Neuro-developmental Disorders in India – A … New Delhi, India 5. Child Development Centre, Medical College, Thiruvananthapuram, Kerala, India 6. Center for Autism and Developmental

Neuro-developmental Disorders in India – A Progress Report of the INCLEN Study

Arora NK1, Bhutani VK2, Durkin M3, Gulati S4, Nair MKC5, Pinto-Martin J6, Silberberg D7* and the INCLEN Study Group

1. The International Clinical Epidemiology Network (INCLEN) Trust International, NewDelhi, India 2. Department of Pediatrics, Division of Neonatal and Developmental Medicine, Stanford University School of Medicine and Lucile Packard Children’s Hospital, Stanford, CA, USA 3. Department of Population Health Sciences and Pediatrics, and Waisman Center, University of Wisconsin School of Medicine and Public Health, Madison, WI, USA 4. Child Neurology Division, Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, India 5. Child Development Centre, Medical College, Thiruvananthapuram, Kerala, India 6. Center for Autism and Developmental Disabilities Research and Epidemiology, University of Pennsylvania School of Nursing, Philadelphia, PA, USA 7. Department of Neurology, University of Pennsylvania School of Medicine, Philadelphia, PA, USA

INVESTIGATORS

Dr. Narendra Arora (Project Leader) Dr. MKC Nair (Principal Investigator) Dr. Jennifer Pinto-Martin (Co-PI) Dr. Donald Silberberg (Co-PI) Dr Sheffali Gulati (Network Coordinator and Site Principal Investigator))

NDD TEAM MEMBERS (Alphabetical wise)

Arun Singh J.C Gupta Poonam Natrajan Sunil Karande

A.K Niswade Jyoti Dhawan Rajesh Sagar Sanjay Rai

Alok Thakkar K.K Handa Rakesh Kumar Satinder Aneja

Arti Maria Maureen Durkin Ravindra Pandey Savita Sapra

Atul Prasad Monika Juneja Rohit Saxena Sharmila Mukherjee

B.C Das Madhuri Kulkarni Ritu Juneja Sunanda K

Bhadresh Vyas Muneer Massodi Rashmi Kumar Tanuj Dada

Devender mishra Manju Mehta Rashna das T.D Sharma

Faruque Ahmed Nandita Babu Rema Devi Veena Kalra

Gouri Devi Nidhi Singhal Sandeep Bavdekar Vijay Chandra

Gautam Bir Singh Paul Russell Santosh Mohanty Vinod Bhutani

GVS Murthy Praveen Suman mehta Saradha Suresh Vinod Aggarwal

Harikumaran Nair Poma Tadu Sujatha Thyagu Zia Chaudhary

Shobha Sharma Vaishali Deshmukh

Consensus Clinical Criteria (CCC)

Criteria for diagnosis of Neuro-developmental disabilities in children, based on – The best currently available evidence and / or – Consensus among national and international experts – Using minimal investigations – Serve the needs of resource-constrained settings

Neuro-developmental Screening Tool (NDST)

– Based on the existing “Ten Question Screen”

– Comprises 39 questions, covering areas beyond the

existing “Ten Question Screen” (e.g. Autism Spectrum Disorders, Learning Disorders, and Speech & Language Disorders)

Pre-piloting of NDST

Objective

• To access the content validity of each individual question and cluster of questions addressing specific domains.

• To organize the sequence of questions so as to facilitate

understanding and comfort for the respondents.

• To ascertain the sensitivity and cross-cultural applicability of various questions.

Pre-piloting of NDST

Methodology • The pre-piloting of the tool was carried at 9 centers in 5 Zones,

in various medical college hospitals where Technical Advisory Group (TAG) members were working.

• It was carried out on 325 children confirmed for NDD by Consensus clinical criteria and on 268 children without NDD .

• The NDST was translated in 5 languages (Hindi, Marathi, Tamil, Bengali and Khasi)

• The translated NDST tool was checked individually by local/ National TAG members as well as by the International TAG members.

