BY Ruwan Laknath Jayakody
The quality of life in eight to 12-year-old children with autism spectrum disorder who attend autism clinics in two major hospitals in the Colombo District is poor, with the psychosocial component being more affected than the physical component.
These findings were made in an original article on the “Quality of life of eight to 12-year-old children with autism spectrum disorder in the Colombo District: Perspective of primary caregivers” authored by Y. de Silva (attached to the Colombo South Teaching Hospital in Kalubowila) and S. Wijesekara (attached to the Sri Jayewardenepura University’s Medical Sciences Faculty) and published in the Galle Medical Journal 26 (4) in December 2021.
Autism spectrum disorder, as explained in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders: Fifth Edition (DSM-5), is a lifelong neuro developmental disorder characterised by impairments in social interaction, verbal and non-verbal communication, and a restricted repertoire of activities and interests. “Deficits in adaptive skills are seen in almost all children.” Per W. Moyal, C. Lord and J. Walkup’s “Quality of life in children and adolescents with autism spectrum disorders: What is known about the effects of pharmacotherapy?”, while some have intellectual disability, others have coexisting psychiatric disorders. The global/worldwide prevalence of autism spectrum disorder is about one in 54, according to the “Global prevalence of autism and other pervasive developmental disorders” by M. Elsabbagh, G. Divan, Y.J. Koh, Y.S. Kim, S. Kauchali, C. Marcín, C. Montiel-Nava, V. Patel, C.S. Paula, C. Wang, M.T. Yasamy and E. Fombonne, and J. Baio’s “Prevalence of autism spectrum disorders”. In Sri Lanka, the prevalence of autism spectrum disorder is, as found in H. Perera, K. Wijewardena and R. Aluthwelage’s "Screening of 18 to 24-month-old children for autism in a semi urban community in Sri Lanka”, around one in 93.
“Stress and psychological wellbeing are mental health related factors that are assessed in children with autism spectrum disorder. It is also essential to assess the quality of life of families with children with autism spectrum disorder.”
According to a “Position paper” from the World Health Organisation (WHO) assessing the quality of life, the latter is defined as an individual’s perception of their life in the context of the culture and value systems in which they live in and in relation to their goals, expectations, standards and concerns. “As this is a condition which persists during one’s entire life, maintaining a good quality of life in such children is essential. Though autism spectrum disorder is a lifelong neuro developmental disorder, the symptoms of affected children can be improved with intense therapy and the cooperation of the parents and the therapists, in order to reduce the impact on the quality of life of both the children and the parents.”
Hence, Silva and Wijesekara carried out a descriptive, cross sectional study among the primary caregivers of children aged eight to 12-years, who were primarily diagnosed with autism spectrum disorder, without any other coexisting illness including debilitating medical conditions, and were attending autism clinics in two major teaching hospitals in the Colombo District, over a period of two months. Autism spectrum disorder was diagnosed by a consultant paediatrician, psychiatrist or neurologist.
Data were collected using a questionnaire consisting of two parts, with Part A being an interviewer-administered questionnaire and Part B being the Paediatric Quality of Life Inventory (PedsQL) Questionnaire Version Four, of which, the proxy report to be completed by the caregiver, which is a survey with 23 questions, was used. The total PedsQL score for the report was the sum total average of item scores across four sub domains, namely, physical functioning (eight items), emotional functioning (five items), social functioning (five items) and school functioning (five items). The higher the scores, the better the health-related quality of life. A total score for each sub domain is obtained by taking a sum total average of the individual item scores within the sub domain, with higher scores representing better health-related quality of life. If the proxy reported PedsQL score is over 65, the health-related quality of life was considered as poor. Sub domain scores were also reported as physical functioning and psychosocial functioning, where the psychosocial sub domain is taken as a sum total average of the item scores from the emotional, social and school functioning sections of the questionnaire.
A total of 35 caregivers were included in the study sample. The majority of the caregivers were mothers. The mean (average) age of the children was 9.6 years. In terms of the children’s gender, the majority (65.7%) were boys. With regard to ethnicity, the majority (88.6%) of the children were Sinhalese. The majority (74.3%) of the children had siblings. The majority (88.6%) of the children attended school, with 34.3% attending a normal class in a normal school.
Of the PedsQL quality of life scores, the median (the middle number in a sorted, ascending or descending, list of numbers of a data set) total score was 64.44, which indicates a poor quality of life overall.
The median psychosocial functioning score (48) is lower than the median physical functioning score (81.25). When considering the sub-scale scores, the lowest quality of life was reported for the school functioning score (35) which was lower than the other sub-scales.
Of the participants, 71.4% had a good physical score while 28.6% had a poor physical score. Only 8.6% of the participants had a good psychosocial functioning score while 91.4% had a poor psychosocial functioning score.
The majority (51.4%) had a poor emotional functioning score while 77.1% and 88.6% of the participants had poor social and school functioning scores, respectively. Of the participants, 88% had a good physical functioning score but a poor psychosocial functioning score, while only 12% had both good physical and psychosocial functioning scores. All the participants who had a poor physical functioning score also had a poor psychosocial score. The majority (82.9%) of the children had a co-morbid condition. In the sample, 68.8% of the children who had attention deficit hyperactivity disorder (ADHD) as a co-morbid condition showed a poor quality of life overall score, while 57.9% without ADHD had a good quality of life.
