Global perspective on early diagnosis and intervention for children
with developmental delays and disabilities
ALFRED L SCHERZER1
| MEERA CHHAGAN2
| SHUAIB KAUCHALI2
| EZRA SUSSER3
1 Department of Pediatrics, Stony Brook University School of Medicine, New York, NY, USA. 2 Department of Paediatrics and Child Health, University of KwaZulu-Natal, Durban,
South Africa. 3 Mailman School of Public Health and New York State Psychiatric Institute, Columbia University, New York, NY, USA.
Correspondence to Dr Alfred L Scherzer at Stony Brook Children's Services, 15 West 2nd Street, Riverhead, New York, NY 11901, USA. E-mail: alfred.scherzer@sbumed.org
This article is commented on by Newton. To view this paper visit http://dx.doi.org/10.1111/j.1469-8749.2012.04384.x
PUBLICATION DATA
Accepted for publication 4th April 2012.
Published online.
ABBREVIATIONS
AAP American Academy of Pediatrics
AEDI Australian Early Development
Index
CDC Centers for Disease Control
CFD- WHO Care for Development-World
Health Organization
HIC High income countries
HRSA Human Resources and Service
Administration
IMCI Integrated Management of
Childhood Illness
LMIC Low-and middle-income
countries
NGOs Non-government organizations
TDRE Think developmentally
refer early
USAID US Agency for International
Development
Low- and middle-income countries are experiencing a signiﬁcant reduction in mortality of children
under 5 years of age. This reduction is bringing in its wake large numbers of surviving children
with developmental delays and disabilities. Very little attention has been paid to these children,
most of whom receive minimal or no support. Thus, there is an urgent need to recognize that
improving the quality of life of the survivors must complement mortality reduction in healthcare
practice and programs. The incorporation of early evaluation and intervention programs into routine
pediatric care is likely to have the most impact on the quality of life of these children. We
therefore call for leadership from practitioners, governments, and international organizations to
prioritize regular childhood developmental surveillance for possible delays and disabilities, and to
pursue early referral for intervention.
DEVELOPMENTAL DELAYS AND DISABILITIES IN
LOW- AND MIDDLE-INCOME COUNTRIES
In low- and middle-income countries (LMICs), a marked
decline in mortality among children under 5 years of age has
begun and is accelerating.1–4
This trend is clearly related, at
least in part, to the achievements of world campaigns to eradicate
or ameliorate the impact of HIV⁄AIDS, tuberculosis,
malaria, and malnutrition, among other conditions. The 22%
reduction in child mortality achieved thus far still falls behind
the target set by the United Nations,5
and efforts need to be
intensiﬁed to reach those goals. Nonetheless, the resulting
societal changes are already profound, and these too will accelerate
in coming years.
Within this increasing survivor group in LMICs, it is estimated
that more than 200 million children have developmental
delay or disability.6
The components of this enormous
problem have been studied from many angles. Studies of survivors
of HIV⁄AIDS7,8
and malaria,9
for example, show that
they have a high prevalence of neurodevelopmental delays,
cerebral palsy,10–12
and intellectual disability.13
In essence,
there is an emerging new population of children in LMICs
with developmental delays and disabilities whose existence
must be recognized and dealt with in all health practice and
planning.
The obvious question is what can be done to address this
quietly growing problem? First, we need to recognize that the
same social environments that have a negative effect on
survival also tend to increase disabilities among survivors.14
This calls for long-term primary preventive interventions that
increase survival and reduce disability in tandem. For example,
improved living environments and access to good quality
health and social services are priorities for both objectives.15
Second, among those who survive, we need to reduce the
negative consequences of morbidity events in infancy and early
childhood through secondary preventive interventions such as
early recognition and support. We will focus on this second
component because it requires giving speciﬁc attention to
early identiﬁcation and intervention of developmental delay
ª The Authors. Developmental Medicine & Child Neurology ª 2012 Mac Keith Press DOI: 10.1111/j.1469-8749.2012.04348.x 1
DEVELOPMENTAL MEDICINE & CHILD NEUROLOGY REVIEW
and disability, which have been shown to affect cognitive,16
motor,17
and long-term social development positively.18
The
challenge lies in identifying and operationalizing what is feasible
and appropriate in different settings.
DEVELOPMENTAL DELAYS AND DISABILITIES IN
HIGH-INCOME COUNTRIES
To broaden our perspective, it is important to recognize that
the increasing extent of childhood delays and disabilities is certainly
not unique to LMICs. Studies from the USA Centers
for Disease Control, and the Human Resources and Services
Administration, show that the prevalence of developmental
disabilities in the USA from 1997 to 2008 was 13.7%. During
this period there was an increase of 17.1%, indicating there
were some 1.8 million more children with developmental disabilities
in the USA in 2006 to 2008 than a decade earlier.19
Thus, even the availability of much greater resources,
infrastructure, and technology does not necessarily translate
into fewer children with deﬁcits in high-income countries.
