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Getting Ready for a Natural Disaster
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One Center’s Experience with Pediatric HPN Patients


Russell J. Merritt, MD, PhD, and Catherine J. Goodhue, MN

From the Division of Pediatric Gastroenterology, Hepatology and Nutrition, and the Division of Pediatric Surgery at Children’s Hospital Los Angeles


               A few years ago, one of our pediatric gastroenterology fellows, new to California but not earthquakes (she was from Pakistan), became interested in the question of whether or not our patients are prepared to deal with a potential earthquake in Southern California. As an initial step, Dr. Toor evaluated how prepared our families were, and how comfortable they were with their degree of readiness. She found that most of our families were unprepared, except for having extra batteries for infusion pumps, and unsatisfied with their degree of preparation.


               Dr. Toor then set about to develop a program to improve their readiness and to assess their comfort with their readiness after completing the preparation program. What she learned was that providing disaster preparedness information and instructing parents to complete the preparedness process led to a much-improved level of preparation and confidence in that preparation. This article reviews what we learned from the program she developed and since the project was completed.

The Vulnerability of Children in Time of Disaster

               Children are particularly vulnerable in the time of a disaster, especially when they have chronic health issues or are separated from their families. There have been studies of households of children with special needs in regards to disaster preparedness. These vulnerable households have been shown to have an even lower level of preparation than the general public.


               In addition to the risk this presents for each of these children, it also represents a substantial public health challenge, and especially for those involved with Oley, as it is estimated that there are 16,000 children receiving home parenteral nutrition (HPN) in the United States.* Previous studies in Los Angeles found that only 17 percent to 28 percent of families had any form of emergency preparedness. Our Los Angeles area population is heavily Latino in origin, and levels of preparation may be still lower in that population, and especially in Latino households with children with special needs.


Assessing Preparedness

               In order to proceed with this project in our community, Dr. Toor and her collaborators developed a questionnaire to assess the readiness of the parents of our patients to deal with a possible natural disaster emergency (figure 1). This questionnaire was adapted from previous work on assessing disaster preparedness of families of children with special needs. An opportunity presented itself to administer this questionnaire when our hospital sponsored an “Intestinal Rehabilitation Day” for education and mutual support of our HPN and intestinal rehabilitation (IR) patients. In addition, we held focus groups that day to get a more in-depth sense of the issues our families saw as interfering with disaster preparedness.


               After the conference we analyzed the data from both the questionnaire and the recorded focus groups. We found that our HPN and IR patients had a low level of disaster preparedness and felt a corresponding lack of confidence in their ability to respond in the event of a disaster.


Developing a Disaster Preparedness Plan

               The focus groups were particularly helpful in identifying perceived barriers to disaster preparedness. These included developing a list of specific extra supplies that might be needed; knowing how to obtain those extra supplies in the current insurance environment; the families’ lack of a general disaster plan; and their lack of understanding about how their physician and hospital might be able to help them prepare. From this starting point, we concluded that most families with a child on HPN were not prepared to meet their child’s special needs (or the rest of the family’s needs) in the event of a disaster. From dealing with these families, we know how committed they are to assuring their child’s welfare, and we thought this might provide sufficient motivation for them to better prepare for a natural disaster, given support from their medical support team.


               The American Red Cross (www.redcross.org/get-help/how-to-prepare-for-emergencies/make-a-plan.html and, for earthquakes, www.redcross.org/get-help/how-to-prepare-for-emergencies/types-of-emergencies/earthquake.html), the Department of Homeland Security (www.ready.gov), the American Academy of Pediatrics (www.emergencycareforyou.org/globalassets/ecy/media/pdf/eif-form.pdf), and other organizations provide online and hard-copy directions for general disaster preparedness, and specifically for earthquake preparedness. These documents are an excellent starting point for families beginning to prepare for a possible disaster.


               In general, it is recommended that families plan to have sufficient water, food, power sources, and supplies to be able to cope in place for three days (“shelter in place”) following a natural disaster. Hospitals may have insufficient beds and supplies to meet the needs of patients in a disaster situation. Being prepared for at least three days at home reduces the pressure on hospitals and allows some time for infrastructure recovery before patients may need to seek additional assistance. For families dependent upon the delivery of medical supplies, infrastructure recovery [clearing roads, for example] is especially important.


