I remember, quite clearly, the CCHIT committee conference call where I learned the truth. "I'm sure there are sources for alternative growth charts. I've seen them with my own eyes," I said as Dr. Marcus tried to convince me otherwise I couldn't believe that the well-known, non-standard growth charts - for Downs children, preemies, etc. - weren't readily available for use in an EHR.
But they weren't. And aren't.
Yes, we can all google around for alternative pediatric growth charts and find pictures of the graphs on-line, what you won't find is an official, peer-reviewed, AAP-approved data set that can be used to construct alternative growth charts within an EHR. Those special growth charts some EHR vendors have? Dangerous, imo. Where does the data come from?! How can you plot the digital data on it?
COCIT has recognized the problem and are working hard to solve the problem. Check the message below and spread the word!
From: COCIT [mailto:COCIT@LISTSERV.AAP.ORG] On Behalf Of Rosenbloom, Trent
Sent: June 02, 2010 3:04 PM
Subject: Updating growth charts for Down syndrome
Given recent advances in medical and nutritional care, the current standard Down syndrome growth charts may no longer represent growth of children with Down syndrome today. In addition, existing paper-based Down syndrome growth charts do not easily lend themselves to integration into electronic health record systems in an interoperable way. To address these gaps, several colleagues and I are looking to develop a set of updated growth charts for kiddos who have Down Syndrome in a way that can be easily implemented into electronic health record systems, and which would be available along the model of the CDC growth charts for normally developing children. These charts would also be an update on existing Down Syndrome growth charts to reflect the benefits of advances in medical and nutritional care that have occurred since the last such charts were created. We would like the charts to reflect a large multicenter population of children to maximize their power and generalizability.
We plan for the charts to be freely available to all pediatricians and EHR systems, with the single goal of making it easier for healthcare providers and families to track the growth of children with Down Syndrome.
We are looking for healthcare systems or centers that care for a large number of children with Down syndrome to collaborate with us. Collaboration will involve sharing de-identified data that includes information about age, gender, growth and the presence of certain diagnoses, such as prematurity and congenital heart disease. If you operate at such a center and are interested, please let us know.
Please note additional information below. I am happy to answer any questions you may have.
S. Trent Rosenbloom, MD MPH
Assistant Professor, Department of Biomedical Informatics
Assistant Professor, School of Nursing
Internal Medicine and Pediatrics
Office: (615) 936-1541; fax (615) 936-5900
Eskind Biomedical Library
2209 Garland Avenue, Nashville37205
Background and Rationale
Pediatric growth charts have been developed by the United States Centers for Disease Control and Prevention (CDC) to help physicians assess patients’ nutritional and general health status. Patterns of growth can then be easily reviewed to determine whether they are following the expected trajectory and to identify cases of inadequate or excessive growth.
Electronic Health Record (EHR) systems are increasingly being adopted by all types of healthcare providers, including those caring for children. Management and presentation of normative and patient growth data have particular importance in pediatrics, and are a minimum requirement for comprehensive EHR systems used in that setting. This was echoed by the AmericanAcademy of Pediatrics Task Force on Medical Informatics in their “Special Requirements for Electronic Medical Record Systems in Pediatrics.” Necessary functionality includes the ability to record height, weight and head circumferences; to plot these data against normative curves such as those published by the CDC.
Most Down syndrome growth charts are based on work done by Cronk, published in 1988. The Cronk growth charts represent a cohort of children ascertained before modern advances in the treatments for prematurity, congenital cardiac disease and nutritional deficiencies. In addition, the data underlying the Cronk charts are not available for direct implementation into EHR systems. Other studies by Myrelid in Sweden and by Styles in Ireland, both published in 2002, report more modern estimates of growth. However, both are restricted to relatively small geographic settings, and neither provide data that can support EHR system growth charts.
The primary goal of the current work is to develop modern growth curves for children with Down Syndrome that account for advances in care for prematurity, congenital cardiac disease, and nutritional challenges in infancy, then to make these charts freely available for use in paper-based medical records and for easy integration into EHR systems.
All patient encounters involving children ages 0-18 years old with Down syndrome occurring during the study period will be included. The study period has not yet been defined at this time, but will likely include at least the previous five years. All data will be retrospective, sourced from existing medical records. For the study, the following data points will be obtained: gender, values for weight, height and head circumference, age at the time of measurement (or dates of measurement and of birth), whether the child had congenital heart disease and the estimated gestational age at birth if measurements were taken within the first 3 years of age. All data will need to have a patient identifier or code so that multiple data points from single patients can be linked, but the identifiers should not be tied to any clinical identifier (such as a medical record number).
Using statistical modeling methods such as those applied by CDC and described at http://www.cdc.gov/nchs/nhanes/growthcharts/datafiles.htm, the investigators will develop percentile curves for the 3rd, 5th, 10th, 25th, 50th, 75th, 90th, 95th, and 97th percentiles of growth (data permitting) and for the mean and standard deviations of growth. Growth curves covering ages 0-18 and for girls and boys will be developed for the entire population. In addition, curves covering ages 0-3 for children with prematurity and covering 0-18 for children with a history of congenital heart disease will also be developed. The different charts will be compared to assess the impact of prematurity and congenital heart disease on growth. Last, charts documenting the BMI of Down syndrome patients will also be developed, as weight gain frequently presents as a medical concern in both the younger and older Down syndrome population. The investigation team’s statisticians are currently finalizing the specific modeling methods to be applied.
Before initiating the project, all participating sites will need to submit a request to their local institutional review board and will possibly enter into a data sharing agreement. The data sharing agreement will basically outline that there is no intention to profit from this work, and that all data is shared freely for the development of a new free resource (i.e., the new growth charts for children with Down syndrome). The primary research team will help with these as needed. We will work with collaborators to facilitate this process.
The research team anticipates no to minimal subject risk from this research. The data used for the research is generally of a non-sensitive nature (e.g., age, diagnoses and gender) and will be de-identified. The research team anticipates no direct benefits to patients whose data is used for this study. The knowledge obtained from this research is expected to improve physicians’ ability to monitor growth and to identify patients with growth delays. Accurately identifying growth delays in children with Down syndrome may be the first step in diagnosing and treating medical and social diseases in this population.