International Perspective on Screening & Detection of Disability in Children
Amar-Singh HSS MBBS (Mal), MRCP (UK), FRCP (Glasg), MSc Community Paeds (Lond)
Consultant Community Paediatrician & Head, Paediatric Department, Ipoh Hospital

Introduction
Developmental, behavioural and psychosocial screening to identify global delay, cerebral palsy, mental handicap, hearing impairment, vision impairment, Autism, ADHD, mental health problems, and other problems have become more important in recent years. It is important to detect these early as data suggest that early detection and intervention offers better long term outcomes. It also allows fro better family well being. Unlike screening for “organic” diseases, with a specify blood test, developmental screening is challenging. Data suggests that more than 10% of all children have developmental problems and that the rate detected increases with age.

Limits to this review:

1. This brief review utilises data from many articles, reviews and web sites (mainly American, Australian & British sources). Key sources are listed in the references.
2. The focus has been largely confined to the pre-school area (0-7 years) and on developmental delay & disability, not on disease screening & detection.
3. It is not a systemic review but hopes to summarise what is currently being practises in a number of industrialised countries as a means to suggest what can be done locally.
4. This is not a comprehensive document and is written with major points to illustrate the situation

Some Definitions
Developmental surveillance

“A flexible, continuous process whereby knowledgeable professionals perform skilled observations of children during the provision of health care. The components of developmental surveillance include eliciting and attending to parental concerns, obtaining a relevant developmental history, making accurate and informative observations of children, and sharing opinions and concerns with other relevant professionals.” (Dworkin 1999) ¹. Developmental “surveillance, the process of recognizing children who may be at risk of developmental delays” ². Health care professional often use age-appropriate developmental checklists to record milestones during child care visits as part of developmental surveillance.

Developmental screening
Screening is a “brief assessment procedure designed to identify children who should receive more intensive diagnosis or assessment.”(Meisels et al 1989)¹. Developmental screening is aimed at identifying children who may need more comprehensive evaluation. It communicates the pediatrician’s interest in the child’s development, not just his or her physical health. (Kaminer et al 1982)¹. Developmental “screening, the use of standardized tools to identify and refine that recognized risk. It targets the area of concern whenever a problem is identified during developmental surveillance”.² The purpose for screening is to identify any developmental problems early and provide intervention to minimise disability. It must be recognised that a positive screening result does not imply that a child has a disability but that a detailed assessment (an evaluation) is required by a trained individual.

Evaluation
“A complex process aimed at identifying specific developmental disorders that are affecting a child”,².

Developmental delay
“the condition in which a child is not developing and/or achieving skills according to the expected time frame”. The terms “delayed development,” “disordered development,” and “developmental abnormality” are used synonymously.²

Developmental disorder/disability
“a childhood mental or physical impairment or combination of mental and physical impairments that result in substantial functional limitations in major life activities”.²

Size of Problem
The table shows the frequency of various childhood disabilities with a special focus on developmental disabilities presenting in the pre-school period. The rates varies according to the data source, definition used, community surveyed. Of these disabilities, the rate of Pervasive Developmental Disorders (Autism) is growing.
 

Table: Frequency of various childhood disabilities detected in the pre-school age groups3,4,5,6,7
Type of Disability		Rate
Intellectual/Learning disability	Intellectual Handicap (Mental retardation – includes Mild, Moderate, Severe, Profound)	10-30 per 1000
	Attention Deficit Hyperactivity Disorder	School Going: 50-100 per 1000 US estimates 20-50 per 1000 UK estimates
	Pervasive Developmental Disorders (Autism, ASD, Asperger)	6-9 per 1000
	Learning Disability (eg. Dyslexia)	50-100 per 1000
Physical disability
	Cerebral palsy	3-4 per 1000
Sensory disability
	Hearing Impairment	1-2 per 1000
	Visual Impairment	1-2 per 1000
	Visual disorders (squint, amblyopia, refractive error)	20-50 per 1000
Overall Rates of Disability/Behavioural Problems		10-16% of all children

Value of Routine Child Health Surveillance by Health Professionals

An important question to ask is whether developmental delay & disability in childhood is missed by health professional. Parents often have concerns and, at times, these are not adequately addressed by health professionals or may be falsely reassured. Of course there are also parents who may not recognise that their child has developmental problem, and some who may not attend routine health surveillance.