In “Explaining the increase in the prevalence of autism spectrum disorders”, S. Hansen, D. Schendel and E. Parner pointed out that the increased prevalence of autism spectrum disorder is partly due to altered diagnostic criteria and assessment practices. However, despite such advances, children with autism spectrum disorder are, L.Gabis, J. Pomeroy and M. Andriola noted in “Autism and epilepsy: Cause, consequence, co-morbidity, or coincidence?”, still at risk of developing significant physical and psychiatric problems. “Having a good quality of life indicates positive perceptions of overall health, well-being and satisfaction with life experiences.”
Silva and Wijesekara’s study revealed that the eight to 12-year-old children in the Colombo District who were diagnosed with autism spectrum disorder had an overall PedsQL score of 64.44, which is poor, with a lower psychosocial score (48) compared to a physical score (81.25). The overall score of quality of life reported in this study by the caregivers of children with autism spectrum disorder was much lower than the overall scores described by the creators (J.W. Varni, M. Seid and P.S. Kurtin) of the PedsQL tool in healthy children (83) and in acutely (78.7) and chronically (77.2) ill children in the US. M. Danansuriya and L. Rajapaksa’s “Psychometric properties of the Sinhala version of the PedsQL™ 4 Generic Core Scales in early adolescents in Sri Lanka”, which assessed the quality of life using the PedsQL in children with asthma and healthy controls of 12 to 14-year-olds, reported higher overall PedsQL scores of 76.3 and 87.2, respectively. S. Gunawardana, C. Gunasinghe, M. Harshani and S. Seneviratne’s “Physical and psychosocial quality of life in children with overweight and obesity from Sri Lanka” which studied obese and overweight, eight to 12-year-old children in Sri Lanka using the PedsQL, showed an overall score of 80.4 and physical and psychosocial scores of 78.1 and 81.7, respectively. A. Katsiana, N. Strimpakos, V. Ioannis, E. Kapreli, M. Sofologi, E. Bonti, K. Stiliani and A. Stalikas’s “Health-related quality of life in children with autism spectrum disorder and children with Down syndrome” and B. van Heijst and H. Geurts’s “Quality of life in autism across the lifespan: A meta analysis” showed that the quality of life in autism spectrum disorder was not affected by the age of the children. Therefore, children with autism spectrum disorder in the Colombo District appear to have a lower quality of life in comparison to healthy Sri Lankan children and Sri Lankan children with diseases like asthma and conditions like obesity.
When considering the four sub-scale scores, the children in Silva and Wijesekara’s study had the lowest score in school functioning followed by social functioning, emotional functioning and physical functioning scores. According to the DSM-5, major manifestations of autism spectrum disorder include impairment in social communication and behavioural problems such as fixed interests and repetitive movements. This was seen, Silva and Wijesekara explained, when taking the sub-scale scores of the study into consideration.
Children with autism spectrum disorder experience poorer health-related quality of life across multiple domains (“Health-related quality of life in children with autism spectrum disorders and children with developmental language disorders” by C. Coales, N. Heaney, J. Ricketts, J.E. Dockrell, G. Lindsay, O. Palikara and T. Charman, which studied the health-related quality of life of 96 children with autism spectrum disorder, aged eight to 17-years, in comparison with 211 typically developing peers, showed that parents of children with autism spectrum disorder reported lower health-related quality of life scores across all domains, in comparison with the controls, while in a sample of 51, it revealed significantly low health-related quality of life across many dimensions). D. Sikora, P. Vora, D. Coury and D. Rosenberg’s “ADHD symptoms, adaptive functioning, and the quality of life in children with autism spectrum disorder” found that in children and youth with autism spectrum disorder, higher levels of behavioural, emotional and social problems were related to lower levels of health-related quality of life.
In Silva and Wijesekara’s study, 68.8% of the children who had ADHD as a co-morbid condition showed a poor quality of life overall score, while 57.9% without ADHD had a good quality of life, although this was not statistically significant. S. Egilson, L. Ólafsdóttir, T. Leósdóttir and E. Saemundsen’s “Quality of life of high functioning children and youth with autism spectrum disorder and typically developing peers: Self and proxy reports” records significantly lower scores on all PedsQL domains in young people with co-morbid ADHD symptoms in comparison with autism spectrum disorder alone. A Turkish study and K. Kuhlthau, F. Orlich, T.A. Hall, D. Sikora, E.A. Kovacs, J. Delahaye and T.E. Clemons’s “Health-related quality of life in children with autism spectrum disorders: Results from the autism treatment network” which compared the health-related quality of life in children and young adults, showed that the health-related quality of life levels were lower in the autism spectrum disorder groups than their control groups.
As there are no published data regarding the quality of life of children with autism spectrum disorder in Sri Lanka, multicentre studies with data from all over the island would help in getting an idea about the situation of children with autism spectrum disorder in rural and semi urban areas so that special programmes can be implemented in these areas in order to improve the quality of life in these children, Silva and Wijesekara elaborated.
“The cohort of children with autism spectrum disorder in this age group will be stepping into the society within the next few years; hence, it is important to implement strategies in order to improve the quality of life of these children in order to make them independent citizens.”
Poor quality of life for autistic children in Colombo: Local study
20 Mar 2022
Poor quality of life for autistic children in Colombo: Local study
20 Mar 2022