Health Related Quality of Life with Children of Autism Spectrum Disorder in Bangladesh

Health Related Quality Of Life in Children
with Autism Spectrum Disorder (ASD) in
Bangladesh
Presented by
Dr. Farhana Safa
ID:14-98079-3
Department of Public Health
American International University, Bangladesh (AIUB)
January 8, 2016

Introduction
• Autism Spectrum Disorder (ASD) sometimes
referred to as “autism”.
• It 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”

• Quality Of Life is a broad concept incorporating
the person's physical health, psychological state,
level of independence, social relationships,
personal beliefs and their relationship to salient
features of the environment.
• The importance of quality of life (QoL) is widely
recognized in many fields, including economics,
social sciences, and medicine.

• Measurement of QOL is important indicator.
• It is necessary for treatment purpose.
• Usually autistic children have lower quality of life
in comparison to normally developing peers.
• In Bangladesh, measurement have not done yet.

Background information
• Autistic Disorder, Asperger’s Disorder and PDD-
NOS are collectively known as Autism Spectrum
Disorder. (DSM-5)
• Autism spectrum disorders (ASD) are complex
neurodevelopment disorders characterized by
qualitative impairments in three domains-
-Social interaction
-Communication and
-Repetitive, stereotyped behavior.

• About 1 in 68 children has been identified with
autism spectrum disorder (ASD) according to
estimates from CDC's (ADDM) Network.
• ASD is almost 5 times more common among
boys (1 in 42) than among girls.
• ASD has great impact on the affected child and
his/her family's quality of life.
• Lifetime cost for an individual with ASD at $3.2
million.

Justification of the study
• 1 child in 500 in Bangladesh has autism.
• Approximate number of children with ASDs in
Bangladesh is no less than 280,000.
• General attitude towards autism is mostly
negative.
• It is considered as a social barrier.
• Treatment facility is not properly available.
• Measurement of QOL have not done yet.

Research hypothesis:
• Health related quality of life in children with
Autism Spectrum Disorder (ASD) is poor in
comparison to normally developing peers in
Bangladesh.
General objective:
• To assess the HRQL in children with ASD (8-12
years) by using the Modified Pediatric Quality Of
Life inventory 4.0 Generic Core Scale.

Specific objectives
• To estimate the socio-demographic
characteristics of children with ASD.
• To assess the HRQL in children with ASD (8-12
years) by using the Modified Pediatric Quality Of
Life inventory 4.0 Generic Core Scale from
parent’s perspective.
• To assess the HRQL in normally developing
peers by using the same scale and compare it
with ASD children.

List of variables
Independent variable:
1) Variables related to socio-demographic status:
• Age
• Gender
• Occupation of parents
• Monthly family income of parents
• Educational status of parents
• Religion
2) Autism Spectrum Disorder (ASD)
Dependent variable:
• Health related quality of life (HRQL)

Operational definitions
• Health: Health is a state of complete physical,
mental and social well-being and not merely the
absence of disease or infirmity. (WHO)
• Quality of life: 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.(WHO)

• Children: The United Nations Convention On
the Rights of the Child defines child as "a human
being below the age of 18 years unless under
the law applicable to the child, majority is
attained earlier.
• Autism spectrum Disorder or autistic
spectrum describes a range of conditions
classified as neurodevelopmental disorder.
(DSM-5)

Literature review
• Literature review was done appropriately by
using
- Books
- Journals
- Magazines
- Internet
- Library documents etc.

Study design:
Cross sectional comparative study.
Study population:
Children age group 8-12 years, both ASD and
normally functioning peers.
Study period:
July 2015- December 2015. The total study
period was six months. A prior work schedule
was prepared on the basis of different tasks.

Study locale
• 3 centers of Dhaka city which are dealing with
autistic children.
1) Bangladesh Protibondhi Foundation (BPF),
Kalyani.
2) SWID Bangladesh and its sister wing Ramna
Protibondhi Shongstha.
3) Institute of Neuro-develpment and Research
Centre.

For normally developed children the chosen
study locales are:
1) Willes Little Flower School and College
2) Sky View Garden Apartment, and
3) Cordova International School and College

Sample size calculation
Sample size was calculated from study population
by using the formula: n= z2pq / d2
Where, n= desired sample size.
p= 0.5 (as there is no reasonable estimate
of any prevalence rate, we use 50%).
q = 1-p = 1-0.5 = 50%
d = degree of error (absolute precision of
the study assumed 0.05)
z = the reliability co efficient at the 95%
Confidence Interval = 1.96.
Thus required sample size is 385.