Early identiﬁcation of the young child in high-income
countries who has developmental delays or deﬁcits is
recognized as an essential part of good healthcare for children
in regular pediatric practice.20
It is strongly endorsed by the
American Academy of Pediatrics,21
and has been consistently
shown to effectively identify childhood abnormalities which
otherwise are likely to have been missed.22–25
Yet in the USA, for example, there is far from universal
acceptance or practice of early identiﬁcation and intervention,
despite persistent education and promotion efforts over many
years. Data are scarce about the current USA practice of regular
child health surveillance in pediatric practice.26
However,
studies suggest that children often do not receive a periodic
developmental assessment,27,28
fewer than half of pediatric
practitioners use formal screening tools,29
and only one-ﬁfth
of children received parent-centered developmental screening
in a 12-month period.30
Even in a trial of the American Academy
of Pediatrics’ early screening algorithm, among a group
of well-trained pediatric practices in the USA that volunteered
their time, only 61% of the children who failed the screening
procedure were actually referred for further evaluation and
possible early intervention.31
Nonetheless, much can be learned from the early efforts of
high-income countries such as the UK, where the concepts of
both regular developmental surveillance and early screening
were initially focused through the 1976 Court,32
and subsequent
Butler, and Hall and Ellman reports.33,34
Though over
the years there have been various and often conﬂicting recommendations
about their implementation,35
these reports stimulated
much clinical research in a variety of programs in which
surveillance and screening formed the basis for child development
activities in several countries, such as in the Child Health
Promotion Programme in the UK.36
The Australian Early
Development Index is another example of active surveillance in
which teacher identiﬁcation of children with developmental
problems forms the basis of periodic reporting and can inform
future health program planning.37
In summary, the health
approach, concepts, infrastructure, and resources marshaled in
some high-income countries have already provided models that
can be adapted and partially replicated in resource-poor areas.
CURRENT PRACTICE OF EARLY DETECTION AND
INTERVENTION
Most teaching programs in LMICs still concentrate on
‘growth’ aspects of pediatrics alone. Health staff are trained
primarily in the treatment of acute childhood illnesses. Often
they have limited sensitization, interest, or training in child
development or recognition of early neurodevelopmental
delays.38
This is understandable given the emphasis on
improving survival, but it is no longer acceptable. Studies of
recent medical school graduates in Malaysia, for example,
indicate a paucity of clinical exposure and training in identifying
and caring for children with developmental disabilities.39
In this setting parents often have strong cultural values and
myths about child development and healthcare. They might
be unaware of the signiﬁcance of serious developmental delays
or the presence of signiﬁcant neurodevelopmental disor-
ders.40–42
Usually medical attention is sought because of acute
illness rather than developmental or behavioral concerns.
Combined with the practitioners’ frequent lack of developmental
awareness, delays and even speciﬁc developmental deﬁcits
might be completely overlooked as the child is treated for
an unrelated acute illness.
It is likely that there are multiple factors that inﬂuence
the acceptance and practice of early detection and intervention,
although data are limited. These include physician
attitudes, awareness, or interest;43
insufﬁcient training;44
doubt about the value of early detection or non-acceptance
of early treatment;45
uncertainty about how or where to
refer;46
time limitations of the clinic visit and inadequate
reimbursement;47
and cost factors.48
In some cases practitioners
might be legitimately concerned about unnecessarily
alerting a family and would prefer to wait until the problem
is too obvious to ignore.49
The appropriate education
and training, issues affecting professional interest, motivation,
and health-provider acceptance, need extensive study
in the context of local geographic and cultural conditions.
Intertwined in the spectrum of responses of healthcare
practitioners are a variety of approaches and instruments
used in the practice of early diagnosis. In high-income
countries there is an ever-growing trend to rely heavily on
the use of screening instruments by practitioners. Among
the many developmental⁄behavioral screening tools in use
in the USA, for example, are the Ages and Stages Ques-
tionnaire,50
Parents’ Evaluation of Developmental Status,51
and the Denver Development Screening Test II.52
More
speciﬁc screening and⁄or diagnostic evaluation tools include
the Connors ADHD Rating Scales,53
Modiﬁed Checklist
for Autism in Toddlers,54
Autism Diagnostic Observation
What this paper adds
• International health-program survivors have significant developmental delays
and disabilities.
• Early diagnosis and intervention programs are essential to ameliorate
developmental delays and disabilities, and are feasible in developing
countries.organizations.