One recent survey by the American Academy of Pediatrics showed that “nearly all pediatricians (96%) who provide health supervision, to children birth through 35 months of age, assess for developmental risk. Pediatricians estimate an average of 9% of their patients have been identified with a possible developmental problem. Most pediatricians (75%) use more than one method to identify children birth through 35 months of age at risk for developmental delay or problems. 7 out of 10 pediatricians always identify potential problems via clinical assessment without the use of a screening instrument or checklist.”⁸ The American Academy of Pediatrics has recently extensively revised it’s 2001 policy1 on the area and clearly stated “We recommend that developmental surveillance…. be incorporated at every well-child visit. Any concerns raised during surveillance should be promptly addressed. In addition, standardized developmental screening tests should be administered regularly at the 9-, 18-, and 30-month* visits.”²

A recent retrospective review in the UK showed that routine child health surveillance contribute to the early detection of children with pervasive developmental disorders. In 63.2% of cases concerns (mainly speech & language) had been documented by 2 years and 94% by 3 years.⁹ Routine child health surveillance remains an integral part of the child health programme in the UK & Northern Ireland: “There should be ongoing surveillance of the general health and development of the child. Health professionals should listen to parents and take on board any concerns they may have, responding as appropriate.”¹²

The National Health and Medical Research Council (NHMRC) in Australia^10,11 recently published an extensive review on the issue and suggested that “Given the complex and interrelated nature of child health and development, there is a good case for a system of prevention and early detection that encompasses and goes beyond screening and surveillance for improving child health outcomes. For many early childhood risk factors it may not be possible to have simple screening tests or well defined surveillance….” While recognising surveillance is important they suggest that “Ideally, there should be an integrated system that incorporates prevention, screening, surveillance and early detection with effective interventions to improve outcomes”

The Centers for Disease Control and Prevention (Child Development & Developmental Screening) suggest that less than 50% of children with developmental delay or problems are not being identified early (before starting school) in the US.¹³

In summary routine surveillance is important as it offers parents an opportunity to discuss concerns with a professional. It however will not pick up every child with a problem and there are some concerns with the ability of professionals to take the next step once a problem is identified.

Screening Tests Available & Do They Work
There has been no attempt in this paper to discuss the ideal criteria for a screening test or discuss the justification for screening in a particular condition (see Wilson & Junger). Developmental screening does not result in a diagnosis but identifies a child who has development problem when compared with her/his peers. Standardised screening instruments recommended for use must have validity, reliability, and accuracy (god sensitivity & specificity). A summary of some screening tools currently used are in the table below. Thsi is not an exhaustive list – two good reviews on this issue are AAP policy document see Pediatrics 2006 118: 405-420 and a write up by Rydz et al in J Child Neurol 2005;20:4-21.

Programmes in place in industrialised countries
Programmes to detect developmental concerns in children vary in industrialised countries. The current recommendation appears to be routine surveillance with routine standardised developmental and behavioural screenings at periodic intervals in a child’s life. The table below summarises the issue and compares it with the revised Ministry of Health child health programme in Malaysia

A recent comment by the Joint Working Party on Child Health Surveillance UK & UK NHS on heath check states “8 month, 2 year, and 3-4 year developmental and health reviews are no longer recommended as a routine part of the core programme for all children. It is thought that primary health care teams will take a flexible approach and offer health reviews and health promotion advice for children and families most in need, or most 'at risk'. Also, to respond to parents who have concerns about their child's development.” “…... remember, there are no screening tests for many speech, language, developmental, and congenital disorders. If a parent suspects a problem with their child, they are often right. Take their views and concerns seriously. If in doubt, refer.“^3,16,18 Hence in the UK no formal universal screening is recommended at “8 month, 2 year, and 3-4 years.

This is very different form the American Academy of Pediatrics policy which recommends standardized developmental screening tests at the 9, 18, and 30-month visits.”²

Of importance is evidence that suggest that more visits for health surveillance do not improve pick up of problems and that there are no good screening test for many speech, language, developmental problems. Often a discussion on the concerns of parents is most useful.

The Australian NHMRC evidence based review on screening tests, suggest that there are few test that are reliable for developmental problems.

What ever the screening test used it is important to continue with periodic surveillance. Children found to have problems by a screening test require formal evaluation and, if confirmed to have a problem, a referral for therapy.

Barriers to Using Screening Tests & Current Problems with Detection
“The barrier to screening for developmental delay or problems most frequently named by pediatricians is the lack of time in their current practice (82%). Nearly half of pediatricians say lack of medical office staff to perform screenings is a barrier (48%)…”⁸
Beside the duration of the tests, other reasons for limited use of screening tests include unfamiliarity, difficulty with their administration, obtaining cooperation of children in a short time, lack of validation in a local setting or language/culture, problems with parental ability to do self administered tests, problems with the child being asses by a stranger in an unfamiliar setting, and the cost of purchasing some tests.

Some Words of Caution & Suggestions
It is important, as we move into an era when screening is used routinely, that we do not label children too quickly as “abnormal” or different as this may unnecessarily damage children and their parents. In addition any developmental screening for disability must involve parents in the assessment and be conducted in an environment familiar to the child. Recent work by the “Zero to 3 Work Group”²¹ suggest a new way forward.

