Department of Anatomy, Ibrahim Medical College,122,Kazi Nazrul Islam Avenue,Dhaka.
Department of Public Health, American International University-Bangladesh (AIUB),Dhaka, Bangladesh
Background and objective:
Autism spectrum disorder (ASD) is considered as an emerging problem in our
socioeconomic context. The objectives of this study
were to compare the health related quality of life of children with autism
spectrum disorder to that of typically developing peers.
Methods: A cross sectional
comparative study was conducted on autistic children and normal children in six
centers of Dhaka city to see the health related quality of life from parent’s perspective
by using the Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL scale). Total of 115 children within the age group of 8-12
years were selected, among them 57 were autistic and 58 were normal peers.
Results: Children with
autism spectrum disorder had poor physical (mean score 6.04), emotional (mean score
9.77) and social (mean score 14.51) functions as well as learning ability (mean
score 8.12) whereas normal children’s functioning mean scores were 0.10, 1.79,
0.0 and 0.45 in respective domains and the differences were significant (p<.0001)
in each aspect of quality of life.
study revealed that, children with autism spectrum
disorder experienced poorer health-related quality of life than normal children
and thus the findings would contribute in
implementing different strategies for improving the health status of autistic
IMC J Med Sci 2017; 11(2): 40-44
Correspondence: Dr. Farhana Safa, Lecturer,
Department of Anatomy, Ibrahim Medical College, 122 Kazi Nazrul Islam Avenue,
Shahbag, Dhaka, Bangladesh, Email:email@example.com
Autism spectrum disorder (ASD), sometimes
referred to as “autism” is a chronic disorder whose symptoms include failure to
develop normal social relations with other people, impaired development of
communicative ability, lack of imaginative ability, and repetitive, stereotyped
movements . ASD affected individuals have markedly different social and
emotional behaviors than non-autistic individuals. ASD also has an effect on
intelligent quotient (IQ). About 30% of individuals with autism have an average
or gifted IQ, while 70% are considered mentally retarded .
Health related quality of life in
children with ASD is poor than the normally developing peers. In developing countries
like Bangladesh, autism is considered as a curse. People of the society,
sometimes parents are also ignorant about their children’s physical and mental
condition. Moreover, institutions involved with the treatment and improvement
of the health of the autistic children cannot properly deal with problems
associated with autism. The last decade has witnessed a significant increase in
the utilization of health related quality of life (HRQL) instruments in an
effort to improve patient health outcomes and to determine the efficacy of healthcare
services [3,4]. HRQL explores the well-being of individuals with various
medical conditions and disabilities. Therefore, by using this scale we can estimate
the actual health condition of the autistic children (8-12 years) and compare that with the normal developing
child. The findings would be helpful
for the effective management of autistic
children. Therefore, the preset study was undertaken to find out the HRQL and
socio-demographic characteristics of children with autism.
Study population and place: This comparative cross sectional study
was conducted in three centers which deal with autistic children and comparison
was done with normal children from three other centers. Bangladesh Protibondhi
Foundation (BPF), Kalyani, Institute of Neurodevelopment and Research Centre
and Society for the Welfare of the Intellectually Disabled, Bangladesh (SWID
Bangladesh) and its sister wing – Ramna Protibondhi Shongstha was chosen for data
collection from parent of autistic children.
Total 115 children were selected for
the study. Among them 57 were autistic child and 58 were normally developing
peers. The age range of both autistic and normal children was 8-12 years. In this study, children of this age group was
selected because 8-12 years children are more appropriate for assessing the
questions used in Pediatric Quality of Life Inventory 4.0 Generic
Core Scales (PedsQL). Children with ASD were eligible to participate in the
study if (a) they have one of the three ASD
diagnosis e.g. autism disorder, pervasive developmental disorders not otherwise
specified or Asperger disorder, (b) they are not suffering from other
complicated diseases and (c) the parents of autistic child willing to provide
Research instrument: Data were collected
from the parents (either mother or father) of the children because the autistic
children could not provide the actual data that was needed and was collected by
a semi-structured pre-tested interview questionnaire by considering all possible
variables according to information, developed on the basis of relevant literature.
The questionnaire contained socio-demographic characteristics of children and
their parents along with the questions (modified) used in the PedsQL [5-8] to
measure HRQL. The parents rated children’s HRQL over the past month on a
5-point scale (“never a problem” to “always a problem”) scored from 0 to 4 with
lower scores indicating better HRQL. 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). During
calculation for each child’s total health summery in 4 domains, 0-4 was considered
as good and above 4 was considered as poor heath function.