2 Developmental Medicine & Child Neurology 2012
Schedule,55
and the Autism Spectrum Screening Question-
naire.56
Screening tools for use in LMICs are also now emerging,
although there are limited reliable data about availability of
effective services.57
Examples include using caregiver developmental
reports in Kenya,58
the Malawi Developmental Assessment
Tool,59
the Rapid Neurodevelopment Assessment
Instrument in Bangladesh,60
and the Brigance developmental
screening tool for aboriginal children in Australia.61
Screening
instruments, however, are often difﬁcult and expensive to
administer in the course of routine care,62
and might have
inadequate sensitivity,63
cultural relevance,64
and variable predictive
validity.65
In practice, screening is often sporadic, infrequent,
or non-existent. Moreover, screening tools cannot
substitute for good practice in routine primary care, which
ideally includes an appropriate history, clinical examination,
and relevant laboratory studies as available.66
Although the complex issues affecting formal screening
need deﬁnitive research, regular surveillance of development
during clinical contacts offers an easily administered means
of early detection with minimum cost, yet enables referral
for further evaluation and intervention where appropriate.
This approach could be easily incorporated into routine
training at all levels and promote an awareness that medical
care involves going beyond reducing morbidity and mortality,
to planning for the habilitation, education, and social
needs of survivors.
FEASIBILITY OF EARLY DETECTION AND
INTERVENTION IN LIMC
In LMICs the usefulness of early detection and intervention
has been articulated over a long period.67
Yet even now, when
there are rapidly increasing numbers of child survivors with
delays and disabilities, early identiﬁcation is often not well
appreciated, and its implementation has become a central
challenge. We propose that there are feasible strategies available
for rigorous testing, which, if proven effective, could be
made widely available to reach as many children as possible.
One such strategy is to use a surveillance approach in primary
pediatric healthcare for routine observation of early childhood
milestones. Longitudinal progress in milestones has been
shown to be a signiﬁcant predictor of developmental out-
come.68
Assessing achievement of milestones can enable rapid
distinction between simple delay in the pace of development
and a non-progressive disability, such as intellectual deﬁcit,
cerebral palsy, or a progressive neurological disorder. Indication
of deﬁnite milestone delays could then lead to formal
screening, including taking a relevant history, performing clinical
evaluation, and using laboratory studies, depending on
available local resources. Unfortunately, there are currently no
data available from community-based rehabilitation or other
programs on the regular use of culturally relevant childhood
developmental milestones in routine surveillance in LMICs.57
Such a procedure could be readily incorporated into training
programs with minimum additional time requirements or
expense for administration. By analogy, growth charts (i.e.
height and weight) have been in routine use over a long period
with a similar purpose, and few would question their usefulness.
Thus, we can be optimistic that developmental milestones
can also be effectively monitored in routine care.
A surveillance instrument of this type was used in a trial in
Cambodia to alert, remind, and sensitize health workers of relevant
developmental milestones using a simple check-off sheet
grouped by age intervals.69
Possible future reﬁnement of the
Cambodia milestones selected would be based on recent doctoral
work.70
Emphasis here is on developmental surveillance,
which is routine, quick surveillance of ‘well’ children at speciﬁc
ages at the primary healthcare level, versus formal screening
by medical professionals. Levels accomplished would be
noted as either observed by the health worker or obtained
from caregiver interview, and could serve as the basis for possible
further evaluation. An equivalent developmental milestone
surveillance tool is now being incorporated into the South
African Road To Health Booklet, which is distributed to the
mothers of all newborn infants and checked at well-baby vis-
its.71
Further local adaptation will follow, bearing in mind the
cultural context and different levels of health services, ranging
from community to tertiary.
Information on medical and healthcare models for LMICs
is limited in all available databases, and programs vary
greatly.57
Yet data indicate that early identiﬁcation can be a
feasible and effective component to support children and their
families, even where specialized treatment services or equipment
are not readily available. For example, early detection
creates opportunities for parent education and support, which
has been shown to have a great inﬂuence on parent–child
interaction.72
It can enhance home management through parent
training in more appropriate daily child care, such as carrying,
holding, feeding, dressing, and bathing.73
Where early
intervention services are available, as in community-based
rehabilitation74
and other documented programs,75,76
it can
result in speciﬁc motor, speech, or other therapies, and the use
of specialized feeding and motor equipment. Such interventions
can improve quality of life and enhance future cognitive,
motor, and social development for a child with neurodevelopmental
delay or disability.77,78
Data show that the procedures
of early intervention stimulation, specialized therapy care, and
the use of appropriate equipment are signiﬁcant factors in
helping achieve maximum beneﬁt to the growing child.79,80
They can provide signiﬁcant support to families,81
and can be
effectively incorporated into childhood developmental pro-
grams.82
Further research is needed to validate effectiveness of
these procedures in a global context.
Clearly, it would not be appropriate to propose the same
procedures that are used in high-income countries. We suggest,
however, that this challenge can be met. We can develop
ways to introduce early detection into routine pediatric care in
LMICs, as well as to introduce effective interventions that can
follow.
