在美国，需要肠外营养（PN）的儿童数量庞大，在进行PN的过程中，一旦电力中断导致输液泵停止工作，或地震等自然灾害导致PN来源运输困难，都可能对这些儿童造成不良影响。
为了调查使用PN患者的家庭对灾难的应对情况，洛杉矶儿童医院、南加利福尼亚大学对34个患儿家庭进行问卷调查并随访，发现68%的家庭无应急方案。通过指导并配送灾难应对工具箱，这些家庭对灾难的准备情况显著改善。
JPEN J Parenter Enteral Nutr. 2016;40(4):128-129.
Disaster Preparedness in Families With Parenteral Nutrition-Dependent Children: Can We Make a Difference?
Khadija T. Toor; Natalie Demeter; Rita V. Burke; Jeffrey S. Upperman; Russell J. Merritt; Catherine J. Goodhue.
Children's Hospital Los Angeles, Los Angeles, CA, USA; University of Southern California, Los Angeles, CA, USA.
Purpose: To improve disaster preparedness of families with parenteral nutrition (PN)-dependent children with education and distribution of a personalized disaster survival tool kit. Approximately 14.6 million children in the United States have special healthcare needs. Chronic conditions increase the risk of adverse outcomes following a disaster. Condition-specific disaster plans may limit the negative health outcomes of children with special healthcare needs. Families remain unprepared for a disaster in spite of significant special healthcare needs and concern about disasters. The American Academy of Pediatrics recommends a completed emergency information form (EIF) be provided to families with a summary of pertinent medical information and any special healthcare needs that their children have. Periods of normalcy are the best time to develop disaster preparedness plans. At Children's Hospital Los Angeles, we care for many families with children receiving PN to maintain their hydration and nutrition. Power outages or lack of transportation after a disaster like an earthquake may have serious consequences for this vulnerable patient population.
Methods: After Institutional Review Board approval, families of PN-dependent children were approached during their intestinal rehabilitation clinic visit and agreed to participate. At the same clinic visit, we conducted a 5-question baseline survey and then distributed a personalized disaster toolkit. The same survey was conducted over the telephone at 2- and 4-month intervals. Unique identifiers were used to match baseline, 2-month, and 4-month follow-up survey results. The individualized disaster toolkit included (1) 4 D-cell batteries for use in PN pumps, (2) 150-W power inverter, (3) waterproof flash drive/USB preloaded with pertinent documents, and (4) physical paper documents including medical summary, list of medications, EIF, and supply lists.
Results: Thirty-four families agreed to participate in our study. At baseline, 68% of families did not have a family emergency plan, and 47% lacked a basic emergency supply kit. Ninety-one percent of families lacked a completed EIF. While all families had extra batteries at home for the PN pump, only 18% had backup generators. Median confidence level was 5 on a scale of 1-10. At the 2-month survey, 65% of families had a family emergency plan, and 76% had a basic emergency supply kit. Twenty-four percent of families had backup generators. Fifty-percent of families had a complete EIF. The median confidence level was 7. At the 4-month survey, 88% of families reported having a family emergency plan, and 91% had a basic emergency supply kit. Thirty-two percent of families had backup generators. Eighty-eight percent of families had a completed EIF with the help of their pediatricians. The median confidence level was 8.
Conclusions: In general, families with PN-dependent children did not feel prepared for a disaster. With individual disaster teaching, our PN families increased their home disaster preparations. We will continue to work toward refining the disaster survival toolkit, as it has effectively shown to improve the confidence level of the families. Our long-term goal is to standardize the disaster survival tool kits and establish preparedness guidelines.
Financial support: NAPNAP Foundation grant was awarded to C.J.G.
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