Procedure of data collection: Before getting
started, permission for data collection was taken from every school. Data were collected
from the parents at the school premises by face to face interview. The data
collection for each participant required two or three visits within a 4-week
period at a location of six study places. During the first visit, eligibility
criteria were confirmed, and during the second visit, the PedsQL was
administered. Parents or school authority were bound to provide a copy of the
medical report documenting an ASD diagnosis. Healthy control children in the
peer group met the same inclusion criteria except for a diagnosis of the autism
spectrum. Ethical approval was obtained from institutional review board of American
International University, Bangladesh (AIUB). Informed written consent was
obtained from all participants and facilities involved in the study.
The study was carried out among 115
children, 57 of them were autistic (ASD) and rest were normal healthy children.
The ASD group comprised of 44 boys and 13 girls, with a mean age of 9.67±1.42 years.
The comparative healthy peer group comprised of 43 boys and 15 girls, with a
mean age of 9.66±1.40 years. Participating families of both groups belonged to
middle to higher socioeconomic status. In autistic group, 50.9% parents had graduate
and postgraduate level of education and it was 75.9% in normal group. Educational
status among the respondents of normal child was higher than the respondents of
autistic child. Of the total 57 respondents of autistic child group, 61.4% were
housewives, 28% service holder (both govt. and private) and rests were
businessman (5.3%), unemployed, retired and agricultural worker (each 1.8%)
whereas majority (51.8%) in control normal child group were service holder. Monthly
family income of the all respondents ranged from Tk.10000 to Tk. 300,000 taka. Of
the respondents of autism and normal healthy groups, 54.4% and 48.3%
respectively had monthly family income of Tk. 25001 to Tk. 50000 taka. The socio-demographic
characteristics of the parents of both groups were almost similar.
Table-1 shows that the children with
autism spectrum disorder had significantly higher mean scores for physical
(mean 6.04), emotional (mean 9.77) and social functions (mean 14.51) as well as
for learning ability (mean 8.12) compared to the normal children’s mean scores
which were 0.10, 1.79, 0.0 and 0.45 in respective domains. Higher mean value of
all these variables for autistic children than that of normal children
indicated that autistic children had very lower quality of life.
Table-1: The mean PedsQL score of
autistic and normal healthy children
Table-2 shows that, 54.4% autistic children had poor physical
function while all the children in normal group had good physical function. It
was found that 94.7% autistic children had poor emotional function whereas only
3.4% of the normal children were emotionally disturbed. Table 2 further shows that, no
autistic children had good social function whereas only all the normal children
were socially sound. Regarding learning abilities, 82.5% autistic children had
impaired or poor abilities while all the normal children had good learning
function according to the pedsQL scale. In all 4 domains of pedsQL scale there
was significant association of autism with poor quality of life (p<0.0001).
Table-2: Status of physical, emotional and social functions as well as
learning abilities of autistic and normal healthy children
The Center for Disease Control and
Prevention states that the prevalence of autism is increasing at epidemic rates
. For decades since first described by Leo Kanner in 1943, autism was believed
to occur at a rate of 4–5 per 10,000 children . From surveys done between
1966 and 1998 in 12 countries (e.g., United States, United Kingdom, Denmark,
Japan, Sweden, Ireland, Germany, Canada, France, Indonesia, Norway, and
Iceland), the prevalence ranged from 0.7–21.1/10,000 population, with a median
value of 5.2/10,000 (or 1/1923) . The most recent results from the Centers
for Disease Control and Prevention (CDC) suggest that, in the United States,
the prevalence of ASD is 1/70 boys and 1/315 girls, yielding an overall rate of
1/110 . This is nearly identical to the overall prevalence from a recent
British study . In our country it has been reported that out of every 94
boys, one is affected by autism. For girls, it is one in every 150. In
Bangladesh, no systematic research has been carried regarding the magnitude or
prevalence of autism but it is assumed that about 300,000 children are affected
Previous studies related to HRQOL of autistic
children tried to find out the agreement between children self and parent’s
proxy report as well as children’s QOL and result revealed lower QOL of autistic
group than normal peers. In this study, we have used the data from parent’s
perspective. This study set out to increase our knowledge of children with ASD’s
HRQL compared to typically developing peers from the parents’ perspective. The
study revealed significantly poorer HRQL for children with ASD than their peers
for the physical, emotional, social functions as well as learning ability at
school. Children with ASD had consistently poor performance in those
parameters. In relation to HRQL parameters it appeared that the children with
ASD had lower well-being, which should be addressed by service providers. This
confirms previous findings in children and adolescents with ASD and high
functioning autism (HFA), but uses a control group of typically developing children
instead of normative data [5,7,14-17].
ASD has been and continues to be a
major health issue in our current society. Significant numbers of children are
being diagnosed with ASD each year, and this includes young adults, indicating
a need to increase the understanding and awareness of the general public. This
study would help the policy makers and administrators to find out the actual condition
of autistic children in comparison to normal one and thus would contribute in
implementing different strategies for improving health status of autistic
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