Caregiver-reported health-related quality of life of children with cerebral palsy and their families and its association with gross motor function: A South Indian study

Introduction

Cerebral palsy (CP) is a group of disorders which is permanent but not unchanging; it involves a disorder of movement and/or posture and of motor function; it is due to a nonprogressive interference/lesion/abnormality; this interference/lesion/abnormality is in the developing/immature brain.[1] CP is a chronic motor disabling condition with a prevalence rate of 1.2–2.5/1000 school age children as per various studies,[23] but there is no data specific to India. CP is often associated with epilepsy, musculoskeletal problems, behavioral, sensorial, cognitive, and communicational disorders.[45] All these various comorbidities have a serious negative impact on the lives of children with CP.[67] They spend 2.2 times the amount of time in outpatients when compared with other normal peers, also requiring complex and integrated health care,[89] thus reinstating the fact that the treatment and care of such children can be burdensome to parents thereby leading unstable family conditions and inability to cope with the problem. Therefore, quality of life (QOL) in children with CP is a tool for assessing the effectiveness of the treatment of CP.[10]

Health-related QOL (HRQOL) is considered a multidimensional construct that embraces several domains of physical and psychological well-being.[1112] In children, HRQOL includes parental impact and family functioning along with the concepts of illness, functional status, mental health, and comfort.[13] Self-reporting is said to be the gold standard for HRQOL assessment in pediatric population, but it may be difficult to obtain reliable information from children with severe intellectual impairments or significant communication problems as in children with CP.[14] In this sense, some authors have suggested the possibility to assess children's HRQOL by using reports from proxies (parents, health, and teachers).[1516] Indeed, several studies have used parent's reports to assess HRQOL in pediatric population with CP.[1314] There are various types of disease-specific and generic measures available for assessment of HRQOL. Disease-specific tool would be more appropriate in measuring the morbidity.

Lifestyle assessment questionnaire-CP (LAQ-CP) is a disease-specific caregiver (proxy) questionnaire developed for evaluating the impact of disability in children with CP and their families. Mackie et al. developed this questionnaire to assess the impact of impairment and disability on children with CP and on their families. This questionnaire is considered to be a reliable tool in measuring the QOL experienced by children with CP in North England.[17] Studies on HRQOL in children are scarce, and studies on CP children are even scarce in India. This study not only gives a picture of CP children in India, but also tells about the quality of health care provided to them.

Subjects and Methods

Results

One hundred children participated in this study as per the inclusion criteria, out of which boys were 61 and girls were 39 with male: female ratio of 1.5:1. The mean age group being 4.8 years. Bilateral spastic CP cases were predominant 69 (69%), followed by unilateral CP 26 (26%), and dyskinetic CP 5 (5%). Severity of motor dysfunction based on GMFCS are as follows: Level I - 17 (17%), II - 28 (28%), III - 19 (19%), IV - 13 (13%), and V - 23 (23%). Other demographic, birth, etiological, and nutritional characteristics and associated comorbidities are mentioned in Table 1.

Table 1 Demographic characters

Mean LAS score was 45.107 (95% confidence interval 40.85–49.36). Thirty-three (33%) children had good LAS, 22 (22%) had mildly affected LAS, 24 (24%) had moderately affected LAS, and 31 (31%) had severely affected LAS.

Children with dyskinetic and bilateral spastic CP had higher LAS score when compared with children with unilateral spastic CP. Mean LAS scores in male and female children were almost same. Children with comorbidities such seizures, deformities, and behavioral problems had higher LAS scores. A significant association is present between GMFCS and LAS scores [Table 2]. There is a significant correlation between GMFCS and physical independence, mobility, clinical burden, and social integration dimensions. LAS scores have a positive correlation with physical independence, mobility, clinical burden, and social integration dimensions, and have no association with age and sex of child.

Table 2 Statistical analyses of lifestyle assessment questionnaire-cerebral palsy results

Discussion

This study evaluates the HQROL of CP children and their families and also analyzes its relationship with severity of motor dysfunction based on GMFCS levels. This study infers that 33% of children had good HRQOL and 22% had mildly affected HRQOL, whereas 45% had moderately to severely affected HRQOL. The mean LAS score was 45.07. An Indian study by Dobhal et al.[21] using similar questionnaire had a mean LAS of 56.6 and two-thirds of the children were moderately–severely affected which is high when compared with our study, probably the children enrolled in that study had higher GMFCS levels or did not get better delivery of health services. A Malaysian study by Lim and Wong[22] using the same questionnaire but applied on small sample, had mean LAS of 44.89 which is similar to that our study, just reiterating a point that all developing nations have similar health delivery systems in place.

There is a clear association of GMFCS with LAS, which actually measures HRQOL. This fact that severity has a negative impact on HRQOL is also supported by other studies,[22232425] but a Nigerian study by Tella et al.[26] differs stating that the children adapt to their decreased HQROL from beginning as they do not experience better QOL later in life. GMFCS levels have every strong correlation with physical independence, mobility, clinical burden, and social integration dimensions. Physical independence, mobility, clinical burden, and social integration dimension have negative impact on HRQOL of CP child. Many previous studies[2122] have similar opinion.

The economic burden impact on HRQOL was not significant, same as in Dobhal et al., for most services delivered were either free or subsidized. Unlike Dobhal et al., where the clinical burden on HRQOL was not significant, in our study the clinical burden had a significant influence on HRQOL as the hospital stay was more in severely affected children for they were subjected to surgeries (if needed), therapies and other rehabilitative measures, and it also contributed to increased parental stress.

Schooling impact on HRQOL was minimal as most children enrolled where aged below 5 years and attended preschool facilities near home and severely physically challenged children stayed at home. Social impact of CP on their HRQOL is the most important factor, as social implications on a CP child are enormous. There is undue stress on family in care, upbringing of a CP child. Parents of CP child require frequent health care facilities more often than other peers' parents. Moreover, there is some sort of restriction of social life in such parents. This is evident in our study also.

There is no significant association between LAS and age/sex of the CP child, this finding is consistent with other studies.[2122] However, children with comorbidities such as seizure, deformities, visual and hearing impairment, behavioral disorders such as attention deficit hyperactive disorder and autism have poor HQROL, which is also evidenced in other studies.[212224]

Children with dyskinetic and bilateral spastic CP had poorer HRQOL when compared with unilateral spastic CP, probably due to severity of motor impairment in the associated dyskinetic and bilateral spastic CP. Therapies targeting the improvement of dimensions such as physical independence, mobility, and social integration will definitely improve the HRQOL in CP children.

Conclusion

HRQOL in CP and their caregivers is highly impaired. The degree of impairment is associated with physical independence, mobility, clinical burden, and social integration dimensions. Therapies targeting these domains may improve the HRQOL in these children. GMFCS is a good indicator of HRQOL in CP children. Many more studies should be undertaken for better understanding of QOL in CP children and for improving the same.