Ginsburg, Amy Sarah; Hoblitzelle, Charles W; Sripipatana, Tabitha L; Wilfert, Catherine M
In resource-limited settings, prevention of mother-to-child transmission (PMTCT) of human immunodeficiency virus (HIV) programs reduce the number of infant HIV infections . For infected persons who have access to HIV care and treatment services including highly-active antiretroviral therapy (HAART), there is a decrease in morbidity and mortality [1,2]. However, the PMTCT and care and treatment efforts often function independently, without coordination or linkages. Consequently, HIV-infected mothers and their HIV-exposed infants are lost to follow-up. To begin to evaluate the linking of care and treatment with PMTCT services, we undertook a review of key indicators from our PMTCT database and recorded reporting practices.
A multicountry PMTCT effort supported by the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) and conducted in accordance with individual local Ministries of Health, provides routine HIV counseling and opt-out testing for consenting pregnant women, as well as antiretroviral prophylaxis in compliance with national policy . Data are collected at the facility level and represent program results among the subset of women seeking antenatal and/or labor and delivery services. Each site continuously records patient data about counseling, testing, HIV status, and antiretroviral prophylaxis, among other indicators, and submits a report using a standardized form. While every effort is made to promote standardized definitions of key program indicators related to PMTCT services, there are sometimes subtle differences in these indicators according to national polices and guidelines. These quantitative progress reports are submitted to EGPAF quarterly for US government-funded sites and biannually for privately-supported sites. EGPAF staff enters all of the reviewed quantitative data included in the progress reports in a central database (FileMaker Pro 8; FileMaker Inc., Santa Clara, California, USA).
From January 2005 to June 2006, data were submitted from EGPAF-supported PMTCT programs in 18 countries. We reviewed the central database for any indicators of follow-up care collected through the PMTCT effort and gathered data from the following questions requested from each site: (1) the number of pregnant women who started HAART during pregnancy; (2) the number of infants started on cotrimoxazole prophylaxis at 6 weeks, a parameter of identification and follow-up of HIV-exposed infants; and (3) the number of infants tested for HIV when laboratory diagnosis (HIV DNA polymerase chain reaction for infants less than 12 to 18 months of age and rapid antibody testing for older infants) was possible.
Extraction of data from the database revealed that from January 2005 to June 2006, 1 289 209 pregnant women were seen in 1396 different clinics (770 clinics at the beginning of the period increasing to 1165 clinics at the end of the 18-month period with individual clinics added and leaving our programs throughout) in Cameroon, Congo, Cote d'Ivoire, Dominican Republic, Georgia, India, Kenya, Lesotho, Malawi, Mozambique, Russia, Rwanda, South Africa, Swaziland, Tanzania, Uganda, Zambia, and Zimbabwe. A total of 1 250 443 (97%) pregnant women were counseled and 1 066 606 (83%) were tested, of whom 970 495 (91%) received results, with 102 336 (10%) testing HIV-positive. During this same time interval, PMTCT antiretroviral prophylaxis was dispensed to 81 384 (80%) mothers and 52 342 (51%) infants .
Clinics in 14 countries reported a total of 1388 of 98 304 HIV-positive pregnant women receiving HAART. The majority (86%) of these clinics had fewer than 10 pregnant women on HAART per reporting period. In at least one interval, 11 clinics reported having 25 or more (average, 44; range, 25 to 72) on HAART. Of note, the HAART received by these women was generally not at PMTCT sites and the vast majority of women were not screened or staged for HAART at PMTCT sites (data not presented).
From data submitted, 9060 infants, or 8.85% of those born to HIV-positive pregnant women, were followed and treated as HIV-exposed, as measured by those who received cotrimoxazole prophylaxis at 6 weeks of age. In at least one interval, 29 clinics reported having 50 or more (average, 89; range, 51 to 262) infants on cotrimoxazole at 6 weeks of age. Clinics in 15 countries reported HIV testing of infants, and 1024 infants of a total of 7158 (14%) infants tested were HIV-positive.
The percentage of all PMTCT clinics submitting data regarding the number of pregnant women receiving HAART was only 1% at the end of the first 6 months and increased nearly 10-fold to 9% by the end of the final 6-month reporting period. At the close of the first 6-month reporting period, 11% of all clinics submitted data on the number of infants on cotrimoxazole at 6 weeks of age and this figure rose to 17% by the end of the last 6-month reporting period. The percentage of all clinics submitting data on the number of infants HIV tested doubled from 10 to 20% when comparing the same time periods. The clinics that showed higher reporting on one indicator were not necessarily the same clinics that demonstrated increased reporting on other indicators. In many cases when clinics did not report on a particular indicator, there may be no report because the specific indicator was not tracked, the service was not provided, or the service was available but not utilized.
Care of HIV-infected pregnant women and their children begins with diagnosis of the mother and is followed by a PMTCT intervention, management of the mother's HIV infection, and identification and management of the HIV-exposed infant. In many resource-limited settings, implementing this continuum of care requires linkages between different healthcare-providing services. Without appropriate and co-ordinated integration of services for mother and child, the pregnant woman and her HIV-exposed child are forced to navigate separate healthcare facilities where information can be lost or not communicated. As longitudinal or chronic care is new to most facilities, such simple necessities as a unique patient identifier have often not been developed. There is significant loss to follow-up.
