Health Related Quality Of Life in Children with Autism Spectrum Disorder (ASD) in

Bangladesh

Presented byDr. Farhana Safa

ID:14-98079-3Department 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• Religion2) Autism Spectrum Disorder (ASD) Dependent variable:• Health related quality of life (HRQL)

Conceptual framework

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.

Methods and materials

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 chosenstudy locales are: 1) Willes Little Flower School and College 2) Sky View Garden Apartment, and 3) Cordova International School and College

Sample size calculationSample 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

MaleFemale

Figure : Sex distribution of autistic children

74.1

24.9

MaleFemale

Figure: Sex distribution of normal children

Table 1: Distribution of Age of the children

96.5

3.5

IslamHindu

Figure: Distribution of religion of autistic children

82.8

17.2

IslamHindu

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

0

5

10

15

20

25

30

5.3

1.8

28.1

14

24.626.3

Figure: Distribution of educational status of respondents in autistic children group

secondary higher secondary

graduate post graduate0

5

10

15

20

25

30

35

40

45

50

5.2

19

29.3

46.6

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

unemployedHousewifeAgricultural workerGovt. servicePrivate serviceBusinessmanretired

Figure: Distribution of occupational status of respondents in autistic children group

20.7

12.1

39.7

27.6

HousewifeGovt. servicePrivate serviceBusinessman

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.

10000-25000 25001-50000 50001-75000 75001-100000

100000+0

10

20

30

40

50

60

15.8

54.4

17.5

8.83.5

0

48.3

39.7

12.1

0

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 71.8

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

8.80-45-910-1415-19

96.6

3.4

0-45-9

Figure: Total emotional function of autistic child

Figure: Total emotional function of normal child

0-45-9

10-1415-20

0

10

20

30

40

50

60

70

80

90

100

autistic

normal0 3.5

45.6 50.9

100

00

0

autisticnormal

Figure: Total social function of both autistic and normal child

0-4 5-9 10-14 15-200

10

20

30

40

50

60

70

80

90

100

17.5

43.938.6

0

100

0 0 0

autisticnormal

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

AutisticNormal

6.040.10

5.2810.10 0.000

Emotional Health Summery

AutisticNormal

9.771.79

3.1281.373 0.000

Social Health Summery

AutisticNormal

14.5100

2.86100 0.000

School Health Summery

AutisticNormal

8.120.45

3.6010.626 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.

Occupationalstatus

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)

Table reveals that 63.2% percent respondents of 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

Autistic Normal Total X2 P-Value

Frequency per Frequency per Frequency per

5.17 a 0.01710000-50000 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)

Table reveals that 70.2% percent respondents of 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

Autistic Normal Total X2 P-Value

Frequency per Frequency per Frequency per

43.185 a 0.000Good 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 emotionalfunction

Autistic Normal Total X2 P-Value

Frequency per Frequency per Frequency per

95.894 a 0.000Good 03 5.3 56 96.6 59 51.3

Poor 54 94.7 02 3.4 56 48.7

** Fisher’s exact test with 2 tailed significance

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 socialfunction

Autistic Normal Total X2 P-Value

Frequency per Frequency per Frequency per

115.000 a 0.000Good 00 00 58 100 58 50.4

Poor 57 100 00 00 57 49.6

** Fisher’s exact test with 2 tailed significance

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 schoolfunction

Autistic Normal Total X2 P-Value

Frequency per Frequency per Frequency per

80.880a 0.000Good 10 17.5 58 100 68 59.1

Poor 47 82.5 00 00 47 40.9

** Fisher’s exact test with 2 tailed significance

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.

Thank you all