Domains Addressed in NDST Draft

Serial no. Domains Total questions in each domainª 1. Autism 14 2. Learning Disorder 6 3. Attention Deficit and

Hyperactivity Disorder 3

4. Vision Impairment 6 5. Hearing Impairment 4 6. Mental Retardation 11 7. Speech and Language 3 8. Cerebral Palsy 3 9. Neuro-Muscular Disorders 5 10. Epilepsy 2

ª some questions screened more than one domain

Domains Disorder No. of Questions Cronbach’s alpha

1 ADHD 3 0.5422

2 Autism 14 0.8653

3 Cerebral Palsy 3 0.8357

4 Epilepsy 2 0.8905

5 Hearing Impairment 4 0.3993

6 Learning Disability 6 0.8058

7 Mental Retardation 11 0.8719

8 Neuromuscular Disorder 5 0.8878

9 Speech & Language Disorder 3 0.7194

10 Vision Impairment 6 0.4182

Reliability of the Draft Instrument (NDST)

Test Retest Reliability Tests (Questions=39)

Coefficient Range

Test Re-test*,@ New Delhi Thiruvananthapuram Combined Doctor RA* Doctor RA Doctor RA

> 0.5 - 0.6

6,38 (2) - 11 (1) 13 (1) - 13 (1)

0.61- 0.70 27 (1) 13,19,23 (3) 9 (1) 6,31,34 (3) 9, 11,27 (3) 6 (1)

0.71 – 0.80 2,11, 14,16, 17 (5) - -

2,7,15,19,33, 35 (6) 6 (1) 2,19 (2)

0.81 – 0.90 3,5,19,20,26, 31,35 (7)

1,2,9,11,12, 20,24,27,29, 32,33 (11)

14,17,18,28, 33,35 (6)

1,12,14,27,29 (5)

2,14,16,17,19,20,26,33,35 (9)

1,11,15,23,27 29,33,34,35 (9)

0.91 – 1.0

1,4,7,8,9,10, 12,13,15,18, 21,22,23,24, 25,28,29,30, 32,33,34,36, 37,39 (24)

3,4,5,6,7,8,1014,15,16, 17, 18,21,22,25, 26,28,30,31, 34,35,36,37, 38,39 (25)

1,2,3,4,5,6,7, 8,10,12,13,1516,19,20,21, 22,23,24,25, 26,27,29,30, 31,32,34,36, 37,38,39 (31)

3,4,5,8,9,10,11,16,17,18,20,21,22,23,24,25, 26, 28,30,32,36,37,38,39 (24)

1,3,4,5,7,8,1012,13,15,18,21,22,23,24,25,28,29,30,31,32,34,36,37,38,39 (26)

3,4,5,7,8,9,1012,14,16,17,18, 20,21,22,24,25,26,28,30,31,32,36, 37,38,39 (26)

n= 39 n= 39 n= 39 n= 39 n= 39 n= 39

Inter-Rater Reliability Tests (Questions=39)

Coefficient Range

Inter-rater**,@ New Delhi Thiruvananthapuram Combined RA RA RA

> 0.5 - 0.6

6,12,26,35 (4) 23,34,35 (3) 26,34,35 (3)

0.61- 0.70 11,28,34,36 (4) 12,13,15,17, 26 (5) 6,12,13,17, 23,27 (6)

0.71 – 0.80 2,13,17,19,2027,29,32,

33,37 (10) 8,9,10,18,20,27,37,39 (8)

11,15,19,20, 28,29,33,37, 39 (9)

0.81 – 0.90 1,3,10,14,15,2122,23,24,25,31,38,39 (13)

3,4,6,11,14, 19,28,29,31, 32,33,38 (12)

1,2,3,4,8,9, 10,14,18,21, 24,31,32,36, 38 (15)

0.91 – 1.0 4,5,7,8 9,16, 18,30 (8) 1,2,5,7,16, 21, 22,24,25,30, 36 (11) 5,7,16,22,25, 30 (6)

n= 39 n= 39 n= 39

Preliminary results of a segment of the data of the NDD project

Study design and Sites

• A cross-sectional community based study. • Cluster sampling technique to select twenty 2-9

years aged children per cluster across five sites (rural, urban, hilly, coastal and tribal).

• 50 clusters (1000 children) from each of three sites and 25 clusters (500 children) from two sites. (Total: 4000 children)

• Equal number of boys and girls. • NDST A (administered by non-medical assistant),

NDST B (administered by physician) and CCC were utilized for all children, separately.

