Do You Have A Plan? Are Healthcare Providers Discussing Emergency Preparedness Planning with Families of Children with Special Healthcare Needs and Genetic Disorders?

Purpose: The mission of the Mountain States Genetics Regional Collaborative (MSGRC) is to ensure access to exemplary genetic and newborn screening services in the eight states of the region (Arizona, Colorado, Montana, Nevada, New Mexico, Texas, Utah and Wyoming). Advancing equitable access to quality health services, particularly genetics services, is a challenge in the mountain state region due to rural and frontier health care access challenges, including geographic barriers and provider shortage. The MSGRC Emergency Preparedness Workgroup surveyed genetics healthcare providers to understand provider perceptions about emergencies, and the associated risks for their patients. Our purpose was to: (1) understand provider risk perceptions regarding the impact of emergencies and disasters on their patients, and (2) identify specific guidelines and practices used by mountain state providers to help families of children with genetic disorders, or other special healthcare needs, be prepared for a natural disaster or other emergency. Methods: We analyzed the 2014 MSGRC Emergency Preparedness Provider Survey to understand risk perceptions associated with ten emergencies that could affect families of children with genetic disorders, and the healthcare provider’s ability to maintain care for them during such emergencies (natural disasters, electricity blackout, snowstorm, widespread flu outbreak, medication or metabolic food shortage, financial crisis, lack of transportation, loss of utilities, home emergency and school lock down). Using multivariable logistic regression modeling, we estimated the effect of provider emergency risk perceptions and practice composition on whether providers discuss emergency preparedness planning with families. Results: For each of the ten emergency types, 28% to 65% of the providers reported that it is likely/ highly likely that the particular emergency would affect families of children with genetic disorders, and the provider's ability to maintain care for them. Natural disaster ranked at the top of their concerns. Only 19% (n=14) of providers indicated that they, and the other providers in the office, discuss emergency preparedness planning with families of children with special healthcare needs. Practices with a dietician on staff were 3.8 (95%CI: 1.2, 15.8) times more likely to discuss emergency preparedness planning. Conclusion: In the mountain states region, an area of vast rural and frontier areas combined with geographic barriers to providing emergency assistance, few healthcare practices have in place emergency preparedness policies, and less than one in five discuss emergency preparedness planning with families of children with genetic disorder and other special healthcare needs. The MSGRC Emergency Preparedness Workgroup is developing fact sheets, education and outreach activities to address this serious problem. Providers indicated that they would like to receive resources to assist them in preparing their families for disasters.