               If we look at the experience from Hurricane Katrina and from the recent Japanese tsunami, we see that lack of an alternative source of electricity was a huge determinant as to whether children with special health-care needs were brought to the hospital following the natural disaster. Other issues that were important to this population under those circumstances were accessibility of medical records, communication with their medical support team, separation of children from their caretakers, and the level of household preparedness.


               Since a disaster may occur at a time when there are few bags of PN remaining in the home, advice was provided to our families about obtaining and using 10% dextrose as a temporizing measure until a supply of PN could be re-established.


               We are fortunate at our children’s hospital in having a number of national leaders in disaster preparedness. Since we also have a great deal of experience in supporting families on HPN, we united these capabilities. Dr. Toor and our disaster planning experts developed a plan to help our HPN patients achieve disaster preparedness and confidence in their preparedness. The education took place in our HPN clinic. At the beginning of the project, thirty-one families were asked six questions about their disaster preparedness.


  A disaster survival toolkit was developed for each family. It included:

  • Four D-cell batteries for use in HPN pumps
  • Power inverter for charging laptops and phones from a car battery source
  • Waterproof flash drive with the child’s medical information and instructions for a local emergency department or provider, should the child present for care (e.g., for fever, low blood sugar, dehydration, a need for alternate fluid sources, or central line damage)
  • Paper copies of the same medical information, as some hospitals do not allow external information to be uploaded on their electronic medical record (EMR) systems
  • Supply list (figure 2)
  • Emergency Information Form (EIF, available at www.redcross.org/get-help/how-to-prepare-for-emergencies/make-a-plan.html)
  • Power and water discount forms (obtained from local utilities)
  • Handouts from FEMA and the Red Cross specific to earthquakes.

               After the first steps, Dr. Toor then followed up with the families by phone at two- and four-month intervals and re-asked the same six questions that had been posed at the initial study clinic visit. In this way, she documented any improvement over time in the disaster preparedness of our families.


               What we learned was highly encouraging. By four months after the start of the project, 90 percent of the families had an emergency plan, 93 percent had an emergency supply kit, and all of the families had an alternative power source for the PN pump (they all had this at the beginning as well!). Because of the expense, few families had invested in a generator. Their confidence in their disaster preparedness had gone from less than 10 percent to greater than 90 percent. That last result is seen in figure 3.


               What we learned from this educational project was that it is possible to apply the principles of disaster preparedness available for the general population and families of children with special needs to help families of HPN-dependent children be prepared and feel more prepared for a possible natural disaster. At the time of the conclusion of the project, both we and the families felt good about what had been accomplished.



Staying Prepared

               Since completing the initial disaster preparedness project, we have learned how difficult it is to maintain this level of preparedness. New patients come into our clinic. Medical information changes over time. Supplies become outdated. Batteries need to be replaced. Without an individual with sufficient time and commitment to continuing assessment and education for disaster preparedness who can update the relevant materials and supplies, we have not been able to maintain a high and appropriate level of disaster preparedness.


               We see many opportunities for improving this situation. Perhaps the most important is creating the expectation that we achieve a high and ongoing level of disaster preparedness. There may be ways of using the electronic medical record (EMR) to our advantage. For example, after hospitalizations or clinic visits, the medical information sheets and the thumb drive could be routinely updated. The EMR could be programmed to pull the relevant medical information. Similar things are done for other patient populations, such as those in our cancer program.


               We can also work with insurance companies to assure that supplies held in reserve for a disaster are replenished as necessary, for example on an annual basis. The recent availability of pre-prepackaged PN in special IV bags has also broadened the choice of alternative fluids that can be kept for use in an emergency.


               We also think families can and should play an important role in achieving this goal. Families working in groups or as individuals can develop a plan for updating their preparedness on at least an annual basis. They can insist that they have information available at all times that would assist them in an encounter with a new hospital or provider in the event they require care after a natural disaster (or on other occasions).


               The Oley Foundation might also be a great resource for developing information resources and guidance to families for achieving these goals. In addition, they could be instrumental in urging national standards for disaster preparedness for children with special needs, particularly those on home parenteral and enteral nutrition.


               There is a lot to be done to achieve the desired level of preparedness of HPN families. Our preliminary experience suggests that it is possible to do this work. There remain significant challenges we will need to overcome together to keep PN-dependent children from needing hospitalization after a natural disaster.


* ASPEN Pediatric Nutrition Support Core Curriculum. 2nd ed. Silver Springs, MD: American Society for Parenteral and Enteral Nutrition; 2015.

LifelineLetter, May/June 2019

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.


Updated in 2015 with a generous grant from Shire, Inc. 


This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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