By Sonja Ausen-Anifrani
This summer, I had the opportunity to fulfill my field experience requirement at the Minnesota Department of Health (MDH). I was stationed in the STD and HIV section of MDH and was employed with the task of developing protocol for the Fetal and Infant Mortality Review as it relates to perinatal transmission of HIV in Minnesota (FIMR/HIV). The structure for this process originates from The National Fetal and Infant Mortality Review (NFIMR) process which has acted as a successful framework in identifying gaps that are present in the care of women, children, and families and, subsequently, addressing these gaps in ways which change policy and systems. NFIMR is a collaborative effort between the American College of Obstetricians and Gynecologists (The College) and the Maternal and Child Health Bureau (MCHB) and has been in place since 1990.
The implementation of FIMR/HIV across states is in its infancy; in fact, in 2005, three communities (Jacksonville, Florida; Detroit, Michigan; and Baton Rouge, Louisiana) were selected to develop and implement the FIMR/HIV Prevention Methodology as part of a pilot study. The information gathered from these three sites was then used to improve FIMR/HIV methodology and demonstrate its effectiveness. These findings can be found in the following report: FIMR/HIV Pilot Project: Overview and Lessons Learned. Given the results from this pilot study, the CDC has recommended that certain states without a FIMR/HIV program work on implementation. Minnesota was one such state that received this mandate. Initiatives for creating FIMR/HIV protocols are largely centered on the following:
- Rates of HIV infection among women, particularly women of color, are on the rise
- Twenty-five percent of those infected with HIV are unaware of their status and HIV testing of pregnant women remains inadequate.
- Technology that provides accurate, rapid HIV testing is underutilized.
- Known HIV-infected women may be “in the system,” but services received are not inclusive of reproductive health.[i]
Minnesota is a unique state in that the perinatal transmission of HIV is lower as compared to other areas of the United States. For example, from 2000-2012, there were only eight cases of children who acquired HIV perinatally in Minnesota. The breakdown of these eight cases provides further insight in to the demographics of this transmission rate:
- Time of HIV diagnosis: prior to pregnancy (4), during pregnancy but before delivery (0), at delivery (2), after birth (2)
- Race/ethnicity of mother: White (1), African-American (1), African-born (5), Hispanic (1)
- Residence of mother: Suburban (63%), Minneapolis (12%), greater Minnesota (25%)
- Mother’s region of birth: United States (1), Africa (5), Europe (1), Caribbean/Mexico/South America (1).[ii]
FIMR/HIV Prevention Methodology is comprised of the following steps that complete the full cycle and represent the requirements needed for proper operation:
Data Gathering: This step involves three vital components. First, cases must be ascertained and selected for review. A case is defined as, “HIV-exposed infant/fetus > 24 weeks gestation and < 24 months of age at the time of the review.” [iii] Those working on case selection will utilize a tool that strives to identify priority cases.
Second, data abstraction should be performed on each selected case. Data abstraction conducts a detailed review of the mother’s pre, intra, and post-partum medical records and also reviews the infant’s medical record. An important component to this step is retrieving consent to review medical files of selected cases. Each site is responsible for navigating this request and depending on existing relationships, this step may or may not present challenges.
Lastly, a maternal interview will be conducted. The maternal interview has three sections: one to be completed as soon as possible after delivery, one to be completed two to four weeks after delivery, and one infant assessment. Questions are centered on understanding the paths of the woman and child through the medical system and on the woman’s HIV diagnosis.
Once these three items are collected, they will be compiled into a condensed format and be ready to present for case review. The summary of the case selection, data abstraction, and maternal interview will holistically bring to the fore a picture of the history needed to complete accurate review. The purpose of the data gathering step is to begin to recognize missing steps in care provision for these women and children.
Case Review: A Case Review Team (CRT) must be created in order to provide a thorough review of cases having gone through the data gathering process. This team should be made up of a variety of professionals from public and private agencies that are focused on providing care to women, infants, and children. The purpose of the CRT is to review the information for each case, identify systems issues present, and reach consensus about recommendations to be passed on to the Community Action Team.
Community Action: A Community Action Team (CAT) must be created and comprised of members who have either political influence within the community or fiscal resources that can ensure that large-scale systems change is able to take place. The CAT’s purpose is to review the recommendations from the CRT and define action plans related to these recommendations that lead to systems change.
With the completion of these steps, changes in the community system directly addressing gaps in care should be instituted and long-lasting.
In addition to becoming familiar with the FIMR/HIV Prevention Methodology as outlined above, my field experience involved other tasks. These tasks inlcuded interviewing HIV experts within the Twin Cities, recruiting professionals for the CRT and CAT meetings, calling and reaching out to sites that had recently implemented FIMR/HIV or were experienced at working with larger foreign born populations, reviewing FIMR/HIV forms and editing them for use suited to Minnesota, creating new forms for use and putting together a draft protocol and manual (with recommendations) to utilize for the first FIMR/HIV cycle in Minnesota. As with any new process, the first year will highlight areas of both strength and challenge and will provide insight on how to improve the process for this state.
This experience offered much to my learning about the topic of HIV and NFIMR methodology. Furthermore, this experience highlighted essentials involved in maternal and child health—the health of women, children, and families as it relates to HIV and pregnancy. FIMR/HIV is an integral process in ensuring that this population group receives appropriate, timely, and effective care that can be more easily accessed.
[i] FIMR/HIV Prevention Methodology National Resource Center. Perinatal HIV: A Call for Action in Your Community. Available at: http://www.fimrhiv.org/aboutperinatalhiv.php. Accessed September 6, 2013.
[ii] Minnesota Department of Health HIV/AIDS Surveillance System. HIV/AIDS Perinatal Surveillance 2012. Available at http://www.health.state.mn.us/divs/idepc/diseases/hiv/perinatal/perinatal2012.pdf. Accessed September 6, 2013.