12

Study sites

1. Kangra – Hilly (Himachal Pradesh)

2. Palwal- Rural plain

(Haryana)

3. Anugul – Tribal (Orissa)

4. Hyderabad- Urban (Andhra Pradesh)

5. Goa- Rural Coastal

(Goa)

* 3

* 5 *4

Study Site Partner Institutions

Strata Site Medical Institution Rural Palwal All India Institute of Medical Sciences, Delhi

Urban Hyderabad Indian Institute of Public Health, Hyderabad

Hilly Kangra Rajendra Prasad Medical College, Tanda Himachal Foundation

Tribal Dhenkanal Kalinga Institute of Medical Sciences, Bhubaneswar

Rural Coastal

North Goa SANGHAT, Goa Goa Medical College

Profile of Neurodevelopmental disabilities in 2-9years children

NDD

Northern India Western India 2-5 years (492)

6-9 years (497)

2-5 years (492)

6-9 years (248)

% % % % Vision 0.4 0.2 - 0.8 Speech and Language

2.2 1.2 7.3 6.0

Intellectual disability

3.5 4.0 1.2 1.2

ADHD NA 1.2 NA 2.5 ASD 1.2 1.2 0.8 0.4 LD NA 2.2 NA 9.7 Epilepsy 1.2 2.6 0.4 2.8 NMI 1.4 1.0 1.6 1.2 Total* 7.5 12.4 10.3 18.5

*There were some children with more than one neurodevelopmental disability

Profile of Neurodevelopmental disabilities in 2-9years children

NDD status

Northern India Western India

2-5 years (492)

6-9 years (497)

2-5 years (492)

6-9 years (248)

% % % %

Single NDD* 4.7 7.8 9.0 13.7

Children with >2 NDDs

2.8 4.6 1.3 4.8

*Isolated hearing impairment excluded

Profile of Hearing Impairment in 2-9years children

Hearing Impairment

Profile

Northern India Western India

2-5 years (492)

6-9 years (497)

2-5 years (492)

6-9 years (248)

% % % %

Isolated 13.2 15.5 - -

With other NDDs

1.0 2.0 0.4 0.4

Total 14.2 17.5 0.4 0.4

1b. Age (completed months) Years:____ Months:________ Convert in completed months

NDST TOOL

2b. Age category of the child 1. 2 – < 6 years 2. 6 - 9 years

3b. Sex 1 – Male 2- Female

4b.Relationship of respondent to child:

1. Mother 2. Father 3. Other Family Member 8. Refused to Answer 9. Others (Specify :____)

5b. Education of Respondent 1. Illiterate 2. Up to 5th class / informally educated 3. 6th to 10th class 4. More than 10th class 8. Refused to answer 9. Incomplete information/don’t know/ not sure

6. Does your child makes common age appropriate gestures to greet familiar people?

For Example: - Namaste/ Namaskara/ Vanakkam/ Salaam/ Bye-Bye/ Tata

0. No 1. Sometimes/ Less than half the time 2. Yes/ Most of the time 9. Do not know/ Not sure

7. Did /does your child ever seek your attention by pointing to things? For Example: - Fan/ birds/ animals/ aero-plane/ kite.


8. Does your child look at your face and maintain eye contact when you are talking to him /her?


9b. Did/does your child ever engage in pretend plays or games which involve role play? For Example: - Ghar-Ghar/ father-mother/ marriage of dolls/ Doctor- Patient/ Teacher-Student / Thief-Police.


10b. Like other children of his /her age, is your child able to do his /her activities of daily living by himself/ herself? For Example: - self-feeding/ self-dressing.

0. No 1. To some extent 2. Yes/ Most of the time 9. Do not know/ Not sure

11b. Does your child have difficulty in seeing clearly from a distance? (without spectacles)

For Example: - Recognizing somebody from a distance of 10-15 steps or Reading written material on blackboard


12b. Does your child have difficulty in seeing, either during day or night? (without spectacles)


13b. Does your child have difficulty in seeing small objects? For Example: - grains/ peas/ beads/ pebbles/ ants/ coins.


14b. Does your child bring objects very close to the eyes to see them? For Example: - toys/ pictures/ books.


15b. Compared with other children of his /her age, did your child have any delay in walking?

0. No 1.Delayed walking 2. Not yet walking 9. Do not know/ Not sure

IF THE RESPONSE TO

GO TO QUESTION No. 17b

QUESTION No. 15b is “2”

16b. Does your child collide with objects while walking independently or has frequent falls while walking?

0. No 1. Sometimes/ Infrequently 2. Yes/ Most of the time 9. Do not know/ Not sure

17b. Does your child have difficulty in moving his /her limbs? 0. No 1. To some extent 2. Yes/ Very much 9. Do not know/ Not sure

18b. Does your child have difficulty in getting up from squatting position or has progressive worsening/ increasing difficulty in walking, running or climbing stairs?

0. No 1. To some extent 2. Yes/ Increasing difficulty 9. Do not know/ Not sure

19b. Does your child have stiffness or floppiness and/or reduced strength in his /her arms or legs?

0. No 1. To some extent 2. Yes 9. Do not know/ Not sure

20b. From birth till date, has your child ever had fits, or became rigid, or had sudden jerks or spasms of arms, legs or whole body?