 
 
Suggested “New Vision” of Assessment scales include²²:

o Brazelton Neonatal Assessment Scale (T. B. Brazelton)
o Infant-Toddler Developmental Assessment (IDA) (J. Erikson)
o Functional Emotional Assessment Scale (S. Greenspan)
o Assessment, Evaluation and Programming System for Infants and Young Children (AEPS) (Bricker 1993)
o Non-structured play observations (Segal and Webber)

See http://www.zerotothree.com & http://www.dbpeds.org/

While we often think in terms of detecting illness or an area of concern, it is important to also remember that health promotion for this age group is of equal importance. In recent years professional have argued that more energy, resources and focus should be placed on promoting healthy social-emotional development in infants and toddlers, rather than detecting delay.

See initiatives by Frank Oberklaid (Promotive Strategies through Community Child Health, Melbourne, Australia), and others www.reachoutandread.org & www.surestart.gov.uk.

While we aim to support children with developmental problems lets also take initiatives that to push for prevention or a reduction in the severity of theses problems.

References
1. Committee on Children and Disabilities, American Academy of Pediatrics. Developmental surveillance and screening for infants and young children. 2001;108(1):192-6.
2. AAP- Council on Children With Disabilities, Section on Developmental Behavioral Pediatrics, Bright Futures Steering Committee, and Medical Home Initiatives for Children With Special Needs Project Advisory Committee. Identifying Infants and Young Children With Developmental Disorders in the Medical Home: An Algorithm for Developmental Surveillance and Screening. Pediatrics 2006 118: 405-420.
3. David M B Hall and David Elliman. Health for all Children. Fourth Edition 2003. Oxford University Press.
http://www.health-for-all-children.co.uk/, http://shop.healthforallchildren.co.uk/
4. Bhasin TK, Brocksen S, Avchen RN, Van Naarden Braun K. Prevalence of four developmental disabilities among children aged 8 years--Metropolitan Atlanta Developmental Disabilities Surveillance Program, 1996 and 2000. MMWR Surveill Summ. 2006 Jan 27;55(1):1-9.
5. Wing, L.; Potter, D. Notes on the prevalence of autistic spectrum disorders. Full free version available via the National Autistic Society website http://www.nas.org.uk or directly via http://w02-0211.web.dircon.net/pubs/archive/prevalence.html.
6. Rydz, Sheveil, Majnemer, Oskoui. Developmental Screening. J Child Neurol 2005;20:4-21.
7. Boyle C, Decoufle P, Yeargin-Allsoop M. Prevalence and health impact of developmental disabilities. Pediatrics. 1994; 93: 863-865
8. American Academy of Pediatrics, Division of Health Policy Research. Periodic Survey #53: "Identification of Children <36 Months at Risk for Developmental Problems and Referral to Early Identification Programs", April 2003 (NB: response rate of 73%).
9. Does routine child health surveillance contribute to the early detection of children with pervasive developmental disorders? – An epidemiological study in Kent, U.K. 2004
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=375534
10. Child Health Screening and Surveillance: A Critical Review of the Evidence. National Health and Medical Research Council (NHMRC), Australia, February 2002. http://www.nhmrc.gov.au/publications/
11. Child Health Screening and Surveillance: Supplementary Document- Context & Next Steps. National Health and Medical Research Council (NHMRC), Australia, September 2002.
12. Campbell. Health for all Children (HALL 4) - Core programme for child health in Northern Ireland. 2004.
13. Centers for Disease Control and Prevention web site on Child Development - Developmental Screening.
http://www.cdc.gov/ncbddd/child/devtool.htm
14. Amar-Singh HSS. Preschoolers - Who’s Baby? An Evaluation of the Need for Health Services (Child Health Surveillance) for Pre-School Children. Proceedings of the Eight National Paediatricians Conference, May 2005.
15. Khoo Teik-Beng. Preschool Disability Screening. Proceedings of the Eight National Paediatricians Conference, May 2005.
16. Child Health Surveillance Programme, UK (see http://www.patient.co.uk/showdoc/40002281/)
17. Child Health Surveillance Programme, Australia 2005 (see
http://www.healthinsite.gov.au/topics/Health_Checks_for_Babies)
18. Delivering the National Service Framework for Children, Young People and Maternity Services. Department of Health United Kingdom. January 2005.
19. Malaysian Child & Adolescent Health (0-18 years) Programme. Ministry of Health, Malaysia 2006
20. UK National Screening Committee - Child Health Screening Subgroup. http://www.nsc.nhs.uk/ch_screen/child_ind.htm
21. Zero to Three - http://www.zerotothree.org/
22. Patrice L. Engle. Screening for learning, language and developmental delay: toward a new vision. Presentation at National MOH Malaysian Paediatricians meting through UNICEF. August 2006.
23. Developmental and behavioral pediatrics online - http://www.dbpeds.org/
24. Individuals with Disabilities Education Act (IDEA) - https://www.ideadata.org/index.html Screening Fact Sheets