The LA HOPE project addresses the need for a different type of Fetal-Infant Mortality Review (FIMR) in Los Angeles County (LAC)—one that will provide timely and representative information about a large population. Given the enormity and vastness of LAC, using the old LAC FIMR methodology provides a limited picture of the challenges LAC faces in preventing fetal/infant mortality and caring for families who have experienced a fetal or infant loss. Although overall fetal/infant mortality rates have been stable during the past few years, they continue to be a health challenge to LAC, the most populous county in the United States, where approximately 150,000 live births occur in 69 birthing hospitals spread over 4,000 square miles.
Between 2002–2007, LAC experienced more than 1,550 fetal and infant deaths annually; African American mothers consistently had a rate of infant and fetal mortality twice that of White mothers. To address fetal and infant mortality problems, LAC implemented the FIMR project in 1994, each year reviewing 44 cases of African American mothers residing in a few selected zip codes, due to limited resources. Because most data collected by the old LAC FIMR heavily depends on medical chart abstractions, critical data such as preconception health, psychosocial factors, and risk-taking behaviors during pregnancy, and bereavement services were usually poorly documented.
The goal of the project is to improve birth outcomes in LAC through the creation and use of a comprehensive surveillance system, providing health-related service organizations with high quality population data to support action-oriented, community-based collaboration to improve fetal and infant mortality rates in LAC. The specific objectives of LA HOPE are to: (1) establish a comprehensive surveillance system in LAC to monitor maternal/infant health indicators related to fetal/infant mortality, replacing the old LAC FIMR case review methodology; (2) apply an evidence-based approach to identifying risk factors associated with fetal/infant loss; and (3) assist local health departments and CBOs in planning and designing evidence-based programs and policies to reduce fetal/infant mortality in LAC and to help families who have experienced losses.
The process used to determine that this practice is an inventive use of an existing tool was a literature review, including a search online for other population-based FIMR projects. A valuable source of information was The Evaluation of FIMR Programs Nationwide: FIMR Program Structure, Organization and Process, produced in 2001 by the Women’s and Children’s Health Policy Center at Johns Hopkins University Bloomberg School of Public Health. As part of the evaluation, 74 FIMR programs were surveyed, and none had the same approach as that used by LA HOPE. Most FIMR projects follow the traditional model, which involves a case-review format, providing in-depth medical information on a small number of cases.
In contrast, LA HOPE uses a population-based survey approach to collect data regarding maternal experiences, attitudes, and behaviors, rather than just clinical data. This epidemiologic approach is further enhanced by the fact that LAC concurrently conducts the LAMB (Los Angeles Mommy and Baby) project, which can be used to generate “control cases” based on race/ethnicity, age, and residence, for comparison. With the ability to conduct case-control research, LAC can analyze FIMR data from a huge population using scientific methods that allow identification of potential causes of fetal/infant loss. LA HOPE differs from other approaches to address county FIM in that it uses an evidence-based approach to assess a countywide population. Some of the LA HOPE data can be found at a state and country level, but there are no other counties in the United States that look at a large sample of linked birth and death records along with an in-depth survey that focuses on a women’s experiences during the perinatal period. The traditional FIMR model has been adapted to serve the needs of a diverse, broadly dispersed population that would not be adequately served using a review of only 44 cases per year.
The membership composition of the Community Action Team (CAT) and the Case Review Team (CRT) differ from traditional county CATs and CRTs; LA HOPE is conducted alongside the LAMB project, allowing for case-control studies. The most similar project in the NACCHO Model Practice Database is the Fetal and Infant Mortality Review carried out by the Boston Public Health Commission because it also adapts the traditional FIMR model to meet local needs. Their adaptation involves an in-depth questionnaire designed to reveal the women’s own sense of their experiences and to guide bereavement counseling. This project does not seek to produce population-based trends related to fetal/infant mortality or to serve the needs of a large, diverse, and dispersed population.
Agency Community RolesThe LA HOPE project addresses the need for a different type of FIMR in LAC—one that will provide timely and representative information about a large population. Using a traditional FIMR methodology provides a limited picture of the challenges LAC faces in preventing fetal/infant mortality and caring for families who have experienced a fetal or infant loss. Although overall fetal/infant mortality rates have been stable during the past few years, they continue to be a health challenge to LAC. The process used to determine the public health issue’s relevancy was a traditional FIMR analysis conducted in 2004 in Antelope Valley (AV) on 53 infant deaths. Between 1999 and 2002, the infant mortality rate in AV had increased from 5.0 to 10.6 per 1,000 births. Of most concern was a spike in the African American rate, rising from 11.0 per 1,000 live births in 1999 to 32.7 per 1,000 live births in 2002. The FIMR review did not reveal potential causes for the increase. As a result, in 2005, the Department of Public Health Maternal, Child, and Adolescent Health (MCAH) developed the LA HOPE project to track and explain trends related to fetal/infant mortality.
The LA HOPE project was piloted in Service Planning Areas (SPAs) 1 and 6, the AV and South Los Angeles, respectively. In contrast to the old LAC FIMR approach, which takes approximately 24 hours of a public health nurse’s time to obtain data for a single case, LA HOPE took only an average of three hours for one case. The usefulness of the data led to a state and county consensus to replace the traditional FIMR with LA HOPE. LA HOPE has been sampling from among all affected women since May 2006. The LA HOPE project has addressed the issue of the need for a new data collection system by implementing population-based surveillance. Using data from LA HOPE, MCAH has been able to calculate prevalence rates for selected health indicators and has been able to show that many of the mothers who experienced fetal/infant loss were at risk prior to their pregnancies. For example, 36 percent did not have health insurance, 5 percent were teenagers, 5 percent already had four or more children, 64 percent did not take multivitamins, 13 percent smoked, and 44 percent had some sort of medical condition. Maternal medical and psychosocial issues were highly prevalent during and after pregnancy, and 52 percent reported depression after the baby’s delivery.
