealed significantly lower QoL scores across all domains for children with CP, underscoring the profound impact of the condition on various aspects of daily functioning. These findings are consistent with previous studies that have consistently shown that children with CP report lower QoL compared to healthy controls.^18,20,21 Similarly, a study from Türkiye found that children with CP have lower participation in out-of-school activities and reduced QoL compared to typically developing peers and that children with limited participation often show a strong preference for such activities, highlighting a gap between desire and opportunity.⁸ The median total QoL score was 59.27 in children with CP, which aligns with previous studies conducted in Pakistan, India, and South Africa.^14,15,17 In Indonesia, using the same PedsQL™ 3.0 CP Module, 76.9% of participants had impaired or poor QoL.¹⁶ In our study all 6 domains were affected, whereas the pain and hurt domain showed relatively high scores. This finding contrasts with several previous studies that reported consistently lower pain-related QoL scores among children with CP, suggesting that pain is a common and impactful symptom.²¹ A possible explanation for our differing result may be the way parents or caregivers interpreted pain. Recognizing pain in children may have been difficult in some cases.

Children with CP who had dependent mobility demonstrated significantly lower median QoL scores across all domains compared to those with independent mobility, a finding that has also been reported in other studies.^7,22 As the GMFCS level increases, it not only impacts the child’s functional abilities but also significantly contributes to a higher burden on caregivers. Caregivers of children with more severe motor impairments experience moderate to high levels of burden, with both GMFCS level and number of children being significant predictors.^10,23 Regarding mobility devices our study found that only half of the children with CP had access to mobility devices, while the remainder did not. These play a crucial role in enhancing the QoL and development of children with CP. These devices can improve independence and social participation across various settings.²⁴

As measured by the MACS classification, children with CP who had more limited manual handling abilities reported significantly lower QoL scores across multiple domains, particularly daily activities, school activities, eating, and speech and communication. A similar finding has been reported, with manual ability showing a strong correlation with HRQOL measures.²⁵ Several factors may contribute to poorer manual ability in children with CP, including the severity of fine motor impairment, the presence of spasticity or contractures, associated conditions such as cognitive disability and access to follow-up rehabilitation.²⁶

According to the CFCS, our study found that the greatest QoL difference was seen in the speech and communication domain, with lower scores among children with restricted communication. This finding is consistent with an Indian study reporting that functional levels, including communication abilities, are significantly associated with QoL in young children with CP.²⁷ Intellectual functioning and manual ability have been shown to significantly influence communication function in children with CP.²⁸

Based on the EDACS classification, children with CP who required assistance with feeding had significantly lower QoL scores compared with independent feeders. Eating activities and speech and communication showed the largest differences between groups. Similarly, an Indian study found that EDACS, along with other classification system, was an independent predictor of QoL impairment in young children with CP.²⁷ EDACS levels are strongly associated with dietary intake, with children at higher GMFCS levels showing lower energy and nutrient intake compared with those with less severe impairments.²⁹

Although no significant difference was found in the pain and hurt domain between cases and controls, this result may not accurately reflect the true experience of pain in children with CP. A large proportion of responses in the CP group were completed by parents through interviews rather than the children themselves, which may have led to underreporting particularly by children with limited communication abilities. This highlights the potential overestimation of well-being in this domain and underscores the need for future studies to incorporate observational and behavioral pain assessment tools. Such approaches are especially important when evaluating children with communication difficulties to ensure a more accurate understanding of their pain experiences.

The study was conducted with a limited sample size and at a single center. Therefore, the generalizability of the findings may be limited. Quality of life depends on several other factors such as seizures and cognitive impairment, which were not investigated in this study. Preterm birth was significantly more common in children with CP than in controls (p=0.006), indicating a potential baseline confounder. Parent-proxy reporting was also more frequent in the CP group (p<0.0001), which may have introduced reporting bias.

This study highlights the significant impact of CP on the QoL in affected children, as compared to their typically developing peers. Using the PedsQL™ 3.0 CP Module, children with CP demonstrated markedly lower QoL scores across all domains, with the greatest impairments observed in daily activities, school functioning, speech and communications, and eating and drinking abilities. Overall, the results emphasize the importance of comprehensive, multidimensional assessments when evaluating QoL in children with CP. Tailored interventions that address functional limitation and communication challenges are essential to enhance participation and well-being in this vulnerable population.

Ethical approval

The study was approved by the Ethical Review Committee of the University of Jaffna (date :27.09.2023, number: J/ERC/23/148/NDR/031).

Author contribution

The authors confirm contribution to the paper as follows: Study conception and design: MGS; data collection: VM, YS, KN; analysis and interpretation of results: MGS, VM, YS, KN; draft manuscript preparation: VM. All authors reviewed the results and approved the final version of the manuscript.

Source of funding

The authors declare the study received no funding.

Conflict of interest

The authors declare that there is no conflict of interest.