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Pathways to Congenital Syphilis Prevention: A Rapid Qualitative Assessment of Barriers, and the Public Health Response, in Caddo Parish, Louisiana

Kroeger, Karen, A., PhD*; Sangaramoorthy, Thurka, PhD, MPH; Loosier, Penny, S., PhD, MPH*; Schmidt, Rebecca, MPA; Gruber, DeAnn, PhD, LCSW§

Sexually Transmitted Diseases: July 2018 - Volume 45 - Issue 7 - p 442–446
doi: 10.1097/OLQ.0000000000000787
Original Studies

Background Congenital syphilis (CS) disproportionately affects racial and ethnic minority women, especially in the US South. Although CS is relatively easy and inexpensive to prevent through screening and treatment of pregnant women, CS cases have continued to rise and are concentrated in relatively few US counties and states. In 2010, Louisiana had the highest case rate in the country for primary, secondary, and CS, with the highest number of CS cases in northwest Louisiana, where Shreveport is located.

Methods We conducted qualitative interviews with community members (women and frontline providers) living in Caddo Parish to obtain their views about factors that negatively impact CS prevention.

Results Participants described impediments in the pathways for prevention of CS. Lack of sexual and reproductive health education, discontinuities and fragmentation in health care insurance coverage, a dearth of referral points for prenatal care, and difficulty finding prenatal care providers who accept Medicaid can delay timely and adequate care for pregnant women. Participants reported that low reimbursement for necessary injections and difficulty obtaining required medication challenged efforts to screen and treat pregnant women according to guidelines.

Conclusions Although CS is easily prevented, health system and policy obstacles in pathways to CS prevention and care may need remediation at state and local levels.

Congenital syphilis is prevented by timely screening and treatment of women during pregnancy; however, behavioral, structural, and policy barriers may impede pathways to prevention and require remediation at multiple levels.

From the *Division of STD Prevention, Centers for Disease Control and Prevention, Atlanta, GA;

Department of Anthropology, University of Maryland, College Park, MD;

Department of Health, Thomas Jefferson Health District, Charlottesville, VA; and

§Bureau of Infectious Diseases, Louisiana Office of Public Health, New Orleans, LA

Acknowledgements: The authors would like to acknowledge Eleanor Fleming who assisted with data collection and analysis for the original report.

Conflict of Interest and Sources of Funding: None declared.

Disclaimer: The findings and conclusions in this report are those of the author(s) and do not necessarily represent the views of the Centers for Disease Control and Prevention/the Agency for Toxic Substances and Disease Registry.

Correspondence: Karen A Kroeger, PhD, Centers for Disease Control, Atlanta, GA. kakroeger@hotmail.com.

Received for publication October 30, 2017, and accepted December 22, 2017.

Congenital syphilis (CS) occurs when syphilis is transmitted from an untreated or inadequately treated pregnant woman to her infant. It causes significant infant morbidity and mortality,1,2 and results in an estimated additional US $9969 per case in hospitalization costs beyond that of a healthy infant.3 Congenital syphilis is relatively easy to prevent through early detection and treatment, and the Centers for Disease Control and Prevention (CDC) recommend serological screening for maternal syphilis of all pregnant women during the first prenatal visit. Women who live in high syphilis morbidity areas, or who are at high risk of syphilis infection, should be re-screened early in the third trimester and at delivery.4 In most of the United States, syphilis screening of pregnant women is mandated by law.5,6

Over the past decade, CS has been concentrated among a small number of states with case rates that are persistently high compared to the national case rate. In 2016, there were 628 cases of CS, a national rate of 15.7 per 100,000 live births, a 27.6% increase over 2015. CS rates in 2016 were disproportionately high among black women (43.1 cases per 100,000 live births). Although the largest increases in 2016 were in the west, the south has historically had high CS rates.7 Among 6383 CS cases reported to the CDC from 1999 to 2013, most (83%) were among infants born to black (52%) or Hispanic (31%) women, with more than half of cases (52%) in 2013 reported from southern states.8 This is in line with a review of data from 2008 to 2014, which showed that the CS case rate in the South was consistently higher than that of all other regions for this period.2