0. No 1. Yes/ Only once 2. Yes/ Twice or more 9. Do not know/ Not sure

21b. From birth till date, has your child ever lost consciousness? 0. No 1. Yes/ Only once 2. Yes/ Twice or more 9. Do not know/ Not sure

If child never attended school SKIP question No. 22b,23b,24b and 25b

Go to Question No.26b

22b. Did your child need change of school, or dropped out of school due to very poor performance?

0. No/ Other Reasons (e.g. - Transfer, Family or Economic Reasons) 1. Required change of school 2. Dropped out of school 9. Do not know/ Not sure

23b. Do the teachers complain about your child’s very poor performance in studies? 0. No 1. Sometimes/ Less than half the time 2. Yes/ Most of the time 9. Do not know/ Not sure

24b. Compared to his/ her classmates, does your child have significant difficulty in any of the subjects?

0. No 1. Only one subject 2. Yes/ Two or more subjects 9. Do not know/ Not sure

25b. Compared to his/ her classmates, does your child find it difficult to read or write or to do simple calculations?

0. No 1. To some extent/ Sometimes 2. Yes/persistent difficulty in one or more of these abilities 9. Do not know/ Not sure

26b. Can your child speak? 0. No/ does not speak 1. Makes sounds only 2. Yes/Says recognizable words 9. Do not know/ Not sure

27b. After attaining initial speech has your child now stopped speaking or has he/she stopped learning new words and sentences?

0. No 1. Somewhat reduced 2. Yes/Stopped Speaking /Lost speech 9. Do not know/ Not sure

IF THE RESPONSE TO

QUESTION No. 26b is “0” AND/OR QUESTION No. 27b is “2”

GO TO QUESTION No. 32b

28b. Is your child's speech in any way different from other children of his/ her age? For Example: - stammering/ lisping/ unclear speech.


29b. Can your child speaks words or sentences which can also be understood by non-family members?


30b. Does your child often repeat the same word or phrase over and over again in the same manner? For Example: - On being asked his/her name, your child repeats the

phrase ‘tell me your name’ instead of actually telling his/her name. 0. No 1. Sometimes/ Less than half the time 2. Yes/ Most of the time 9. Do not know/ Not sure

31b. Can your child name familiar objects (if less than 3 years old) or is able to describe an object /event or an action (if more than 3 years old)?

For Example: - dog/ bird/ water/ cup/ spoon. (for children less than 3years) or Narrate a story / poem.(for children more than 3years)


32b. Does your child have difficulty in hearing? ( without hearing aid ) 0. No 1. Sometimes/ Less than half the time 2. Yes/ Most of the time 9. Do not know/ Not sure

33b. Does your child pay attention when you address him/her by name? 0. No 1. Sometimes/ Less than half the time 2. Yes/ Most of the time 9. Do not know/ Not sure

34b. Does your child give attention to common sounds? For Example: - sound of clapping/ radio/ telephone bell/ falling utensils/

motor vehicle horn /cycle bell. 0. No 1. Sometimes/ Less than half the time 2. Yes/ Most of the time 9. Do not know/ Not sure

35b. Do you always need to speak loudly to get the attention of your child? 0. No 1. Sometimes/ Less than half the time 2. Yes/ Most of the time 9. Do not know/ Not sure

36b. Does your child seem to have difficulty in comprehending what you are saying?


37b. Does your child insist on sameness and actively resist any change in his/ her routines?

For Example: - Insisting on the same dress/ asking for the same place to sit while eating / insisting on no change in the arrangement of the toys or household items.


38b. Does your child appears to be lost in his/her own world, no matter what he/she is doing?


40b. Compared with other children of his /her age, does the mental/cognitive development of your child appear to be slow?

0. No 1. To some extent 2. Yes/ Very much 9. Do not know/ Not sure

41b. Compared with other children of his /her age, does your child have difficulty in learning new things?


42b. As compared to other children of his/ her age is your child excessively active and he/she appears to be “on the go”?


43b. As compared to children of his/ her age, does your child appear to act, speak or behave without thinking? For Example: - without awaiting his turn interrupts others in the middle of

conversation, and/ or answers questions before they have been completed, and/ or is unable to wait for his /her turn in play.


44b. As compared to children of his/ her age, does your child have difficulty in sustaining attention on activities at school, home or play?


Documents

Neuro-developmental Disorders in India – A … New Delhi, India 5. Child Development Centre, Medical College, Thiruvananthapuram, Kerala, India 6. Center for Autism and Developmental