Highlights of Points Made by Individual Speakers
- Pediatricians play a unique role in the health of children and families. Engaging community medical practices in preparedness efforts is essential to building community resilience.
- A systems-based approach is needed to ensure that stakeholders are preparing in the context of other partners in the community, and not in isolation.
- Individual parents and children who experience quarantine or isolation may need behavioral health and other support services to prevent or mitigate traumatic effects from social distancing.
- State and local preparedness and response plans including pandemics should include a module of pediatric health and mental/behavioral health.
- Bringing in stakeholders and adapting other state resources were key points in Illinois’ development of a pediatric annex to their state emergency plan.
In order to adequately integrate the needs of children and their families into state and local emergency plans, it is necessary to involve those groups that represent different populations, as well as use best practices or evidence-informed guidelines. This section of the report brings together identified needs of children and families and discusses how to integrate them into municipal emergency plans. Several examples of issues, including pandemic planning and behavioral impacts, pediatric surge planning, and child care provider issues are discussed to help augment the material that goes into plans.
Esther Chernak of Drexel University School of Public Health described the development of a strategic plan to integrate pediatric practices into community-wide disaster preparedness. A systems-based approach helped to ensure that practices were prepared in the context of other partners in the community. The project was conducted by Drexel University in partnership with the Pennsylvania chapter of the American Academy of Pediatrics (PA AAP) and was funded by the Pennsylvania Department of Health through a Centers for Disease Control and Prevention Cooperative Agreement.
The primary objectives of the project were to identify the current status and needs of pediatric providers in the community with respect to emergency preparedness; identify the expectations of health departments; and formulate recommendations to improve the integration and coordination of pediatric providers. In conducting the project, it was assumed that physicians play a key role in promoting personal preparedness and in risk communications to the public (Garrett et al., 2007; Lasker, 2004; Olympia et al., 2010). It was also assumed that practice-level planning and outreach was important to realize the potential of practices, and that working with pediatric practices would be a paradigm for other primary care providers in the community.
The process was informed by a literature review and interviews with thought leaders and stakeholders in pediatrics, public health, emergency management, information technology, human services, health insurance, and schools/child care. The findings, Chernak noted, were not surprising. Most pediatricians had limited understanding of the public health system (e.g., how the agencies are organized, and their capacity, operations, and resources). They wanted a clear identification of their roles in a disaster, and felt that they had subject-matter expertise to share (e.g., pediatrics, understanding of public fears). Many providers simply do not have the time (or interest) in preparedness planning, but they were very interested in a just-in-time infrastructure for training during a disaster. They want real-time, pediatric-specific information to be able to ensure the continuity of operations and communicate with patients. Importantly, pediatricians want information before the public receives it, so that when patients call, they can speak knowledgeably about the issues and impacts.
It was also found that public health departments had a very limited understanding of pediatric practices, including how providers might function in public health emergencies. They failed to recognize the potential of pediatricians for disaster communications during an incident, and overestimated the capacity for outpatient practices to surge. Readiness has been very focused on points of dispensing (PODs) and mass prophylaxis in the first 48 hours of a disaster, with little planning for what happens after the POD closes. Public health departments also do not have an understanding of where practices are with regard to implementation of electronic records, including the potential and challenges of electronic health records (EHRs).
The first action, in collaboration with stakeholders, was to define the roles and expectations. For most pediatricians, their major role is in their community-based office, providing all aspects of medical care. This offsets the burden on hospitals, particularly emergency departments, Chernak noted. They also support the medical countermeasure enterprise, not just by staffing a POD, but by monitoring for drug interactions, adverse events, and outcomes after the POD closes. Providers also have a role in long-term follow-up and mental health support. Key roles for public health departments include local and state leadership, surveillance and investigation, implementation of disease control measures, surge support, and information sharing.
The project then developed recommendations for public health departments, pediatricians, and the PA AAP in the areas of continuity of operations and surge capacity building; collaborative planning; bidirectional communications; training; children with special health care needs; and schools and child care programs. Chernak highlighted several of the recommendations that she said were most relevant to health care coalitions (see Box 4-1).
Chernak referred participants to a recently released communications tool for pediatric practices1 that includes fact sheet templates for waiting rooms and websites, phone scripts for voicemail and patient messaging, triage protocols, and social media templates. The PA AAP has been reaching out through webinars addressing continuity of operations and practices, mental health issues, and children with special health care needs, and is developing a list of pediatric subject-matter experts who can serve as advisors on an ad hoc basis to county health departments and the state health department.
1Available at https://www.portal.state.pa.us/portal/server.pt/document/1337530/finalaap_toolkit_5_2_13_.pdf (accessed September 9, 2013).
Pennsylvania Strategic Plan Recommendations
• Create a Pennsylvania Child Health Advisory Council for Disasters.
○ Include key stakeholders from across the Commonwealth such as practices, hospitals, schools, child care programs, government agencies.
○ Include a “rapid response” component that could inform county health departments and the Pennsylvania Department of Health on policy and planning around children’s issues during a disaster.
• Create an ad hoc taskforce for electronic health record (EHR) integration into public health activities.
• Public Health: Expand the Health Alert Network; use conference calls and websites to bring pediatric practices better situational awareness during disasters; define data needs (e.g., disease surveillance, mental health outcomes, long-term care outcomes); create a child health desk at the Emergency Operations Center.
• Pediatricians: Participate in the Health Alert Network and other communication modalities, and provide feedback.
• Pennsylvania Chapter of the American Academy of Pediatrics (PA AAP): Coordinate conference calls and webinars; serve as a communications hub; and convey providers needs to public health.
Communication Between Practices and the Public
• Public Health: Integrate practice communication with the public into disaster communication plans; provide early situational awareness, guidance, and support to practices.
• Pediatricians: Build capacity through patient portals, phone lines, text messages, social media, websites, and EHRs.
• PA AAP: Provide technical assistance and develop a toolkit.
Children with Special Health Care Needs
• Public Health: Understand health risks, provide information to pediatricians, coordinate with other public safety agencies, develop new plans and procedures.
• Pediatricians: Promote personal preparedness (e.g., evacuation, backup plans, generators, what to bring to a shelter), coordinated care, and the patient-centered medical home model.
• PA AAP: Facilitate planning, technical assistance, share guidance and best practices, training.
SOURCE: Chernak presentation, June 10, 2013.
With regard to the creation of the recommended Child Health Advisory Council for Disasters, Chernak noted that the state has agreed to instead create a working group that will inform the state with respect to pediatric issues. Other initiatives will involve planning with schools and child care programs, participation in regional health care coalitions, and practice-based projects such as exercises with local and state agencies.
Chernak cited technology (e.g., EHRs, communications platforms) as one of the major challenges moving forward, and resources are a perpetual challenge. She also highlighted the cultural dissonance between the public health and personal health care systems, and intercounty and interstate differences in priorities as challenges to progress.
In conclusion, Chernak said that a systems-based approach to thinking about public health and health care services is critical. It is important to understand what various partners do relative to each other, and not just prepare individual entities in isolation. Pediatricians play a unique role in the health of children and families, and in support of schools and child care programs and other community institutions. Engaging community medical practices is essential in efforts to prepare communities and build community resilience. A participant added that pediatricians also need to be inculcated into incident command and operations so that children are not forgotten during the implementation.
All panelists discussed further how to get health care systems engaged in preparedness issues. They expressed the importance of taking advantage of that moment in time when people are feeling the impact of lack of preparedness, especially as it affects practice and has financial consequences. For example, after a major storm where practices lose power for 3 to 4 days, providers recognize that they might lose their records, lose $60,000 worth of vaccines, or may not be able to communicate with patients, Chernak said. Hunt added that a motivating force for a health care delivery system is the realization that they need to get back to normal business operations as soon as possible. They lose millions of dollars per day by canceling elective surgeries, for example. Frost and Blake agreed, and Frost said that they take advantage of every unfortunate situation in order to point out the pediatric component to it. She reiterated the value of telling a compelling story, noting that the statewide bed capacity analysis she did for California was instrumental in bringing people to the table. Chernak noted that because drawing providers in to preparedness training before an event is so challenging,
AAP is also building capacity to conduct webinars immediately after disasters, lining up subject-matter experts so that they can provide key information to 1,000 or more pediatricians rapidly.
Ginny Sprang, executive director of the Center on Trauma and Children at the University of Kentucky, described the development of evidence-informed disaster guidelines intended to optimize preparedness and response for pediatric populations, and prevent adverse unintended consequences (e.g., panic, noncompliance, poor behavioral health outcomes). Citing the work of noted sociologist Robert Merton, Sprang said that well-intended policies and plans inevitably generate unintended consequences that cannot always be anticipated (Merton, 1936). Leaders are under great pressure to act very decisively in situations that, by their nature, are unique and transactional. Error is an unavoidable component of all social action. Strategies generally address proximal outcomes and it is difficult to anticipate the undesired impacts of more distal outcomes.
The research for the project “Evidence-Informed Guidelines for Child-Focused Pandemic Planning and Response” was done at the University of Kentucky in partnership with the University of Louisville, with funding from the Department of Homeland Security through the Kentucky Critical Infrastructure Program.2 Based on a systematic literature review, Sprang and colleagues developed a toolkit of mixed-method measures (e.g., interview guides, surveys, focus groups, guides, content analysis templates) to collect information from key stakeholders on the gaps and vulnerabilities in systems. Data were collected from diverse stakeholders in six U.S. cities; Mexico City and Juarez, Mexico; and Toronto, Canada (data collection occurred coincidentally as the 2009 H1N1 pandemic influenza was emerging). The findings were used to draft preliminary guidelines which were field tested at the national and
2Sprang referred participants to the full report, available at http://www.uky.edu/CTAC/sites/www.uky.edu.CTAC/files/NIHS_Del_5i_online_copy_revised__FINAL.pdf (accessed September 9, 2013).
local levels. The final recommendations were then formulated and disseminated as a 3-hour Web-based training program.3
Using the University of California, Los Angeles, Post-traumatic Stress Disorder Reaction Index (PTSD-RI), Sprang and colleagues identified a relationship between a disease containment experience and traumatic stress symptoms. Based on the qualitative responses during focus groups, Sprang said that there is something about the disease containment experience that is stigmatizing and stressful in a way that just having H1N1 or severe acute respiratory syndrome (SARS) is not. Parents and children who had no isolation or quarantine experience during either the SARS or H1N1 outbreaks had a mean PTSD-RI score of 5.3, while those who had an isolation or quarantine experience had a mean score of about 22. The anxiety and panic identified in those affected by a health-related disaster triage is complex, and triage, assessment, and intervention strategies are not tailored to these needs. For example, pediatric behavioral health screening was not routine; screening that was done was not evidence-based and not consistent; and screening of family members was rare. Screening also occurred more often in hospital settings versus community settings, and screening for traumatic stress reaction was limited. The relationship between pandemic containment and PTSD symptoms is significant, Sprang explained. About 33 percent of the children who experienced quarantine in isolation met the criteria for posttraumatic stress disorder based on parent reports, as did 25 percent of parents based on their own self-reports. Sprang also highlighted the correlation between parent and child symptoms; about 86 percent of the parents who met the clinical cutoff score for PTSD had children who also met the cutoff. Of those parents who did not meet the cutoff, only about 14 percent of their children met the cutoff. (Sprang acknowledged the potential for contamination of parental perception in the reporting of child symptoms, but noted that young children take behavioral cues from their parents.)
These findings suggest that individual parents and children who experience quarantine or isolation may need behavioral health and other support services to prevent or mitigate these traumatic effects. Sprang and colleagues recommended routine peri- and post-pandemic behavioral health assessment, including trauma screening, for parents and youth who experience isolation or quarantine. Positive identification of PTSD
in individuals indicates the need for an automatic assessment for the presence of behavioral health disorders in those individuals’ family members.
Shifting from parent and child isolation issues to hospital emergency planning, Sprang highlighted several areas of vulnerability identified by the research. For example, hospitals reported that neonatal intensive care units (NICUs) and pediatric intensive care units (PICUs) (which require highly specialized skillsets) were especially vulnerable to staff shortages, even under mild pandemic conditions. Personnel backup plans were often insufficient as available personnel did not have the specialized expertise. To address this, Sprang and colleagues recommended cross-training for areas of potential shortage and three-deep coverage plans.
Prolonged closure of schools creates other vulnerabilities, especially for children who rely on subsidized lunch programs. Sprang noted that few districts were aware of the Pandemic Supplemental Nutrition Assistance Program (P-SNAP),4 and most did not have a plan for food distributions if schools were closed 5 days or longer. In this regard, the recommendations call for further training and education about P-SNAP and development of a food distribution plan to accommodate worker illness or unavailability.
Need for State and Local Pediatric Module
In terms of the state pandemic preparedness and response plans, there was an underlying assumption in the plans that there would be tight coordination across systems, but Sprang noted that frequent staff turnover often results in the exit of responders with pediatric expertise. At the local level, there was an absence of key stakeholders in planning,
4“Section 746 of Public Law 111-80, the Agriculture, Rural Development, Food and Drug Administration, and Related Agencies Appropriations Act, 2010 (signed October 21, 2009) authorizes the Secretary of Agriculture to approve State SNAP agency plans to provide SNAP benefits to households including children certified as eligible to receive free or reduced price school lunches who are enrolled in a school or school district that will be or has been closed for at least 5 consecutive days due to a pandemic emergency.” See http://www.fns.usda.gov/sites/default/files/SP_05_SFSP_03-2010_os.pdf (accessed September 9, 2013).
due again in some cases to staff turnover. Activities focused on building resilient response systems occurred generally just before and during a pandemic event, with limited attention between events. In addition, most plans were adult-focused, but did not address the needs of parents. Although 36 percent of the state plans acknowledge the need for family-level disaster planning, there was little focus on operations or guidance regarding what the essential elements of a plan might be. Only 20 percent of the plans contained any guidelines regarding the design, focus, or implementation of behavioral health triage for pediatric populations.
In response, Sprang and colleagues in June 2011 highlighted the need for all state and local pandemic preparedness and response plans to include a module on pediatric health and behavioral health. Behavioral health professionals should be included in the development of these modules. Recommended elements of such pediatric-focused behavioral health module include
- Clearly defined organizational structure for pediatric response coordination.
- Sample risk messaging targeted to children and families.
- Psychoeducational materials that are developmentally informed.
- Alternative behavioral health service delivery options.
- Listing of pediatric-focused, community-based resources to address psychosocial needs.
- Strategies for just-in-time training.
- Continuum of evidence-informed, pediatric-focused interventions.
- Criteria for evidence-informed, protocol-driven behavioral health response.
- Pediatric-specific ethical and legal guidance.
Evelyn Lyons, Emergency Medical Services for Children Manager for the Illinois Department of Public Health, detailed her state’s development of a pediatric and neonatal surge annex, an appendix to the state medical disaster plan. The annex, developed with funding from the Hospital Preparedness Program cooperative agreements, provides guidance to hospitals and other health care personnel in the event of a large surge of pediatric or neonatal patients.
Illinois is the fifth most populated state in the country, with a total population of 12.8 million, including 2.7 million children (age 15 years and younger). The state has 200 hospitals, 190 of which have emergency departments. Pediatric resources for Illinois children include 15 PICUs and 24 NICUs, 3 of which are actually located in Saint Louis, Missouri, just over the southwest border of the state. Similar to what Frost observed in California, Lyons said that there was a decrease of about 400 licensed pediatric hospital beds within Illinois between 2007 and 2010 (dropping from 2,159 to 1,722). This is particularly concerning in the central and southern part of Illinois, she said, where there are already limited pediatric resources.
Following the release of the National Commission on Children and Disasters report in 2010, Illinois convened a stakeholder group to develop a statewide pediatric and neonatal strategic plan addressing medical surge capabilities and health care system preparedness for at-risk populations. Four workgroups were charged with addressing communication, the decision-making process, system decompression, and standards of care. Lyons provided examples of tools developed by each of the working groups.5 The communications workgroup developed a Pediatric and Neonatal Event Notification Form, a flow chart that guides users through the activation of the surge annex and the notification of key stakeholders and partners.
The decision-making process workgroup developed an algorithm to guide requests for pediatric medical resources. The algorithm includes consultation with pediatric care medical specialists. These are physicians and nurses who are not onsite, but who provide consultation and guidance at the state level in the event of a surge of pediatric patients. The working group defined the roles, responsibilities, and educational requirements of these experts, and developed just-in-time training that these consultants could utilize during an event.
The system decompression workgroup was responsible for developing a method to decompress tertiary care centers. In the event of a large pediatric surge, pediatric tertiary care centers need to be reserved for more critically ill and injured children, and children with conditions that are less urgent may be able to be moved to community hospitals. Hospitals were asked to self-select from the following categories to describe themselves:
5All tools referenced can be found in the “Illinois Department of Public Health ESF-8 Plan, Pediatric and Neonatal Surge Annex Attachments” as of September 2013.
- Category one, pediatric tertiary care centers with PICUs and NICUs that care for any level of patient;
- Category two, community hospitals with some pediatric services for children ages 0 to 12 years (including emergency departments approved for pediatric level);
- Category three, community hospitals with no pediatric or neonatal capabilities that could accept pediatric patients ages 12 years and older; and
- Category four, community hospitals with nurseries that can manage pediatric patients ages 0 to 1 year old.
Lyons noted that the system is based on the decompression model developed by Frost for California, showing the benefit of collaboration between states.
Finally, the standards of care workgroup developed a method to track pediatric patients and aid in the reunification of children with their families. They also designed an objective system to triage pediatric patients to tertiary care centers, and a mechanism for communicating patient information between hospitals and with the pediatric care medical specialist. In addition the workgroup developed a series of patient care guidelines for hospitals less familiar with pediatric patients, advising them on care for the first 96 hours after an event, or until they are able to route the children to a higher level of care or to specialty care as needed. Care guidelines cover, for example, burn care, newborn care, premature newborns, radiation, shocks, and other potential pediatric scenarios.
Stakeholders were key to the whole process, Lyons asserted. The process was also advanced by adapting other state resources, such as the Contra Costa County Decompression Model and New York’s hospital guidelines for pediatric preparedness. The pediatric annex also serves as a framework for other at-risk populations such as burn surge. There is still work to be done, however. The next steps, Lyons said, emphasizing the theme of drills, are to exercise and test the annex, and modify as needed, and to work with regional health care coalitions to integrate these pediatric concepts into regional planning. Coordination of resources, patient tracking, and liability issues also need to be addressed.
Considerations for children’s needs can come from various sectors and organizations. Speakers in this session noted that adapting resources from other states and jurisdictions like Illinois can be helpful if resources are strained and beginning a brand new plan is not feasible. Also, including research and information gathered from focus groups can help