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CS in Caddo Parish, Louisiana

In 2010, Louisiana ranked first among states reporting CS cases, with a case rate of 49.8 cases per 100,000 live births.9 The majority of cases were born to black women.10 Seventy percent of infants born in Louisiana are born to mothers covered under Medicaid; 60% of pregnancies are unplanned.11 Caddo Parish, which is located in the northwest corner of the state, had the greatest number of CS cases of any parish in Louisiana.8 The racial and ethnic makeup of residents in Caddo Parish is evenly split between those who identify as black (48%) and as white (48%), yet CS cases are overwhelmingly born to black women.10

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Pathways to CS prevention

The structures to prevent CS are relatively straightforward but “rel[y] on the existence and maintenance of well-structured care pathways.”12 To prevent CS, a woman needs timely diagnosis of pregnancy and initiation of prenatal care, an adequate number of prenatal care visits during pregnancy, and screening for syphilis at appropriate intervals during pregnancy and at delivery. If diagnosed with syphilis, she must be treated with Benzathine penicillin not less than 30 days before delivery.

Delays in initiating prenatal care are associated with CS cases, as are inadequate and complete absence of prenatal care.2 The later in pregnancy a woman initiates care, the fewer prenatal care visits she is able to have. More than a quarter (28%) of the 6383 CS cases reported to the CDC from 1999 to 2013 had no prenatal care at all, and less than a quarter (23%) of women had a first prenatal visit early in their pregnancy.8 Only 14% of women had 10 or more prenatal visits, and the likelihood of a severe infection resulting in significant infant morbidity or death increased as the number of prenatal care visits decreased.8

Among pregnant women who receive some prenatal care, missed opportunities for prevention also occur when providers fail to screen or adequately treat women with syphilis. Nearly 30% (94/314) of 2014 CS case mothers who received some prenatal care had inadequate treatment for their stage of disease; 43% (134/314) had no documented treatment.11

State and local level sexually transmitted disease (STD) programs responding to CS increases need to be able to understand and determine problems that occur along the pathway to prevention of CS. Rapid ethnographic assessment is a team-based qualitative data collection method used to quickly obtain perspectives from persons with direct knowledge or experience of a problem.13,14 Findings are aimed at providing rapid feedback and helping programs develop practical responses, which can include program adjustments, policy changes, or strengthening links among partners.

In 2011, we responded to a request for technical assistance to elicit perspectives of providers and community members in Caddo Parish, Louisiana, on the persistence of CS in the community. Here, we describe findings from the assessment and the subsequent actions taken by the state to mitigate barriers in the pathways to CS prevention.

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MATERIALS AND METHODS

Over 1 week in September 2011, a 4-person team from CDC conducted semistructured interviews to elicit information about critical junctures along the pathway for prevention of CS. Participants included women of child-bearing age, and health care and social service providers, community leaders and other persons with direct experience providing services to vulnerable women. All participants lived and/or worked in Caddo Parish. We recruited providers through a shortlist of identified key informants, through community-based organizations and chain-referral. Although frontline providers cannot speak for women, they often have deep knowledge of the challenges faced by their clients and are in a unique position to offer insight into systems and policy barriers that affect care. Women were recruited with the assistance of local community-based organizations.

Participants gave verbal consent and no incentives were provided. Interviewers explored perceptions of reasons underlying the persistence of CS in the parish, available sexual and reproductive health care for women, women’s use of STD and prenatal care services, barriers to prenatal care and syphilis screening and treatment, and recommendations for preventing CS cases. Interview teams expanded handwritten field notes, which were typed into MS Word and analyzed as qualitative data. Using a qualitative data analysis program, NVivo 8,15 2 team members developed a codebook. The entire team coded interviews, resolved coding differences through discussion and consensus, and produced a draft report of findings and recommendations. The state and local STD programs reviewed the draft findings and provided feedback; the report was then finalized. The protocol received scientific and ethical review and approval in compliance with institutional and federal requirements.