Study sample
• Considering the complexity of the study and my
definitive age group (8-12 years), my feasible
study sample was 115.
• 57 ASD children and 58 normally developing
peers were chosen as my study sample.

Eligibility criteria
Inclusion criteria:
• Have one of the three ASD diagnoses (e.g.
autism disorder; pervasive developmental
disorders, not otherwise specified; or Asperger
disorder).
• Are not suffering from other complicated
diseases.
• Parents of autistic child who are willing to
provide data.

Exclusion criteria:
• Are not diagnosed as ASD.
• Suffering from other diseases
• Parents of autistic child who are not willing to
provide data.

Development of Research Instrument
• A semi structured interview questionnaire was
prepared.
• Developed on the basis of relevant literature.
• The questionnaire was pre-tested and evaluated
thoroughly.
• Necessary revision and adjustment was done
accordingly.
• It was prepared in both Bangla and English.
• 80% were close ended & 20% were open ended
questions.

Data collection procedure
• Data was collected from the parents in the
institution premises by face to face interview.
• Two or three visits within a 4-week period at the
location of six study places were done.
• During the first visit, eligibility criteria was
confirmed.
• During the second visit, the PedsQL was
administered.
• Interviewing the parents (either father or mother)
according to scale was required 20 min each.
• In a day I collected data from 15 participants.

Data analysis
• Data analysis was done according to the specific
objectives of the study.
• Data was entered into computer using SPSS 20 version.
• Then relationship between the variables was established
by mean, median, mode, standard deviation and t- test.
• After that MLR (Multiple Logistic Regression) was done
to assess the strength of association between the
variables.
• For inferential statistics, mainly one way ANOVA, and
Pearson’s correlation was used.
• In all the tests p˂0.05 was considered to be statistically
significant.

Data presentation & interpretation
• Data was presented by:
-Tables
-Graphs
-Chart
-Statistical interference.
• Easy demonstration was
done for general understanding.

Results and Findings
• A cross sectional comparative study was carried
out among 115 children, 57 of them were
diagnosed as Autistic children.
• Data was collected from the parents of autistic
and normal children.
• My respondents were very much cooperative
and responded well.
• There was no missing data.
• Data are presented through tables and figures.

Socio-demographic characteristics of respondents
77.2
22.8
Male
Female
Figure : Sex distribution of autistic children

74.1
24.9
Male
Female
Figure: Sex distribution of normal children

Table 1: Distribution of Age of the children

96.5
3.5
Islam
Hindu
Figure: Distribution of religion of autistic
children
82.8
17.2
Islam
Hindu
Figure: Distribution of religion of normal
children
Figures represent that majority of the respondents (96.5%) of autistic
children’s parents were Muslims and so as normal children’s parents
(82.8%) and rest were Hindus

5.3
1.8
28.1
14
24.6
26.3
0
5
10
15
20
25
30
can sign
only
primary secondary higher
secondary
graduate post
graduate
Figure: Distribution of educational status of respondents in autistic
children group

5.2
19
29.3
46.6
0
5
10
15
20
25
30
35
40
45
50
secondary higher
secondary
graduate post graduate
Figure: Distribution of educational status of respondents in normal
children group

Previous 2 figures show that major proportion of
respondents (50.9%) was in the educational
level of Graduate & Post graduate in autistic
group and 75.9% in normal group. Educational
status among the respondents of normal child is
higher than the respondents of autistic child.

1.8
61.4
1.8
14
14
5.3 1.8
unemployed
Housewife
Agricultural worker
Govt. service
Private service
Businessman
retired
Figure: Distribution of occupational status of respondents in autistic children
group

20.7
12.1
39.7
27.6
Housewife
Govt. service
Private service
Businessman
Figure : Distribution of occupational status of respondents in normal
children group

Previous 2 figures state that among 57
respondents of Autistic child group 61.4% were
housewives, service holder 28% (both govt. and
private) and rests were businessman
(5.3%),unemployed, retired and agricultural
worker (1.8% of each) whereas majority under
normal child group (51.8%) were service holder.