BARRIERS IN GOVERNMENTS AND OTHER AGENCIES
There is a wide gap between international health-program
awareness and planning for early diagnosis and intervention in
Review 3
light of the increasing numbers of surviving children with
delays and developmental deﬁcits. The international health
programs of the US Agency for International Development
(USAID) have extensive activities throughout the developing
world. Like other individual government efforts, the focus is
primarily on improving nutrition and reducing infectious disease.
There is sparse mention of development concerns about
young surviving children or, speciﬁcally, early screening or
intervention.83
The World Health Organization (WHO) and the United
Nations Children’s Fund (UNICEF) jointly participate in the
Integrated Management of Childhood Illness (IMCI)
program, working to improve health-worker knowledge and
performance through training. Since 2001 there has been an
emphasis on development of child survivors. However, the
focus in its chart booklet for clinical case management has
been conﬁned to treatment of acute illness and after-care only
of sick children.84,85
The WHO’s Care for Development
counseling materials, which form part of the IMCI strategy,
use counseling to promote healthy development of children.
This is intended to offer a feasible community-level strategy in
low-resource settings. The Care for Development approach is
a way to sensitize communities and individual caregivers to
child development issues. The Pan American Health Organization
introduced the ‘Monitoring Child Development in the
IMCI Context’ manual in 2005 to achieve awareness of development
and to enhance developmental surveillance at primary
health level, but widespread acceptance of the early identiﬁcation
approach remains lacking. Indeed, even within the United
Nations itself, where 193 members adopted the Millennium
Development Goals in 2000 to reduce the under-5 mortality
between 1990 and 2015 by two-thirds, there is no mention of
planning for early involvement with childhood survivors in its
Goal 4 (Child Health).5
Similarly, the large non-governmental organizations such as
the Bill and Melinda Gates Foundation, the William J. Clinton
Foundation, and the Carter Center,86–88
focus on disease
eradication along with broad development activities, but do
not target identifying early and providing developmental care
for the child survivors with delays or deﬁcits. We are led to
conclude that among the world’s health leadership within governments,
ofﬁcial international agencies, and non-governmental
organizations, the focus of activity concerns mortality
reduction without signiﬁcant attention to or planning for early
identiﬁcation of surviving children, or providing for the proven
interventions most likely to help achieve their optimum
capability.
THE PATH FORWARD
A global strategy is needed to narrow the gap between early
identiﬁcation and the increasing population of children with
delays and disabilities. This can best be achieved through
acceptance of ﬁve basic principles.
First, it is essential that there is a broad understanding
and awareness of trans-cultural child development. This
sensitization then should lead to the routine practice of
thinking developmentally wherever healthcare is given, even
while attention is focused on speciﬁc disease entities or
acute medical problems. Where there is any question of
possible developmental delay or disability, early referral
should be considered for further evaluation and intervention
consistent with avoiding excessive false-positive results.
It is recognized, however, that even children showing falsepositive
results might constitute an at-risk group justifying
additional evaluation.89
To think developmentally and refer
early (TDRE) should be an integral part of all clinical contact
and planning, and routinely included in all health staff
training. This concept should be subject to rigorous
research in cultural context.
Second, health care must be recognized as a concept involving
ongoing child development and not be restricted to reduction
in morbidity or mortality. This should lead to broad
planning for the social and educational needs of survivors.
Third, in LMICs there is need for simple culturally relevant
surveillance systems to alert and remind practitioners
about development in all health contacts, and enable early
referrals.
Fourth, in high-income countries, research is still needed to
improve education and training programs as well as to identify
factors that will affect motivation and acceptance of early identiﬁcation
by all practitioners.
Fifth, broad community planning and involvement is essential
to enable understanding and acceptance of health and
development goals. In LMICs, in particular, an approach is
needed that will ensure local capacity building for the future
to enable the broadest juxtaposition of health, education, and
social objectives. Speciﬁc programs of early childhood education
need to emerge, both for children with delays and disabilities
and those with normal development.
Some of these principles can be incorporated immediately.
Others will require new approaches to research for future
implementation. Many will necessitate changes in understanding,
attitudes, concepts, and even ﬁnancial considerations.
There is now ample evidence that, ultimately, we must be
guided along the lines of the above principles, without which
the very children whose lives we save might achieve little of
the promise of the future.
CONCLUSION
It is becoming increasingly essential to inﬂuence health agencies
and practitioners to go beyond simply reducing morbidity
and mortality, and instead to emphasize quality of life as a
major health goal now. Early evaluation and intervention
includes not only management and treatment for the individual
child, but also provision of appropriate family and community-based
support mechanisms. It is but a ﬁrst step on the
long road to ensuring the needed services that will enable
every child to reach their best potential and to assume a
productive role in society.
4 Developmental Medicine & Child Neurology 2012
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