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RESULTS

We conducted 23 individual and 12 group interviews. The 69 participants included 58 females and 11 males, and 32 African-Americans and 37 whites. Interviews took place at community-based organizations; public and private hospitals or clinics; and in correctional settings, schools, churches, and homeless shelters (Table 1). Participants represented a diverse cross-section of persons who provide health and other services to adolescent and young adult African-American women in Caddo Parish, including social workers; primary, prenatal, and STD health care providers; outreach workers; disease intervention specialists; educators; and community leaders. Two group discussions were held with vulnerable women, one with teen mothers and one with adult women at a homeless shelter (Table 2).

TABLE 1

TABLE 1

TABLE 2

TABLE 2

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Timely Diagnosis of Pregnancy

Lack of Sexual and Reproductive Health Information and Awareness

Lack of sexual and reproductive health information and awareness was perceived as an important underlying factor interfering with timely diagnosis of pregnancy and STDs. In Caddo Parish, participants asserted that strong cultural taboos against speaking openly about sex and the state’s abstinence-only sex education policy leave many young women unprepared to recognize the signs and symptoms of pregnancy or STDs. The parish was described as a place where sexual health is rarely discussed, in school or at home, and where health care providers “rarely do anything below the belt.” Consequently, many young women are unaware of measures to prevent either STDs or pregnancy. Young women may not immediately realize they are pregnant and may not be aware of the importance of prenatal care. A local high school visited by the assessment team reportedly had 50 to 60 pregnant students, many of whom were far along in their pregnancies before they initiated care. In a teen mothers’ support group observed by the team, girls aged 13 to 17 years all had children of their own. “No one talks about this thing—no one wants to go there,” said a participant. “People want to talk about bullying, alcohol—that’s hot. But pregnancy and STDs, they’re taboo.”

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Discontinuities in Coverage and Lack of Preconception Health Care

Participants described how a patchwork of coverage types, some with varying criteria for eligibility, left some women uninsured and without health care during critical childbearing years. For example, in 2011, female adolescents were covered under Louisiana Children’s Health Insurance Program (LaCHIP); however, this coverage ended at age 19 years, when they “age out” of coverage. “There are gaps in services,” said a participant. “Patients can be on birth control with Medicaid and not have to pay. But then they turn 18 and are off Medicaid, and they can no longer afford it. It is heartbreaking to think they can’t afford US $50 per month for birth control.” Although some women were eligible for reproductive health services under Take Charge, the state’s family planning waiver program, not all providers accepted Take Charge. A participant explained that although women diagnosed as pregnant could become eligible for the state’s LaMOMs program, which provided pregnant women with comprehensive health care, “6 weeks postpartum, they’re completely cut off.” These discontinuities and disruptions in health coverage and care meant that poor women often had no usual source of care and little opportunity for preconception care or pregnancy planning.

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Timely Initiation of Prenatal Care

Difficulty and Delays in Finding Prenatal Care Providers

Timely prenatal care is usually defined as care that starts in the first trimester (0–13 weeks). In the best-case scenario, the sooner a pregnancy is diagnosed, the sooner a woman and her provider can begin monitoring her pregnancy. In addition to general lack of awareness about sexual health and lack of a usual source of care, participants reported that finding prenatal care was often challenging for poor women due to a dearth of referral points; a shortage of prenatal care providers accepting Medicaid patients; and a situation that occurs when delay in initiating care escalates into a crisis of being unable to obtain any prenatal care at all.

At one time, Caddo Parish had several public prenatal care clinics, but by 2011, most had closed down due to the loss of block grant funding. The last remaining prenatal care clinic, located at the Parish Health Unit, closed permanently during the week of the assessment. Participants lamented the loss of this clinic because it meant that the only remaining option for poor women was the university medical center clinic, which was repeatedly described as overburdened, with appointment waiting times that routinely stretched for several hours, and waits for appointments that could sometimes take months. Many women, participants said, would forego using this clinic because they were unable or unwilling to endure the long waits and would choose to seek care only during emergencies.

