Beginning in the spring of 2010, Illinois Department of Public Health began working on implementing Fetal Infant Mortality Review for HIV. The Case Review Team (CRT) co-chaired by Dr. Mildred Williamson from the Illinois Department of Public Health, included representatives from 13 public and private organizations, including the IL Department of Human Services, HIV/OB specialty care centers, intensive perinatal case management, the Illinois 24/7 Perinatal HIV Hotline, statewide rapid testing on L&D (PRTII), a Maternal Fetal Medicine physician, the Illinois Perinatal Network system, surveillance, and the citywide FIMR project. The CRT reviewed cases that met the following criteria: an infant with a confirmed HIV positive diagnosis; the death of a pregnant mother who was HIV positive; death of an infant born to an HIV positive mother; and a known missed opportunity in an otherwise successful birth to an HIV positive mother. Over the first three months, fifteen cases in total were reviewed, 8 of which included maternal interviews.
The following are the most frequent findings:
1. Most providers that encounter a pregnant HIV + woman do the right thing and follow standard of care, once they know the pregnant woman is HIV-positive.
2. Not all medical personnel are aware of how to appropriately treat and discharge pregnant HIV+ women. Amongst providers, stigma and insensitivity continue to be an issue at certain hospitals.
3. Across the state, timely rapid testing is not consistently offered to all pregnant women who present to labor and delivery without a record of their status. We noted several cases where a delay in testing of a pregnant woman resulted in delayed antiretroviral treatment in the critical period before delivery.
4. High-risk HIV+ women experience a host of issues that adversely complicate their ability to care for themselves and their infants before, during and after their pregnancy. These include mental health conditions, homelessness, drug abuse & addiction, incarceration, incarcerated partners, lack of transportation and domestic violence.
5. Adolescents and youth living with HIV, particularly those perinatally infected, often lack age and developmentally sensitive services, programs and support to address their needs.
Based on these findings, the CRT developed recommendations for intervention divided into five categories: Testing, Screening, Training and Education; Quality Assurance and Medical Records; Specialized Resources and Outreach; Case Management; and Legal Mandates. There are 50 recommendations in the full report.
Under Testing, Screening, Training and Education, the review team suggests Updating rapid HIV testing protocols for pregnant women at all birthing and non-birthing hospitals in IL, building upon the original materials developed for the roll out of rapid testing to hospitals in 2005, utilizing state-funded support staff to offer technical assistance, and disseminating information through the perinatal network structure. Two important messages here are to make rapid testing the standard of care when a pregnant patient presents at an IL hospital with an unknown HIV status and when a patient presents to an IL hospital without a record of prenatal care, this should be noted and flagged immediately for rapid testing. All IL hospitals should develop a standard protocol for the labor and delivery and triage care of HIV+ pregnant women (including known positives and rapidly diagnosed women).
With Quality Assurance and Medical Records, the team suggests
linking the FIMR-HIV case review process to Risk Management or Quality Assurance departments at all sites; if it is determined that a hospital needs to complete and implement corrective action plans in response to an issue that occurs at their site, a follow up protocol should be developed to ensure that such actions are appropriately implemented and reviewed. In relation to healthcare provider procedures, the team recommends that whenever a pregnant and HIV positive woman is involved, if a transfer from one hospital to another is necessary during delivery, it should be reinforced that staff can start AZT at the initial hospital with follow up in the receiving hospital. If the client has been tested, HIV status or HIV test pending should be incorporated into the hospital/ambulance transport log to prepare receiving hospital to act if necessary.
Under Specialized Resources and Outreach, the team suggests creating culturally competent educational and outreach resources for adolescents, immigrants, refugees and non-English speaking women. They also suggest developing peer education programs and support groups across the state, reproductive health counseling for both HIV+ pregnant women and their partners, educational resources for HIV discordant couples, and developing promotional and educational materials across media formats, from brochures distributed in WIC offices to websites that implement text messaging platforms.
Under Case Management, the team suggests defining intensive case management, with a standardized care plan that includes an evaluation of key areas of urgent client needs including but not limited to mental health, substance abuse, housing, corrections, and child welfare. In relation to perinatal case management, Ryan White case managers throughout the state should be trained in basic perinatal case management, specifically on how to effectively serve a pregnant woman living with HIV and link them to care. This process should include annual mandatory training update for all case managers statewide.
Finally, the team suggests the following in relation to the Legal mandates, change the Perinatal HIV Prevention Act to reflect that the 24/7 Hotline should be called when all HIV+ pregnant women, including those with a known HIV+ status, present for delivery; include in the rules of the Illinois Perinatal HIV Prevention Act that a two week supply of AZT syrup, at minimum, be made available for all mothers with HIV-exposed babies discharged on AZT.
These recommendations were all presented to our Community Action Team (CAT). In considering a complete list of recommendations, the CAT focused on issues that could get a quick “win” and issues that had resources. Our current accomplishments are as follows:
1. Protocols for the rapid identification of HIV status among presenting pregnant women at L&D or in triage were collected from each institution and reviewed by a nurse for completeness.
2. Using the Perinatal Network system, information about HIV of a pregnant woman was stressed as important to add to transfer logs.
3. Ryan White case managers throughout the state of Illinois were trained on the basics of perinatal HIV case management.
4. Work has begun on a comprehensive case management training module for Family Case Management, Healthy Start and Ryan White.
5. An agreement with Walgreens was executed to provide AZT syrup for hospitals without an outpatient pharmacy, to ensure that no woman will be discharged with a paper prescription for infant.
For more information on any of the above and a complete list of recommendations, please contact Anne Statton at Anne@pacpi.org
Submitted by Anne Statton, Pediatric AIDS Chicago Prevention Initiative