PEDIATRICS Vol. 101 No. 2 February 1998, pp. 315-319
AMERICAN ACADEMY OF PEDIATRICS:
Surveillance of Pediatric HIV Infection
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ABSTRACT |
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Pediatric human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) surveillance should expand to include perinatal HIV exposure and HIV infection as well as AIDS to delineate completely the extent and impact of HIV infection on children and families, accurately assess the resources necessary to provide services to this population, evaluate the efficacy of public health recommendations, and determine any potential long-term consequences of interventions to prevent perinatal transmission to children ultimately determined to be uninfected as well as for those who become infected. Ensuring the confidentiality of information collected in the process of surveillance is critical. In addition, expansion of surveillance must not compromise the established, ongoing surveillance system for pediatric AIDS. An expanded pediatric HIV surveillance program provides an important counterpart to existing American Academy of Pediatrics and American College of Obstetricians and Gynecologists recommendations for HIV counseling and testing in the prenatal setting.
Committee on Pediatric AIDS
The goals of surveillance for pediatric human
immunodeficiency virus (HIV) infection and acquired immunodeficiency
syndrome (AIDS) are to 1) determine the scope of the pediatric HIV
epidemic and collect data on trends in the incidence of pediatric
infection, 2) characterize the spectrum of disease and modes of
transmission, 3) assess when children are identified in the course of
their disease so that linkage with needed medical and social services can be improved, 4) project the course of the epidemic to provide needed resources, 5) evaluate the impact of public health
recommendations and programs, and 6) facilitate evaluation of the
impact of in utero exposure to therapies to reduce perinatal
transmission on the long-term outcome of HIV-infected and uninfected
children.
The Centers for Disease Control and Prevention (CDC), in conjunction
with the Council of State and Territorial Epidemiologists (CSTE), has
proposed expanding national surveillance for pediatric HIV infection by
adding standardized, confidential reporting of HIV infection in
children to the current reporting system for pediatric
AIDS.1 In 1989 and 1993, the CSTE recommended that all
states conduct surveillance for HIV infection in children by
instituting uniform reporting requirements under policies that maintain
confidentiality and security of HIV/AIDS surveillance data. In 1995, the CSTE recommended adding pediatric HIV infection to the national
public health surveillance system, and since January 1996, data on
reported cases of pediatric HIV infection have been provided in
Morbidity and Mortality Weekly Report.
Currently, >50% of states conduct confidential surveillance of HIV
infection in children. Most of these states also conduct surveillance
for perinatal HIV exposure (reporting of HIV antibody positivity).
State and local health departments then follow up these cases to
determine the child's ultimate infection status and progression to
AIDS. The pediatric HIV/AIDS case report form currently allows for
reporting at multiple time points for children (ie, at perinatal
exposure, HIV infection determination, AIDS diagnosis, and death).
This statement reviews the purposes of the HIV/AIDS surveillance system
and discusses the advantages and limitations to the public and to
individual children and families of expanding HIV surveillance for
children, and recommends the level of surveillance appropriate at this
time.
A public health surveillance system should provide ongoing,
systematic collection, analysis, evaluation, and dissemination of data
describing and monitoring important public health events. These data
are used to determine the need for public health interventions and to
plan, implement, and evaluate resulting programs and actions. Surveillance systems should be simple and acceptable to those reporting
the health event. The majority of cases under surveillance should be
detectable in a timely manner and therefore should represent the
occurrence of the health event over time and its distribution in the
population.2
The CDC and state and local health departments have conducted
surveillance for AIDS in children and adults since 1981. Such surveillance has provided essential data for characterizing the AIDS
epidemic, evaluating trends in opportunistic infections such as
Pneumocystis carinii pneumonia (PCP), allocating resources for prevention and treatment, and projecting the future impact of
disease. The characterization of AIDS is empiric and captures only
patients with severely symptomatic HIV infection and therefore detects
only a portion of the population infected. Reporting limited to AIDS
patients severely underestimates resource needs for the increasing
population of HIV-infected and HIV-exposed children.
It is important to distinguish between testing of an individual
and surveillance for infection or disease. HIV testing of pregnant
women or their newborns that is linked to patient identifiers is
performed for clinical care and should be conducted only with consent.
The purpose of named HIV testing is to engage a woman in continuing
care for herself and her infant. Compliance with medical care is likely
to be greatest when the woman feels she has made an informed judgment
regarding HIV testing for herself or her infant. The AAP and American
College of Obstetricians and Gynecologists (ACOG) recommend that all
pregnant women receive HIV education and counseling as part of regular
prenatal care. Additionally, it is recommended strongly that HIV
testing be performed in all pregnant women with their consent, with
documentation in the event of refusal of testing.3,4
HIV testing under such conditions provides direct benefit to the woman
and child.
Surveillance usually has indirect benefits to the individual through
general improvement in the public health. The surveillance process
occurs independently of the individual patient, and is accomplished by
reporting of selected conditions detected by the health care provider,
along with identifiers, to local and state health departments. In
recommending that any condition be deemed reportable to public health
agencies, it is important to weigh the public health benefits of
surveillance, the extent of provisions for confidentiality and security
of the information reported on individuals, and how acceptable
reporting is to providers.