Finding prenatal care providers who accepted Medicaid was also difficult. Even though a provider has seen a woman through one pregnancy, participants explained, this does not mean the provider will be available for subsequent pregnancies. Provider willingness to take Medicaid patients is based on a number of factors, including how well established the practice is, the practice payment mix, or seasonal cycles. Thus, with each pregnancy, a woman must begin her search anew. Although the LaMOMs website maintained a list of prenatal care providers, at least half the names were grayed out at the time of the assessment planning, indicating they were no longer taking Medicaid patients. Further, participants said some prenatal care providers avoid taking patients with serious health issues, meaning that women who suffer from chronic health conditions, such as high blood pressure, diabetes, and obesity, can find it more difficult to find a prenatal care provider than do healthy women.

Difficulty finding a provider is compounded when a woman advances into her second trimester, resulting in what participants referred to as “Catch 22.” Many prenatal care providers, participants explained, “will refer anything after 20 weeks because the pregnancy is too far along,” raising concerns about risks associated with unmonitored pregnancies. For women who have their pregnancies diagnosed late in the first trimester, the window of opportunity for finding a provider begins to close and escalates into a crisis when a woman is unable to obtain any prenatal care at all. One participant recounted her personal experience: “So I was getting farther along in my pregnancy, but the doctors started to say they would not take me because I was too far along…I was trying to find a doctor and I was sick, sick….I literally had to show up at the hospital when my water broke. I said, ‘I need to see someone. I’m having a baby.”

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Adequate Prenatal Care

Barriers to Getting Enough Prenatal Care

Adequate prenatal care is defined along 2 dimensions—timing of the initiation of care, and the ratio of the number of prenatal care visits divided by the number of expected visits.16 Participants outlined both psychosocial and structural reasons why women might not receive the recommended number of prenatal visits. Some women are not aware of the importance of prenatal care, or may feel it is unnecessary. “Health care is seen as for crisis management,” explained a participant. “It’s not seen as preventive.” Keeping appointments may be burdensome. Poor women often juggle multiple jobs or shifts, along with child care and other responsibilities. “When you have to block out time, it's a matter of who is going to keep the kids and who will get them home?” said a participant. “A block of time becomes huge.” Housing instability, transportation problems, and food insecurity mean that routine health care appointments, even during pregnancy, may be less of a priority than meeting more immediate needs. Lack of public transportation in Caddo Parish was mentioned often, as well as the long waits in some clinics, both of which could discourage women from keeping appointments.

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Syphilis Testing and Treatment

Participants caring for pregnant women also faced challenges that potentially contribute to missed opportunities to prevent CS. Some said that providers lacked information in the form of health alerts, provider visits, or other forms of communication that could have alerted them to the need to more actively screen for syphilis and ensure that women were followed and treated. “[Syphilis increases] should be front page news,” said one. “It’s like they don’t want you to know.”

Participants said that prenatal care providers often lacked sufficient training and expertise to treat syphilis in pregnant women, which requires monitoring and interpretation of titers, multiple injections, and fetal evaluation. These providers may view their role as “diagnosing,” but not “managing” syphilis, which they perceived as the work of a “specialist,” and outside the bounds of routine prenatal care. Participants reported that pregnant women with syphilis were often referred to the Parish Health Unit STD Clinic for treatment, whereas at the same time, some frustrated and overburdened Parish Health Unit staff complained about providers “dumping” their patients on public health.

Cost and administrative barriers also discouraged providers from treating women with syphilis. Some insurance plans required pre-approvals for administering injections with bicillin, the required treatment for syphilis, which was time consuming and required multiple visits from the patient. The state’s Medicaid managed care insurance plans did not adequately reimburse for the cost of injections, which meant that patients were required to bear the cost, which most patients would be unable or unwilling to do.

Finally, few prenatal care practices had bicillin available to treat women. Bicillin is relatively expensive, requires cold storage, comes in lots of 10, and is rarely used to treat anything except syphilis; thus, most practices do not stock it. Some participants reported writing scripts so that patients could pick up the medication, only to learn that it was not available through pharmacies. “When I call pharmacies and they don’t carry it – how can they not carry it? At this time? … It’s a big issue, making sure providers have access to treatment and get reimbursed. We have all the knowledge now, but we’re making it more difficult for patients to get what they need.”