Beyond counseling, testing, and the provision of antiretroviral prophylaxis, effective PMTCT programs need to expand to include support services integrated into existing maternal-child health (MCH) systems. Training MCH providers in the recognition and staging of HIV infection, including CD4 cell counts is optimal and can allow care and treatment of HIV-infected pregnant women to occur within MCH services. This integration effort can reduce time-to-treatment initiation for the HIV-infected mother . Routine HAART for immunocompromised mothers, and prophylaxis for opportunistic infections are important for maternal and infant survival [2,5]. At Kilimanjaro Christian Medical Center in Tanzania, one of the centers that reported 25 or more HIV-positive pregnant women on treatment, training of a key obstetrician in care and treatment, including staging and HAART, was instrumental in integrating care into MCH services (W. Schimana, personal communication, 2006). This, in addition to training courses, prompted other adult physicians to realize that they could treat mothers as well.
Recognition of HIV-infected pregnant women permits identification of HIV-exposed infants in a well-child clinic if maternal information is routinely available on the infant's hand-held record. With routine linkage of the mother's HIV serostatus to her infant, appropriate diagnosis and management can ensue . The following of HIV-exposed infants is exceedingly challenging, however, as in many resource-limited settings, the majority of deliveries occur outside healthcare facilities . Infants return for immunizations but are not identified as HIV-exposed unless the mother brings her antenatal card or is specifically asked her HIV status. Loss-to-follow-up of HIV-exposed babies is common [8,9]. Although documentation of the mother's HIV serostatus as tested in a PMTCT program on the infant hand-held record is not routine in most settings, it can facilitate identification of HIV-exposed infants for healthcare providers (A. Mahomva, personal communication, 2006).
An essential first step for monitoring the follow-up of HIV-exposed children is to note the number of babies on cotrimoxazole at 6 weeks of age. These infants are at risk of HIV infection, with its attendant mortality of over 50% by 2 years of age . Very few HIV-exposed infants are identified, if actually seen, at 18 months of age for diagnosis by antibody testing. For example, in a PMTCT service setting in Johannesburg, South Africa, more than one-third of infants never return for follow-up and 85% are lost to follow-up by 12 months of age . In our own database, whereas 41 038 HIV-exposed infants were dispensed postpartum antiretroviral prophylaxis, only 8740 (9%) infants born to HIV-positive mothers were identified and reported as HIV-exposed at their first immunization visit and 4320 (4%) were identified and reported at their third immunization visit. Although infants may routinely receive immunizations, they may not be identified as HIV-exposed. The infants will remain in the system but their HIV exposure status is unknown.
At Mulago Hospital in Kampala, Uganda, where they reported having 50 or more HIV-exposed infants on cotrimoxazole at 6 weeks of age, increased infrastructure to provide comprehensive HIV care, including HAART, and to improve postnatal follow-up of both HIV-infected mothers and their infants facilitated the linking of mother to child and the integration of care (P. Musoke, personal communication, 2006). The first postnatal visit at 6 weeks is organized with a counselor and medical officer to see the mother and child and have blood drawn from the child for diagnostic HIV DNA polymerase chain reaction. All infants are provided with cotrimoxazole before receiving the results of the HIV test and continue, regardless of the result, since most are breastfeeding. The HIV-positive infants are then referred to the pediatric HIV clinic, which is located in the same hospital complex for continuing care and treatment. Mothers already on HAART offer peer support and encouragement.
We wanted to learn from the integration of PMTCT programs into MCH services in many resource-limited settings how to better design programs to provide linkage of diagnosis within MCH programs to care and treatment services [10–13]. In addition to adequate resources and infrastructure, appropriate staffing, enhanced HIV training within MCH services, and community participation, the cooperation between national and local health authorities is necessary.
Improved reporting with monitoring of the impact of programs on both individual and population outcomes is needed . The ability to knowledgeably track infants depends upon identification and the recording and reporting of visits. Current reporting is incomplete. During the intervals queried, the majority of clinics did not report on the requested outcomes to assess longitudinal care. Reasons for this include: (1) the services in question are inconsistent, intermittent, or not being offered; (2) inadequate resources, time constraints, and lack of trained personnel available for collecting data and/or reporting; (3) services beyond PMTCT are often provided in different locations with separate monitoring and evaluation systems; and (4) confusion exists over reporting requests and collection procedures. These enumerated challenges will be addressed.
PMTCT programs are essential entry points to care for families. The worldwide HIV care and treatment initiative including HAART is expanding . Our data reveal that for the majority of sites, care and treatment services have not been adequately integrated into MCH services with PMTCT. To begin to address this problem as well as to try to improve reporting capacity, we have focused more resources on monitoring and evaluation and have specifically organized a small number of EGPAF staff to develop recommendations for integration and linkages of services. Recognizing that the continuum of care requires a paradigm shift in the developing world and depends on coordination and integration, an understanding of the current obstacles to providing longitudinal care of a mother-infant dyad enables us to improve appropriate HIV prevention and treatment services in resource-limited settings.
We thank the technical staff in our national and international offices for contributing to the information presented in this paper. The authors acknowledge the tireless efforts of the Ministries of Health and our program partners in all 18 countries whose work made this paper possible, as well as the people our programs aim to support.
Sponsorship: EGPAF's international program appreciates the generous financial support of the United States Agency for International Development, the Centers for Disease Control and Prevention, Johnson & Johnson, Boehringer Ingelheim, Jewelers for Children, the Bill and Melinda Gates Foundation, Oprah Winfrey Foundation and Ronald McDonald House Charities.
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