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M. Shevell, S. Ashwal, D. Donley, J. Flint, M. Gingold, D. Hirtz, A. Majnemer, M. Noetzel, and R.D. Sheth
Practice parameter: Evaluation of the child with global developmental delay: Report of the Quality Standards Subcommittee of the American Academy of Neurology and The Practice Committee of the Child Neurology Society
Neurology 2003; 60: 367-380
[Abstract][Full text][PDF]
Practice Parameters are guidelines that through systematic review of
the literature address the goal of achieving best practice. In the
evaluation of the child with global developmental delay (GDD),
developmental performance is targeted in follow-up programs addressing
children at increased biological or social risk. Developmental concerns
prompt early intervention programs and referral for further evaluation.
[1, 2] The definition in the parameter [3] distinguishes the evaluation
approach taken for this clinical problem from that which would be taken
for a child with a delay restricted to a single domain (i.e. motor delay,
specific language impairment). Cognitive delay invariably includes
language and activity of daily living skills, and thus is included within
our definition. The distinction between GDD and autistic spectrum
disorders should not be troublesome as the latter requires observation of
specific abnormalities in language and social skills beyond mere
quantitative delay.
We appreciate that Crawford et al. consider the GDD practice
parameter a "laudable exercise" the product of "considerable efforts" to
yield a framework "for a proper diagnostic assessment". With regards to
their specific points, the value of a diagnosis is indeed highly variable
depending on the results obtained and its implications for child and
family. However it cannot be known a priori before undertaking a search
for causality. Perhaps, potential value can be judged by the overwhelming
willingness of families to undergo the studies requested. Careful reading
of the parameter reveals that the practitioner must consider and balance
potential risks of various studies against their potential yield.
Similarly, we acknowledge in the document that local limitations in access
may modify the actual selection of tests. Additionally we emphasize the
importance of the history and physical examination in the evaluation of
the child with GDD. Clearly, one size or a single standard as suggested by
Crawford et al. would not be suitable for all children. By emphasizing the
importance of the history and physical examination throughout the
document, we hope to capture the multidimensional nature of a diagnostic
evaluation while at the same time providing a rational basis for selected
testing.
Practice parameters involve multiple reviewers with many
perspectives. All comments were carefully considered. Dr. Whelan was the
sole reviewer during this lengthy process to raise concerns regarding our
working definition. The editorial by Franklin and Zahn [4] cited by Dr.
Whelan does not endorse her request for publication of a single
'dissenting opinion'. Dr. Whelan's comments regarding the process of how
this practice parameter was developed and approved are inaccurate. The
first draft of this document was prepared on August 12, 1999 and underwent
multiple revisions before the Quality Standards Subcommittee (QSS) of the
American Academy of Neurology (AAN) (August 11, 2001) first reviewed it.
It was revised and then reviewed by members of the Child Neurology Society
(CNS) Practice Committee and the AAN Reviewers Network. It was also
reviewed by selected members of other organizations including the American
Association of Mental Retardation, three sections from the American
Academy of Pediatrics including the Section on Children with Disabilities,
Section on Neurology and Section on Developmental and Behavioral
Pediatrics as well as the Committee on Quality Improvement. An additional
section with consensus-based recommendations for selective screening and
an algorithm were also added. The document was again reviewed and
approved by QSS on April 16, 2002. It then underwent further peer review
by four individuals from Neurology and again by members of the CNS
Practice Committee. This committee (June 30, 2002) voted to approve the
document by email. Of 21 members who received the document, 14 responded--
11 approved the document, two made comments, and one (Dr. Whelan)
disapproved. The final draft was accepted by Neurology for publication on
July 16, 2002 approved by QSS on August 1, 2002 and by the AAN Practice
Committee on August 3, 2002. The Executive Boards of both organizations
(CNS, August 15, 2002; AAN, October 19, 2002) then gave final approval.
Overall nearly 100 individuals from multiple disciplines reviewed drafts
of the document during this three-year period. All comments were
addressed by a specific QSS developed process that explicitly documented
the reviewer's concerns and how the authors addressed each issue. We feel
that this process as it has done with previously published evidenced-based
practice parameters sponsored by the AAN, results in documents of value to
physicians and their patients.
References
1. Committee to Advise the Public Health Service on Clinical Practice
Guidelines, Institute of Medicine. Field MJ, Lohr KN, eds. Clinical
practice guidelines: directions of a new program. Washington, DC: National
Academy Press, 1990.
2. American Academy of Pediatrics Committee on Children with
Disabilities. Developmental surveillance and screening in infants and
young children. Pediatrics 2001;108:192-196.
3. Shevell M, Ashwal S, Donley D, et al. Practice parameter:
evaluation of the child with global developmental delay: report of the
Quality Standards Subcommittee of the American Academy of Neurology and
The Practice Committee of the Child Neurology Society. Neurology.