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CONCLUSIONS

Instead of the “well-structured care pathways”12 needed to prevent CS in Caddo Parish in 2011, participants reported that there were numerous challenges for both pregnant women and their health care providers. Lack of basic information and awareness about sexual and reproductive health, discontinuities in insurance coverage, a dearth of referral points for prenatal care, and difficulty finding providers who accept Medicaid were perceived to contribute to delays in timeliness of prenatal care. The burdens of poverty, costs of co-pays and overcrowded health facilities also deterred some women from obtaining an adequate number of visits during their pregnancies.

In addition, lack of timely information about increases in syphilis and CS morbidity, insufficient training and experience to manage syphilis cases in pregnant women, low Medicaid reimbursement for bicillin injections, and difficulty obtaining and stocking bicillin created barriers for prenatal care providers and likely resulted in treatment delays and patients lost to follow-up.

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Changes Subsequent to 2011

After 2011, the Louisiana Department of Health Office of Public Health’s STD/human immunodeficiency virus (HIV) program and its regional partners implemented numerous measures to improve CS prevention pathways. Measures included forming a Caddo Parish Syphilis Prevention Task Force that included individuals associated with local community health, social service, and faith-based organizations. The task force developed a 3-year plan aimed at engaging priority prenatal, primary, pediatric, and dermatology health providers. The plan included intensified provider visitation to inform prioritized providers about syphilis increases in Caddo Parish and encourage adherence to CDC screening and treatment guidelines. The state and local programs also distributed information about syphilis screening and treatment through a variety of channels, including the state’s public health alert system, delivery of grand rounds, and in-service presentations in key practice locations. In addition, the state shifted resources to add staff in Caddo's Parish Health Unit, including a full-time coordinator for the task force.

In 2014, Louisiana also took steps to enhance the Take Charge Medicaid Waiver Program. It increased the number of covered family planning visits for women from 4 to 7 per year, added STD treatment, and coverage of services for men. The state also passed legislation that took effect in 2014, requiring syphilis and HIV testing of all pregnant women in the first and third trimesters of pregnancy, thus strengthening earlier legislation that had only required testing in the first trimester or at first prenatal visit. Improvements to the state’s CS surveillance system were also implemented, in an effort to improve the timeliness and accuracy of CS case identification17 and facilitate more rapid and thorough follow up of pregnant women with syphilis by the STD program.

To facilitate on-site syphilis treatment and reduce the possibility of treatment delay or loss to follow-up, the state negotiated with Medicaid’s 5 managed care plans to remove pre-approval requirements for bicillin injections. The state also worked with qualifying facilities to help them obtain certification needed to purchase bicillin at Health Resources and Services Administration Office of Population Affairs 340B drug pricing, which greatly reduced costs incurred by health providers, and expanded syphilis testing in new locations. In some instances, the state provided bicillin to facilities at Public Health Service pricing, which is higher than 340B, but lower than retail.

The findings in this assessment are based on the data gathered from a small sample of providers and community members in one Louisiana parish (county) over 1 week. Rapid assessments are meant to provide preliminary understanding of a situation. They are appropriate for exploring perceptions, describing processes, and providing insight into issues; they are not meant to determine frequency or magnitude. Due to the resource and time constraints under which this assessment was conducted, we did not specifically target women with syphilis or syphilis case mothers, whose experiences may differ from the women in this assessment. Nevertheless, we feel that the findings from this assessment provide valuable insights into possible barriers experienced by vulnerable women and their providers, and that these barriers may hinder CS prevention. These insights, however, may not be applicable to other state or local jurisdictions.

This assessment helped to identify problems that can occur along CS prevention pathways, especially at the local level. Although maternal psychosocial and behavioral factors certainly contribute to vulnerability to CS, most of the factors identified in this assessment were health system or policy factors beyond the control of individual women and providers. Laudably, state and local health authorities in Louisiana have taken many positive steps in their efforts to create a more enabling environment for CS prevention. As of 2017, however, CS remains a persistent challenge in Louisiana, as well as in other states, and syphilis cases are continuing to increase in the United States. In 2017, the CDC issued a national Call to Action18 to address CS through specific programmatic efforts, many of which Louisiana already had underway. Addressing the challenge of CS in the United States will require a systemic, holistic approach and the sustained efforts of multiple stakeholders at local, state, and federal levels.

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