Purpose

Pregnant and postpartum (P/PP) women and their infants in the United States (U.S.) may be particularly vulnerable to effects from disasters [1, 2]. The number of federally declared disasters (natural and man-made) has steadily increased over the past half-century [3], affecting every U.S. State and Territory [4]. The highest number was declared in 2011, with 99 major disaster declarations [3] resulting in at least 59.4 billion dollars of damages [5]. The U.S. continues to rank as one of the five countries most frequently affected by natural disasters.

Although the need to understand the impacts of U.S. disasters on P/PP and infant populations has been recognized [6–8], our knowledge about the effects of disaster on their health outcomes and service needs remains limited. Disaster exposure in the U.S. may be associated with poor birth outcomes such as low birth weight, preterm birth, and intrauterine growth restriction [1, 2]. Studies suggest various reasons for these associations, including stress, poor mental health outcomes, exposure to environmental toxins, and the degree of disaster exposure [2, 6, 9–12]. Disasters have also been associated with changes in fertility [13, 14], prenatal care [14], intimate partner violence [15, 16], and substance use [17]. However, many of these associations have not been shown consistently, perhaps partly due to stand-alone studies of limited duration and disparate study designs, measures of exposure and outcomes [2, 18, 19]. Furthermore, there are few post-disaster studies of this population [2]. Even so, in the 2013 Pandemic and All-Hazards Preparedness Reauthorization Act (PAHPRA), pregnant women and children are specifically named as populations with special clinical needs [20].

In an effort to guide post-disaster assessment and surveillance, promote uniformity of measures, and affect public health interventions for disaster-affected P/PP women and infants, the Division of Reproductive Health (DRH) Emergency Preparedness and Response Program at the Centers for Disease Control and Prevention (CDC) initiated a collaborative process with partners nationwide to identify a list of common post-disaster epidemiologic indicators for these at-risk groups. Health status indicators have been created by various governing bodies and organizations to focus on both individual and collective determinants that can affect the health of the public and the adaptation or creation of health programs and policy [21]. Use of health status indicators is familiar to the 59 states and jurisdictions that receive Title V maternal and child health (MCH) Block Grants [22]. Furthermore, newly proposed life course indicators for MCH programs were recently released [23]. However, standardized use of core indicators to measure post-disaster health outcomes is less common even though World Health Organization experts recently advocated use of health indicators to monitor human health aspects and health system resilience and capacity related to disaster [24].

To our knowledge, this DRH collaborative project is the first attempt to identify self-report post-disaster reproductive health indicators related to P/PP women and infants in the U.S. Although we understood the need for large system issues to be addressed at the public health system level (e.g., electronic prenatal care records), we focused on information that P/PP women would report about disaster effects on themselves and/or their family, in the hope that these indicators will guide future researchers and lead to more uniform measurement across studies. Thus, our objectives for developing these indicators were to:

  1. 1.

    identify salient conditions and exposures (e.g., infant feeding, gender-based violence) and outcomes (e.g., maternal and birth outcomes) to be monitored via surveillance or post-disaster data collection,

  2. 2.

    promote use of consistent measures across post-disaster studies, and

  3. 3.

    build scientific knowledge regarding disaster effects on P/PP women and infants.

In this paper we describe the process used to develop the indicators and report the proposed indicators. We believe the proposed indicators can guide the expansion of knowledge of disaster effects on these populations and affect post-disaster public health services, programs, and policies for these at-risk populations.

Description

Throughout this process our efforts focused on catastrophic events defined as any disaster “including terrorism, that results in extraordinary levels of mass casualties, damage, or disruption severely affecting the population, infrastructure, environment, economy, national morale, and/or government functions” [25]. We did not focus on infectious diseases or pandemic illnesses. We started the process by having conversations at national meetings, then working with a small group of experts using a structured methodology.

We began the twelve-month process of developing a list of post-disaster epidemiologic indicators for P/PP women and infants by meeting with partners at two national conferences, the 2011 MCH Epidemiology Conference (http://www.cdc.gov/reproductivehealth/MCHEpi/) and the 2012 Association of Maternal and Child Health Programs (AMCHP) Conference (http://www.amchp.org/Pages/default.aspx). At each conference we asked partners to draw from their experience and expertise to identify critical topics for P/PP women and infants affected by disaster. Partners who participated at either conference were invited to be part of the Indicator Development Working Group (IDWG). We also invited other public health subject matter experts in disaster reproductive health epidemiology who had expertise in one or more of the critical topics identified above for disaster-affected P/PP women and infants. The final working group included MCH epidemiologists, health department staff, representatives from MCH partner organizations, and national experts in reproductive health and disaster. In total, the IDWG (N = 23) was composed of nine federal employees from CDC and the U.S. Health Resources and Services Administration (HRSA), five staff members from different state and local health departments, and nine representatives from academia and MCH partner organizations (see “Appendix” section). Fifteen working group members (65 %) were either physicians or nurses. Members met monthly via teleconference.

The first meeting of the IDWG was held in March 2012. Members revised the list of critical topics to eliminate those that applied to all disaster-affected populations and were not specific to P/PP women or infants. Over the next month, members independently scored each topic for the three populations based on his/her: (1) perception of the topic’s importance, and (2) knowledge of available data sources that collect information on the topic. The scores were aggregated and yielded a final priority score for each topic. Topics were then put in order from highest to lowest priority for each population of interest. As the IDWG moved forward, we evaluated whether these topics should be identified as indicators, especially focusing on whether the topics are actionable, i.e., where public health programs, interventions, and policy can be used or adapted to meet needs. Other criteria were considered, such as whether the respective item: (1) could be measured quantitatively; (2) was clearly important to health or health care; (3) could yield information on health-related behaviors or health system performance; and (4) could be applied across diverse settings and cultures [26, 27].

The IDWG divided into three subgroups, one for each population of interest, i.e., pregnant women (n = 8), postpartum women (n = 8), and infants (n = 7), to review the topics, propose the indicators, and identify self-report measures for each indicator and relevant questions for each measure. Staff from the DRH Program for Emergency Preparedness and Response facilitated each subgroup. Focusing on their respective subgroup population, IDWG members worked independently and collectively on the above tasks via three or more teleconferences over 4 months. Questions for each measure were taken directly, or slightly adapted, from pre-tested questionnaire items in the Behavioral Risk Factor Surveillance System (BRFSS), Reproductive Health Assessment after Disasters (RHAD) Toolkit, Natural Disaster Morbidity Surveillance Individual Form (NDMSIF), National Immunization Survey (NIS), National Intimate Partner and Sexual Violence Survey (NISVS), National Survey of Children’s Health (NSCH), and the Pregnancy Risk Assessment Monitoring System (PRAMS). Usually the adaptation involved changing the time period referenced in the question, e.g., from ‘during this last year’ to ‘since the disaster’. When an existing question could not be identified for a particular measure, the subgroup created a new question adhering as closely as possible to previously pretested language found in other questionnaires. When multiple questions existed for a measure, preference was given to questions in (1) the RHAD Toolkit because they are specifically designed for and tested for use among disaster-affected P/PP women or (2) PRAMS since users would have an understanding of the respective characteristic among their statewide PRAMS population of P/PP women.

Several measures required the development of new questions by the IDWG, most of which are directly related to disaster-effects on access to different types of health and social services. This is attributed to the IDWG’s decision to measure access through a series of four questions: (1) did the women perceive a need for the service, (2) was she able to obtain the service, (3) if yes, where did she obtain the service, (4) if she did not, why not (barriers). These four questions were used as consistently as possible across all topics pertaining to access.

Some issues frequently came up in discussions across subgroups but were beyond the scope of this initiative because our focus was on capturing self-report measures. Large systems issues, such as use of vital statistics or screening tools, were moved to a section in the indicator document called “Other Measures.” This section includes mental health assessments and screening tools, vital statistics to identify infant birth outcomes, forms to collect information on reportable communicable diseases, and a screening tool for alcohol use and dependence.

Other topics, such as electronic prenatal care records and newborn screening, were eliminated during the process because they were not self-report measures. Even though electronic prenatal care and newborn screening records are important after disaster, we felt that those large system issues need to be addressed at the public health system level where the ecological impact of a disaster on health systems can be tracked.

After the subgroup work was completed, the DRH program staff examined all indicators and measures with corresponding questions selected by the different subgroups, focusing as much as possible on uniformity of indicators and measures for all subpopulations. Therefore, not every decision made by the subgroups was included in the final list of indicators and measures, but deviation from subgroup decisions was uncommon. Also, rarely subgroups advocated different approaches to measuring an indicator in their local area; if so, both measures were included so the user can choose what works best among his/her population. For example, when choosing measures of family and social support, the subgroup identifying indicators for postpartum women advocated use of the more general measure of presence of social support using the question from BRFSS while the subgroup identifying indicators for pregnant women advocated use of PRAMS standard items that list the perceived tangible supports. As a result, in the final list of indicators the measures and questions for support are different for P/PP women.

The revised indicators and measures with corresponding questions for each subpopulation were then distributed to all members of IDWG. We focused the last conference call on final comments, and the IDWG approved the indicators and measures. The final 25 indicators selected with their 90 measures for disaster-affected P/PP women and infants are available at http://www.cdc.gov/reproductivehealth/Emergency/PDFs/PostDisasterIndicators_final_6162014.pdf. The indicators and corresponding measures are organized by population subgroup: pregnant women (Indicators = 9; Measures = 24; Table 1); postpartum women (Indicators = 10; Measures = 36; Table 2); and infants (Indicators = 6; Measures = 30; Table 3). Indicators appear in the order in which they were prioritized, with those of highest priority listed first. Some indicators, i.e., breastfeeding, access to infant supplies, and access to WIC, are the same in the postpartum women and infants sections but appear in different order due to their priority for the respective subgroup.

Table 1 Indicators and definitions for pregnant women affected by disaster
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Table 2 Indicators and definitions for postpartum (PP) women affected by disaster
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Table 3 Indicators and definitions for infants affected by disaster
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In the indicator document, each indicator includes a declarative title, an explanation of its public health importance, and its corresponding measure(s) found in http://www.cdc.gov/reproductivehealth/Emergency/PDFs/PostDisasterIndicators_final_6162014.pdf. Each indicator includes a series of questions complete with skip patterns that may reflect the varying needs of the populations of interest. This design allows the series of questions for each topic to become direct inserts into existing or new questionnaires, acknowledging that users may need to act quickly if responding to a disaster. The largest proportion of questions (36 %) were taken directly or adapted from questionnaire items included in the RHAD Toolkit, 31 % were new, and 18 % were from PRAMS, 11 % from other questionnaires, and 4 % combined RHAD and other questionnaires (Fig. 1).

Fig. 1
figure 1

Sources of questions (N = 83) for post-disaster indicators for pregnant and postpartum women and infants. 1 PRAMS Pregnancy Risk Assessment Monitoring System. 2 RHAD Reproductive Health Assessment After Disaster. 3Other includes BRFSS Behavioral Risk Factors Surveillance System, NIS National Immunization Survey, NDMSIF Natural Disaster Morbidity Surveillance Individual Form, NISVS National Intimate Partners and Sexual Violence Survey, and NSCH National Survey of Children’s Health

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Assessment

We encourage our partners in disaster-affected areas to use these indicators and measures—testing them for relevancy and completeness—and report their experiences. These reports and future conversations will assist the field of disaster reproductive epidemiology related to U.S. P/PP women and infants (currently in early stages) to grow.

It is important to note that we do not envision that all indicators or measures will be used in every assessment or surveillance, but that the user will select indicators and measures based on his/her data needs, data availability, and those that are most appropriate for the setting. For users with less familiarity with MCH issues, we felt it important to present them in priority order. This may also be useful when the number of questions on post-disaster data collection forms pertaining to P/PP women and infants is limited, and choices must be made about which to include.

Since most existing survey tools and surveillance systems do not measure disaster effects, many of the items from other questionnaires that were selected to serve as questions had to be adapted. New and adapted questions will need to be pretested before general use. We recommend that these items be pretested using cognitive and/or field-testing procedures described in PRAMS Model Protocol 2009 version [28].

Because of limited data to inform the identification of critical indicators and supporting measures for disaster-affected P/PP women and infants, the IDWG drew from their own experience and expertise in addition to peer-reviewed literature and surveys. Therefore, we believe that the indicators and measures will be especially relevant to users serving these populations and meet a wide spectrum of data needs. Furthermore, we found that because the IDWG comprised various partners from different perspectives, our discussions were rich and deep and included real life examples of how these indicators can be used across public health systems.

Conclusion

We believe that use of these proposed indicators and measures will promote uniformity of measurement of disaster effects among U.S. P/PP women and their infants and assist public health practitioners to identify these populations’ post-disaster needs and public health resources to aid in their recovery. However, we also recognize that while we used a systematic approach to identifying these indicators and measures, this set will need further examination, use, and conversation as the field of reproductive health disaster epidemiology further develops. Therefore, we encourage our partners to share their experiences using these indicators by reporting their experiences to the DRH Program for Emergency Preparedness and Response at this website http://www.cdc.gov/reproductivehealth/Emergency/index.htm or by email at drhemergencyprep@cdc.gov. We look forward to continuing the conversation and improving our understanding about how best to identify and address post-disaster needs among U.S. P/PP women and their infants.