The findings from LA HOPE have also assisted MCAH in its efforts to reduce fetal/infant mortality by focusing interventions on policy issues identified by the study, such as preconception health, perinatal mental health, racism, and healthy weight for pregnant women. The interventions implemented and justified in part due to the LA HOPE findings included establishing the following: The Los Angeles County Preconception Health Collaborative (LAC PHC), the Los Angeles County Perinatal Mental Health Task Force (LAC PMHTC), the LAC ALC on racism and FIM, and the Los Angeles County Healthy Weight for Women of Reproductive Age Action Learning Collaborative (LAC HW ALC).
Costs and ExpendituresLA HOPE launched its third year in May 2008, funded for the duration of the project by an MCH state grant. LAC MCAH programs support the project with in-kind matching for staffing and supplies. The overall annual budget to operate LA HOPE is $160,000, which is used for standard operating expenses and to purchase incentives for the sampled mothers, even if they choose not to complete the survey.
ImplementationThe pilot project began in October 2005 and continued through February 2006. The countywide surveillance system began in May 2006 and is ongoing. The goal of improving birth outcomes in LAC is being achieved by accomplishing each of the three main LA HOPE project objectives.
To achieve objective 1, we designed and updated a relevant survey with understandable questions to ensure high quality data. We maintained a high response rate (>50 percent) and completed four waves of data collection per year. We tracked responses, keeping the database current for proactively soliciting respondents. We achieved a large sample size for analysis by combining data with the LAMB project. We ensured that more than 80 percent of birth and death certificates match. We refered 100 percent of self-identified mothers to grievance resources as a direct service to survey participants and provided gift certificates as an incentive for completing the survey and as a form of expressing condolences for all mothers who are contacted regardless of whether they complete the survey.
To achieve objective 2, we thoroughly cleaned data by identifying outlier responses and checking that skip patterns were followed to ensure high quality data. We ran basic frequencies on all health and demographic indicators to explore patterns in the data. We calculated the actual prevalences of all important indicators by adding sample weights to the analysis to accurately reflect trends in the LAC population. We performed all cross tabulations of interest to LAC MCAH REP and other community-based organizations to explore correlations. We conducted regression analyses to determine the relative affects of different demographic and health indicators on fetal/infant mortality.
To achieve objective 3, we annually write and post online at least two health briefs based on data analyzed from LA HOPE. We annually conduct at least four data requests issued by local health departments and CBOs and meet in-person with at least eight CBOs, coalitions, collaboratives, and/or SPA-specific task forces. We annually share LA HOPE findings with the California State MCAH Program. We refer 100 percent of self-identified grieving mothers to support services. We support organizations implementing programs to decrease FIM. We established the Grief and Bereavement Resource Center. We aim to improve risk-appropriate obstetrical care and address the role of racism in FIM.
We experienced a high turnover of volunteers (yet they provide invaluable assistance); our data must serve community not academia alone; inter-program communication is critical; we must constantly review and modify project timeline and survey. We should offer paid positions when possible; involve CBOs in structuring survey; increase number of inter-program meetings;make mailings more efficient; and improve upon questions.
Due to the success of the project with respect to each of its three main objectives, the state and county Maternal, Child, and Adolescent Health Programs continue to support the LA HOPE Project. The Los Angeles County MCAH programs have formed several collaboratives that include researchers, epidemiologists, health educators, local county agencies, media, community organizations, local community leaders, and elected officials to identify and implement strategies and interventions to improve FIM in Los Angeles County based in part on the LA HOPE project findings. The community stakeholders have been long-term partners with the MCAH programs and have been supportive of the LA HOPE project since its inception. They were involved when LAMB was first implemented, and later when the need for LA HOPE became evident due to the LAMB results. Their commitment is ensured because alone they do not have the resources or staff to collect the information critical for evaluating their own programs designed to reduce FIM. When pooling resources with LAC MCAH, they achieve their own project objectives.
The stakeholders and LHD are committed to improving FIM in LAC through designing evidence-based prevention and intervention strategies. Several coalitions have formed due, in part, to the findings of LA HOPE and its sister project, the Los Angeles Mommy and Baby (LAMB) Project. These coalitions include The Los Angeles County Preconception Health Collaborative (LAC PHC), the Los Angeles County Perinatal Mental Health Task Force (LAC PMHTC), the LAC ALC on racism and FIM, and the Los Angeles County Healthy Weight for Women of Reproductive Age Action Learning Collaborative (LAC HW ALC). The LHD continues to seek opportunities for grant writing and maximizing resources for the collaborative efforts of all the stakeholders. The MCAH programs have secured additional funding, $1 million over five years, through a data strategic partnership with First 5 LA for the LAMB project. When analyzed together the two projects, LA HOPE and LAMB, result in powerful sample sizes, revealing critical associations between specific demographic and health indicators and birth outcomes in LAC. Using respondents from both surveillance systems allows for case-control research on a county level, thereby serving the needs of LAC, which has approximately 10 million residents.