15.8
54.4
17.5
8.8
3.5
0
48.3
39.7
12.1
0
0
10
20
30
40
50
60
10000-25000 25001-50000 50001-75000 75001-100000 100000+
autistic
normal
Figure: Distribution of monthly family income of respondents of both
groups

This bar chart shows that monthly family income
of the respondents was ranging from 10000 to
100000+ taka. Higher proportion of the
respondents 54.4% and 48.3% had family
income 25001-50000 taka of Autistic and normal
child group respectively.

Quality of life related variable
0-4 5-9 10-14 15-19 20-24
45.6
36.8
8.8
7
1.8
Figure: Total physial function of
autistic children
0
10
20
30
40
50
60
70
80
90
100
100
0-4
Figure : Total physical function of
normal child

5.3
43.942.1
8.8 0-4
5-9
10-14
15-19
96.6
3.4
0-4
5-9
Figure: Total emotional function of
autistic child
Figure: Total emotional function of normal
child

autistic
normal0
10
20
30
40
50
60
70
80
90
100
0-4
5-9
10-14
15-20
0 3.5
45.6 50.9
100
0
0
0
autistic
normal
Figure: Total social function of both autistic and normal child

0
10
20
30
40
50
60
70
80
90
100
0-4 5-9 10-14 15-20
17.5
43.9
38.6
0
100
0 0 0
autistic
normal
Figure: Total school function of both autistic and normal child

Comparing Means of Autistic Children &
Normal Children
Characteristics Group Mean SD P-Value
Physical Health
Summery
Autistic
Normal
6.04
0.10
5.281
0.10 0.000
Emotional Health
Summery
Autistic
Normal
9.77
1.79
3.128
1.373 0.000
Social Health
Summery
Autistic
Normal
14.51
00
2.861
00 0.000
School Health
Summery
Autistic
Normal
8.12
0.45
3.601
0.626 0.000

Higher mean value for variables ‘Physical Function’ ,
‘Emotional Function’ , ’ Social Function’ , ‘School
Function’ indicates a lower quality of life . Here , Mean of
‘Physical Function’(Autistic Child)=6.04 >Mean of
‘Physical Function’(Normal Child) =0.10 ; Mean of
‘Emotional Function’(Autistic Child) =9.77 > Mean of
‘Emotional Function’ (Normal Child ) = 1.79 ; Mean of
Social Function (Autistic Child ) =14.51 >Mean of Social
Function(Normal Child ) =0;Mean of School
Function(Autistic Child ) =8.12> Mean of School
Function(Normal Child ) = 0.45 . Since the mean value
for all these variables is higher for autistic children than
for normal children, we can conclude that autistic children
enjoy a lower quality of life.

Association between groups and socio-demographic
status
Educational status Autistic Normal Total X2 P-Value
Frequency per Frequency per Frequency per
16.08 a 0.000Below H.S.C 20 35.1 3 5.2 23 20
H.S.C and above 37 64.9 55 94.8 92 80
**Fisher’s exact test with 2 tailed significance
Table : Association between educational status of the respondents with the group (autistic and normal)

Table reveals that 64.9% percent respondents of
autistic children are found whose educational status
is H.S.C and above while 94.8% respondents of
normal children are found who is in same status.
There is significant relationship between the
educations of respondents with autism as
p<0.001.

Occupational
status
Autistic Normal Total X2 P-Value
Frequency
per
Frequency per Frequency
per
9.46 a 0.002Employed 21 36.8 38 65.5 59 51.3
Unemployed 36 63.2 20 34.5 56 48.7
**Continuity Correction with 2 tailed significant
Table : Association between occupational status of the respondents with the group (autistic and normal)

autistic children are found who were
unemployed while 34.5% respondents of normal
children are found who is in same status. There
is significant relationship between the
occupation of respondents with autism as
p<0.05.

Monthly
Family income
5.17 a 0.017
10000-50000 40 70.2 28 48.3 68 59.1
> 50000 17 29.8 30 51.7 47 40.9
****Continuity Correction with 2 tailed significant
Table: Association between monthly family income of the respondents with the
group (autistic and normal)

autistic children are found whose monthly family
income Is within 10k-50k taka while 59.1%
respondents of normal children are found who is
in same status. There is significant relationship
between monthly family income of respondents
with autism as p<0.05.