Early in the HIV epidemic, surveillance was limited to end-stage
disease, AIDS, because an agreed-on syndrome was defined for which no
diagnostic test existed and the etiology was not known. Even when
diagnosis of HIV infection became possible by serologic testing,
interventions were not yet identified that could change the course of
the disease. Initial reports of pediatric HIV infection indicated that
AIDS progressed rapidly in most HIV-infected children; the epidemic was
newly recognized, and only symptomatic disease, primarily in young
children, was appreciated. It was expected, therefore, that
surveillance for AIDS would provide a good surrogate for evaluating the
magnitude of HIV infection in children.
As it became possible to make a definitive diagnosis of infection in
the absence of symptoms, it was discovered that not all children with
HIV infection die in the first several years of life. Current natural
history studies clearly document a bimodal age distribution for the
survival of children with pediatric HIV infection. The median age at
onset of HIV-related symptoms is 14 months, but the rapid progression
to AIDS during the first year of age occurs in only 10% to 30% of
perinatally infected infants. Most children infected do not develop
AIDS until a median age of 4 to 6 years or older,5-8
and a significant minority of infected children may survive beyond the
age of 8 to 9 years without developing AIDS. 9-11
Substantial medical and social service resources are needed for the
care of children who are exposed to and infected with HIV. The CDC
estimates that 12 240 HIV-infected children were living in the United
States at the end of 1993, only 22% of whom had developed
AIDS.12 On an annual basis since then, an estimated additional 6500 infants have been born to HIV-infected women, 1630 of
whom, in the absence of intervention, were infected each year based on
an estimated 25% vertical transmission rate. Use of zidovudine during
pregnancy and labor and in the neonatal period theoretically could
lower the number of infected children born annually to 520, and this is
recommended by the US Public Health Service (PHS) and the
AAP.13-16 However, health care resources are still
required for the larger group of HIV-exposed infants for monitoring
during the initial 6 weeks of zidovudine prophylaxis, initiation of
prophylaxis to prevent PCP as per the current PHS recommendations,17 and diagnostic testing during the first
6 months of age to determine infection status. Additionally, all children with in utero exposure to antiretroviral drugs require follow-up for any long-term consequences of such
exposure.16
In recent years, various technologic and medical advances have been
made in the detection and treatment of pediatric HIV infection. Current
tests permit HIV infection to be diagnosed in nearly all perinatally
infected infants no later than age 6 months,18,19 and most
such infants have positive virologic tests by 1 month of age. Early
intervention with prophylaxis for PCP17 has been shown to
decrease the occurrence of this infection significantly and reduce
early death.20 There have been important changes in the
recommendations for prophylaxis against PCP in children. Prophylaxis
should start in all infants born to HIV-positive women at 4 to 6 weeks
of age (which may be before infant HIV infection status has been
determined definitively), and should be discontinued in children
subsequently found to be uninfected continued in all HIV-infected
children through at least the first year of age regardless of the
CD4+ lymphocyte count.17 Antiretroviral therapy
has prolonged life and, with other supportive therapeutic modalities,
modified the course of disease.21-24
Finally, the results of AIDS Clinical Trials Group Protocol 076 indicate that a regimen of zidovudine given during pregnancy, labor,
and delivery and to the newborn can reduce the risk of perinatal HIV
transmission by two thirds.13 These findings have led to
PHS recommendations regarding use of zidovudine to reduce perinatal
transmission15,16 and for HIV counseling and voluntary testing of all pregnant women in the United States.3,25
With the availability of specific interventions for the prevention and
treatment of HIV infection and the complications associated with
infection, surveillance for AIDS alone is less useful for projecting
resource needs and planning intervention programs.
HIV infection in children usually is indicative of HIV infection in a
family unit. Regardless of the symptom status of the child,
considerable health and social service resources are necessary to meet
the needs of such families. Therefore, data on the numbers of children
born to HIV-infected women and of HIV infection in children would have
great usefulness.
Surveillance of HIV-Infected and HIV-Exposed Infants
When contemplating nationwide expansion of pediatric HIV
surveillance, it is important to consider whether reporting should include children who have been exposed to HIV, as well as those known
to be infected. Children born to HIV-infected mothers may require
evaluation for up to 18 months to determine definitively whether the
child is uninfected. Continuing medical monitoring is necessary in such
children, and appropriate clinical management dictates that certain
interventions (eg, PCP prophylaxis) be initiated pending diagnostic
evaluation. Therefore, to delineate fully the impact of HIV infection
in children and estimate the medical and social service resources
necessary for their care, reporting would optimally include infants of
indeterminate status as well as those who are infected. Such data help
evaluate the implementation and effectiveness of interventions to
reduce perinatal transmission and of recommendations for prophylaxis
against PCP. The ability to evaluate the potential long-term impact of
such regimens on uninfected as well as HIV-infected children would be
facilitated.
There are potential benefits for the mother (as well as other siblings
and family members) of reporting of perinatal HIV exposure and/or
pediatric HIV infection. The health department, the pediatric health
care provider, and the maternal health care provider can work together
to refer the mother to medical and social services for her own care,
including appropriate counseling regarding HIV and its transmission,
immunologic monitoring, antiretroviral treatment, prophylaxis for
opportunistic infections, and evaluation of other family members for
HIV infection.
Early treatment should be available to mothers and children. This will
require enhancement of ambulatory specialized care in inner-city and
rural areas and financial resources at local, state, and national
levels to meet this obligation. