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a Centers for Disease Control and Prevention, Atlanta, Georgia
b Louisiana Office of Public Health, New Orleans, Louisiana
| ABSTRACT |
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METHODS. A list of hospitals with labor and delivery services was obtained from the Louisiana Hospital Association. A survey sent to hospitals on October 17, 2005, asked about the number of live births during the assessment period, disruption in hospital services, the number of specimens sent to alternative laboratories, and the number of children without screening results.
RESULTS. Among 64 Louisiana hospitals with labor and delivery units, 6 remained closed at the time of the survey. Of the 58 open hospitals, 53 (91.4%) completed the questionnaire. Twenty-one (36.2%) of 58 hospitals experienced disruption of newborn screening services. Respondents from 31 (58.5%) of the 53 open hospitals acknowledged receiving the advisory from the Office of Public Health regarding resumption of newborn screening laboratory services. Hospitals stated that of 5958 specimens submitted, reports had not been received for 1207 (20.3%) newborns. The Office of Public Health laboratory reviewed the names of 2828 newborns received from hospitals and determined that no specimen was received within 14 days of collection for 631 (22.3%). Thirty percent of the specimens received from infants who were born between August 15 and September 21 were rejected as a result of having been received >14 days after collection. Ten children had confirmed positive screening results during the assessment period; all were located, and treatment was initiated.
CONCLUSIONS. Collaboration between the Office of Public Health and the Centers for Disease Control and Prevention was essential to increase awareness of changes in laboratory procedures after the hurricane and to help identify infants who might be in need of screening or rescreening.
Key Words: newborn screening genetic screening evaluation public health emergency preparedness laboratories
Abbreviations: OPH—Office of Public Health HAN—Health Alert Network UIHL—University of Iowa Hygienic Laboratory CDC—Centers for Disease Control and Prevention
On August 29, 2005, Hurricane Katrina made landfall along the Gulf Coast of Louisiana and Mississippi. The catastrophic high winds and flooding resulted in dislocation of the Louisiana Office of Public Health (OPH) staff, an almost total breakdown of communications in the southern part of the state, widespread and prolonged electrical outages, hospital closures, limited postal service, and the ensuing disruption of essential public health functions by the OPH.1 The New Orleans, Louisiana, OPH offices and laboratory closed as a result of flooding, causing an immediate interruption of newborn screening services and diagnostic follow-up.2 Before the storm made landfall, the staffs of both the OPH Laboratory and the Genetic Disease Program evacuated from the New Orleans area to other parts of Louisiana and to other states. Some staff could not return for several weeks to months. Because of the disruption and destruction caused by Hurricane Katrina, >70% of the newborn screening laboratory staff, including the manager and both supervisors, resigned in the months after the hurricane.
The OPH Laboratory notified all Louisiana hospitals on August 31 via the Health Alert Network (HAN) fax list to mail newborn screening specimens to the OPH Laboratory in Shreveport, Louisiana. The US Postal Service was requested also to forward specimens to Shreveport. In an attempt to restore screening services, on September 1, the OPH Laboratory submitted a request to the Emergency Management Assistance Compact, a congressionally ratified organization that provides interstate mutual aid, to have newborn screening tests performed by another state public health laboratory. The request was approved within 24 hours, and within another 24 hours, 2 states had responded. OPH accepted the offer of assistance from the University of Iowa Hygienic Laboratory (UIHL). Newborn specimen testing resumed on September 8, and a second advisory was sent on September 14. This advisory was sent by HAN fax and through the e-mail network of the Louisiana chapter of the American Academy of Pediatrics. It directed submitters to send specimens to the OPH Laboratory in Shreveport. The specimens were then forwarded by overnight delivery to UIHL for analyses. Concerns were raised that a large number of newborns might not have been screened or had specimens or screening results that were delayed or lost.
Endocrine, metabolic, and hematologic disorders that are identified by newborn screening can present early in life with severe and irreversible consequences, making early treatment or preventive measures imperative health information for newborns.3,4 Therefore, it was critical that the OPH quantify the scope and magnitude of newborn screening problems and locate any infants who had not received a valid newborn screening. Because newborn screening depends on integrated health services, the resumption of screening is a good marker for the reestablishment of essential public health services in the early recovery phase after a wide-ranging disaster.
With all of the hurricane-induced problems, it was impossible for OPH staff to track lost specimens or screening results. To assess the impact of Hurricane Katrina on newborn screening, the OPH and the Centers for Disease Control and Prevention (CDC) formed a team to determine the extent to which newborn screening services were interrupted for infants who were born between August 15 and September 21, 2005, and to strengthen the response by state public health officials to reinstitute newborn screening and follow-up procedures. The Science and Public Health Team at the CDC's National Center on Birth Defects and Developmental Disabilities determined that this assessment was a public health practice in response to an emergency situation in need of health controls and not research.
| METHODS |
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The survey included questions to determine whether the hospitals had received the September 14 OPH memorandum announcing the resumption of services at the relocated OPH newborn screening laboratory in Shreveport, whether any reporting difficulties had been noted, and whether the hospital held specimens until laboratory services were resumed. The assessment team assisted OPH in informing hospitals that specimens that were held in a warm or humid environment for >14 days should be discarded and those infants should be rescreened. The team also requested from the surveyed hospitals that provide labor and delivery services the names of and contact information for infants who were born in their facility from August 15 to September 21 and did not have screening results sent to the OPH Laboratory. The laboratory and hospital lists were then compared to ensure that all newborns had valid screening test results. The OPH Laboratory also provided data on the number of specimens processed, the number of specimens rejected because they were >14 days old, and the average time from specimen collection to the time results were reported.
Most hospitals in Louisiana use the state public health laboratory for screening of newborn blood specimens. Before the hurricane, Women's Hospital in Baton Rogue (the largest labor and delivery service in the state) used its own laboratory for screening newborn specimens. Four hospitals in north Louisiana routinely used Pediatrix, a private laboratory. Hurricane Katrina did not have a significant impact on newborn screening services at these hospitals.
| RESULTS |
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Number of Births and Screening Results
For the period from August 15 to September 21, 2005, a total of 6419 live births were reported from the 58 surveyed hospitals that remained open (5958 births from 53 hospitals that completed the entire survey and 461 from 5 hospitals that partially completed the survey). In these 58 hospitals, the numbers of live births in August (4310) and September (4474) 2005 were roughly equivalent to the numbers of live births in August (4197) and September (4366) 2004.
From 5958 specimens submitted from hospitals after the hurricane (Fig 1), hospital staff initially reported either that 1207 (20.3%) screening results had not been received or that the results could not be considered valid because of exceeding the time allowable for the collection period (Table 2). Another 1070 (18.0%) of the specimens were submitted by 7 hospitals that have newborn screening results sent directly to the physicians and were not able to provide information on results received. Because of a lack of adequate resources, no follow-up was done to determine whether reports on these infants were received subsequent to the study period. The assessment team requested that names with missing or invalid screening results be sent to the OPH so that their families could be contacted for rescreening. Among the survey hospitals, 28 sent the OPH lists of 2828 newborns who were born between August 15 and September 21, 2005. No specimen was received from the hospitals within 14 days of collection for 631 (22%) newborns, which is similar to the percentage of newborns for whom the hospitals reported not receiving results. Subsequent specimens were received for 197 (31%) of the infants. Thus, 15% of infants who were born at these hospitals may not have had a valid newborn screening. This percentage includes any infants who had name changes or who relocated to other states.
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Screening Practices
Before Hurricane Katrina, 5 hospitals, including the hospital with the greatest number of births in the state, routinely submitted newborn samples to laboratories other than the OPH. Immediately after the hurricane, 3 other hospitals temporarily contracted with private laboratories to mitigate the closure of the OPH Laboratory (Table 3). Respondents from 12 hospitals reported that screening results were not available to them because the results were delivered directly to the primary care physician (Table 2).
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0.1%, the percentage rejected as a result of age during the period of September 7 to 21 increased to 4%, primarily originating from the southern part of the state, which was the most heavily affected by the hurricane. As of October 1, 2005, the OPH Laboratory in Shreveport received 3649 specimens on infants who were born between August 15 and September 21. Thirty percent of the specimens were rejected because they were >14 days old. As of July 2006, valid specimens have not been received from 434 of these infants (Fig 2). Specimens continued to be received by the OPH Laboratory in Shreveport for up to 9 months after the hurricane. The closure of the main post office in New Orleans caused dramatic delays in mail service and was the primary cause for the increase in the number of specimens rejected because of age.
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| DISCUSSION |
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Through a statewide survey, we found that most hospitals where newborn screening takes place had some disruption of those services. The assessment found that a significant number of children required repeat screening because results were unavailable, assays were potentially compromised by improper storage, or shipment of specimens to the laboratory was delayed. The severe disruptions caused by Hurricane Katrina illustrate the need for a public health infrastructure that has the functional capacity to prepare for and respond to such disasters.6,7
Preparedness implies a plan that contains policies to ensure continuity of operations, especially in the immediate postdisaster period, when issues such as staff safety and displacement, interrupted telephone and mail, and disrupted medical and nutritional services predominate. The lessons from Hurricane Katrina suggest that an emergency contingency plan for newborn screening should also take into consideration supplies (eg, blood spot paper), data storage and management, and reestablishing communication channels. For ensuring that screening and confirmatory testing continue during such emergencies, prompt restoration of laboratory capacity is critical and may entail relocation of the processing center and screening of specimens to other laboratories.
In Louisiana, the Emergency Management Assistance Compact served as the mechanism to help facilitate the transfer of screening to the UIHL after Hurricane Katrina.8 Our survey found that several hospitals made temporary arrangements to use private laboratories. Some of the screening procedures used by the University of Iowa laboratory differed from those used by the OPH Laboratory, which illustrates the importance of establishing memoranda of understanding before the emergency to help facilitate continuity of services. Such memoranda should include standardized screening and reporting procedures, confirmatory testing for initial positive screening test results, and defining performance standards.9,10
Even without disruption of normal services, the feasibility of tracking newborns with abnormal screening results has been limited. This survey found that 18% (Table 2) of newborn screening results were sent directly to providers, thus bypassing the hospitals where the infants were born. In a survey of newborn screening programs, respondents from only 34 state programs reported that they contact the screening programs in other states when a family moves and leaves a forwarding address.11 Previously identified barriers to retrieving and following up on screening results include births in hospitals where the primary care physician does not have privileges, infants who are new transfers to a medical practice, births in other states, and personnel time needed to track results.12 In the same survey, 31% of responding primary care pediatricians indicated that notification of initial positive screening results was >10 days, and another 5% were not routinely notified of positive results, although national standards set the period for notification of positive results to within 7 days.9 In a related study by the American Academy of Pediatrics, researchers found that 39 states had no procedure to identify a primary care coordinator ("medical home") before the child's birth,13 an important component to facilitate reporting of screening results and ensuring that positive screening results are followed with confirmatory testing.14
A limitation to this assessment of newborn screening after Hurricane Katrina is the inability to obtain data from the 6 persistently closed hospitals in New Orleans that service an important portion of the Louisiana birth population. Therefore, the data presented in Tables 1 and 2 do not fully portray the extent of hurricane-related disruption to newborn screening in the state. Another limitation is that hospital staff self-reported birth and newborn screening data. Although we had a high response rate (91%) and made every effort to survey laboratory directors and nursing directors of labor and delivery units to obtain the most accurate information, we did not make any attempts to validate independently the information provided. However, we believe that the data are in all likelihood valid because information on the number of births and newborn screening results were usually obtained by fax or after a second telephone call by the assessment team after the respondent researched the hospital records.
The discussion and policy development on the integration and coordination of newborn screening programs involves the Regional Genetics and Newborn Screening Collaborative groups (the umbrella organizations of state newborn screening programs), the American Academy of Pediatrics, the American College of Medical Genetics, the Association of Public Health Laboratories, the Health Resources and Services Administration, the National Conference of State Legislatures, the Secretary's Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children, and the CDC. These parties, which are in the process of defining the issues and framework for contingency planning to ensure the continuity of services for newborn screening during and after emergencies and disasters, should rely heavily on the Louisiana post–Hurricane Katrina experience.10
| CONCLUSIONS |
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| ACKNOWLEDGMENTS |
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We are grateful to the public health nurses and hospital laboratory, labor and delivery, and nursery staff who worked to ensure that all children had reliable results. We thank Dr Richard Wang for critical review of the manuscript. We also acknowledge assistance with data collection provided by Neetu Bali, Krista Crider, Bennett Gardner, Suzanne Gilboa, Ridgely Fisk Green, Katie Kilker, James Kucik, Carrie Lazarus, Tiffany Riehle, Samantha Wakefield, and Mahsa Yazdy.
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Address correspondence to Richard S. Olney, MD, MPH, Centers for Disease Control and Prevention, 1600 Clifton Rd, Mail Stop E-86, Atlanta, GA 30333. E-mail: rolney{at}cdc.gov
The authors have indicated they have no financial relationships relevant to this article to disclose.
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