Total physical
function
43.185 a 0.000
Good 26 45.6 58 100 84 73.0
Poor 31 54.4 0 00 31 27.0
** Fisher’s exact test with 2 tailed significance
Table: Association between total physical function of the children with the group
(autistic and normal)

Table shows that, only 45.6% autistic children
have good physical function where all the
normal children have also good physical
function. So, there is a significant association
between autism and physical function as
p<0.001.

Total emotional
function
Autistic Normal Total X2 P-
Value
95.894 a 0.000
Good 03 5.3 56 96.6 59 51.3
Poor 54 94.7 02 3.4 56 48.7
Table: Association between total emotional function of the children with the group (autistic
and normal)

Table represents that, 94.7% autistic children
have poor emotional function where only 3.4%
of the normal children are emotionally disturbed.
So, there is a significant association between
autism and emotional function as p<0.001.

Total social
function
Value
115.000 a 0.000
Good 00 00 58 100 58 50.4
Poor 57 100 00 00 57 49.6
Table ; Association between total social function of the children with the group (autistic and normal)

Table reveals that, no autistic children have good
social function where only all the normal children
are emotionally sound. So, there is an obvious
significant association between autism and
emotional function as p<0.001.

Total school
function
Value
80.880a 0.000
Good 10 17.5 58 100 68 59.1
Poor 47 82.5 00 00 47 40.9
Table: Association between total school function of the children with the group (autistic and
normal)

Table reveals that, 82.5% autistic children have
impaired or poor school functions where all the
normal children have good school function
according to the pedsQL scale. So, there is a
significant association between autism and
emotional function as p<0.001.

Table: Multiple Logistic Regression of Total Physical Function

Discussion
• This study set out to increase our knowledge of
children with ASD’s HRQL compared to typically
developing peers.
• Regarding HRQOF, I have found a significant
poorer QOL in children with autism in
comparison to normally developing peers from
parent’s point of view by using Pediatric Quality
Of Life inventory 4.0 Generic Core Scale.
• Higher mean value for variables ‘Physical
Function’ , ‘Emotional Function’ , “Social
Function” , ‘School Function’ indicates a lower
quality of life .

• Chi square test was done and each of the 4
domains – total physical, emotional, social and
school function shows significant difference as p
value is less than 0.001.
• Multiple Logistic Regression was done to
strengthen the association and that was also
found statistically significant.

Data Quality Management
• Data quality management was done in every
stages of research.
• During the data collection in the field, data was
checked and re-checked for data consistency.
• After the data entry, data was checked again for
ensuring there was no missing information as
well as inconsistent by comparing the raw data
and the entry data.
• Data filtration was also done again after the
statistical test.

Study Limitations
• The study population was a specific group (8-12
years children) of the country, does not include
all the age groups of ASD.
• Not merely represent the general population of
the country.
• I did not include all the ASD children in our
study, so the study did not contain the overall
HRQL of ASD children.

Ethical issues
• Ethical clearance was obtained from the
university authority.
• Informed written consent (ICF) was taken.
• Data secrecy part was assured to every
participant.
• No one had been forced to provide data unless
they give it deliberately.
• Privacy of the respondents was maintained
during data collection.

Work statement July August September October November December
Topic selection
and proposal
submission
Approval of
proposal
Literature review
Development of
research
instrument &
pretest
Data collection
Data compilation
& analysis
Report writing
and editing
Printing and
submission
July – December, 2015

Conclusion
• This study is the first to estimate HRQL in
children with ASD in Bangladesh as compared to
normally developed peers, from the parent’s
point of view.
• Children with ASD reported having lower HRQL
than peers, which was confirmed by parents.
• Autism Spectrum Disorder has been, and
continues to be, a major health issue in our
current society.
• This study will help the policy makers contribute
in implementing different strategies for improving
health status of autistic children.

Recommendation
• Improve educational Setting.
• Improve functional Skills.
• Individualized Educational Plan (IEP) should be
incorporated.
• Training should be provided to teachers, aides,
and therapists.
• Providing education to family members.
• Siblings should also be monitored.

Acknowledgement
• My academic supervisor Prof. Dr. Md. Nazrul
Islam ph.D sir
• Dr. Ahmed Neaz, Advisor, Department of Public
Health of AIUB.
• All the faculty members of AIUB.
• My family members.
• My classmates.
• Respondents.

Health Related Quality of Life with Children of Autism Spectrum Disorder in Bangladesh

Health Related Quality of Life with Children of Autism Spectrum Disorder in Bangladesh

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