Pediatric Informatics: Computer Applications in Child Health (Health ...

58 L.W. Desch and P.H. Lipkin
performed using a standardized developmental questionnaire through the office
Website for use at the visit. At present, there are only a few standardized developmental
surveillance and screening instruments that are adaptable to an EMR or include
specific EMR-compatible software, such as the Ages and Stages Questionnaires 13
and the Parent’s Evaluation of Developmental Status (PEDS). 14 Other tools, such
as the Achenbach Child Behavior Checklist 15 have undergone extensive evaluation
for EMR incorporation. Nonstandardized tools, which typically consist of questions
on milestone achievement that the physician asks the parent during a health maintenance
visit or could be on an office website, are best suited for surveillance.
Regardless of the implementation (paper, Web-based, using an EMR or other software),
the reliability of a developmental test depends on evaluation of the validity,
the sensitivity and specificity of the instrument, 12 the size and appropriateness of its
normative population needs and the applicability of the test and its implementation to
the practice population. Finding information on test validity is not a problem for commonly
used questionnaires, but their availability in electronic (or EMR-compatible)
versions may be limited due to development costs and royalty issues, but this will
change as demand for EMR-compatible standardized instruments increases.
As in the Case Study (and as is recommended 12 ), detection of a developmental
problem should lead to a referral for Early Intervention (EI). All states have systems
for EI, 4,5 including computerized data collection, but not all state agencies use
collected data for more than internal administrative functioning. 16 In one example,
in the state of Illinois, prevalence tracking of diagnoses by geographic regions has
been used to allocate resources and funding. 17 At one time, Illinois had the only
system in the US in which specialty pediatricians assisted the state EI program with
determining appropriate services and service levels for the infants and toddlers who
qualified for the program. In this program, these physicians had access to summaries
of the entire state database of services to help ensure equity and standardization
of decisions regarding the types and frequencies of therapy services provided.
It is possible that EI databases and other large state agency databases (e.g., Special
Education, Medicaid) and subsets may be used to monitor programs and therapies
being given to individual patients through linkage to public health agencies and/or
private practice EMRs. 18,19 However, a major hurdle is the issue of privacy protection
(HIPAA). 20 The Illinois project, although terminated by Federal administrators
of EI because of concerns that it was “intrusive” on the parents’ and clinical teams’
decision-making for the children, remains an example of how large administrative
databases can be used to assist in individualized clinical decisions for CSHCN.
The collection of accurate prevalence statistics for CSHCN is challenging.
One approach has been to use state Medicaid data or data from large health care
systems (such as Kaiser-Permanente). Research by the Institute for Child Health
Policy using these data sets has found that this administrative data “disproportionately
identifies children with injuries and tends to miss children with chronic
well-controlled conditions.” 21 Children with temporarily incapacitating injuries
are sometimes inappropriately counted as CSHCN. Specialized questionnaires to
collect and analyze the data have been devised, evaluated and demonstrated to be
much better at correctly identifying CSHCN. 22,23