2003;60:367-80.
4. Franklin GM, Zahn CA. AAN clinical practice guidelines: Above the
fray. Neurology 2002;59:975-976.
.
Practice parameter: Evaluation of the child with global developmental delay: Report of the Quality
19 June 2003
Thomas O Crawford Johns Hopkins University School of Medicine Baltimore MD, Anne Comi, John M Freeman, Eric H Kossoff, Harvey Singer, Eileen P G Vining and Kaleb Yohay
The evaluation of a child with developmental delay is complex. There
are, and should be, many different competing concerns in planning this
evaluation. We find the recently published practice parameters for
developmental delay a laudable exercise in evidence-based medicine, but
find the recommendations insufficiently deferential to these concerns. [1]
There are many complexities requiring consideration:
1) The value of diagnosis is highly variable. Some diagnoses will
initiate a successful therapy or prevent the initiation of inappropriate
therapy, some will permit informed genetic counseling, and some will
provide the solace of explanation to distressed family members. The value
of a potential diagnosis must be balanced against the burdens of obtaining
that diagnosis.
2) The certainty of specific diagnoses varies, and come findings
(e.g. sulcal widening on MRI or diffuse slowing on EEG) have descriptive,
but little etiologic, significance.
3) The costs associated with various tests, both in financial terms
and the potential for untoward complications of studies under sedation or
general anesthesia, must be part of the equation.
4) The population to be evaluated is poorly defined. Those with
deficits in the development of motor ability, speech and language,
cognitive, personal and social skills, or activities of daily living,
either in isolation or in various combinations with one another, will have
very different diagnostic yields on individual tests.
5) Local variation in the quality, cost, and logistic difficulties
encountered in obtaining various tests are not accounted for, nor are
variations in the level of expertise required to initiate a work up. The
history, physical examination and opinion of subspecialists in neurology,
neurodevelopmental disabilities, and genetics, as opposed to those of
primary care providers, will likely introduce differences in the pretest
probability of a positive result and alter the predictive value of
individual diagnostic tests.
Practice parameters, as opposed to practice guidelines, have the
potential for generating legal liability. They set a single standard
against which the performance of pediatricians and pediatric
subspecialists will be measured. We believe that the diagnostic evaluation
of the child manifesting signs of abnormal development is sufficiently
multidimensional that the available data, collected on widely varying
populations by investigators with widely varying resources and expertise,
do not permit establishment of such a standard. Nonetheless, we welcome
and value the committee's considerable efforts as a first approximation
for a proper diagnostic assessment.
Reference:
1) Shevell M, Ashwal, Donley D, et al. Practice Parameter: Evaluation
of the child with global developmental delay. Report of the Quality
Standards Subcommittee of the American Academy of Neurology and The
Practice Committee of the Child Neurology Society. Neurology 2003;60:367-
380.
Practice parameter: Evaluation of the child with global developmental delay: Report of the Quality
The recently published Practice Parameter concerning the evaluation
of the child with global developmental delay is unfortunately flawed by
the authors' decision to reinterpret this perfectly clear term, which has
always been understood to encompass cognitive delay, in such a fashion
that a child with delays in only two of five domains would be thus
classified [1]. Thus a child with cerebral palsy and consequent impairment
in motor and ADL skills, but without cognitive, social, or language
impairment, would meet the authors' definition. This stands in
contradiction to the literature which they cite (authors' references 3-7)
in support of their definition. It further contradicts the authors'
statement elsewhere that global delay is to be distinguished from autistic
spectrum disorder: on the basis of their definition, such a distinction
would not be possible. It is also troubling to see an unmodified
recommendation for routine MRI studies in the abstract: this was
appropriately modified in the text. As presented, this parameter would
appear to have been approved by the Practice Committee of the Child
Neurology Society as well as the AAN QSS. As a member of the CNS Practice
Committee, I would like to raise some procedural concerns. When polled at
the last of the two Practice Committee meetings where this parameter was
(briefly) presented, only one member expressed approval of the definition.
However, abstaining votes from absent members were counted as approving
(abstention from commentary has usually meant failure to read, an
acknowledged problem in this committee) and request for simultaneous
publication of a dissenting opinion was denied by the Co- Chair of the
QSS, who has implicitly endorsed such a practice elsewhere [2,3]. Space
does not permit further commentary, but both this parameter, and the
process, which led to its apparent endorsement, is in need of revision.
References:
1. Shevell M, Ashwal S, Donley, D et al. Practice parameter:
Evaluation of the child with global developmental delay. Neurology
2003;60:367-380.
2. Franklin GM, Zahn CA. AAN clinical practice guidelines: Above the
fray. Neurology 2002;59:975-976.
3. Hart RG, Bailey RD. As assessment of guidelines for prevention of
ischemic stroke. Neurology 2002;59:977-982.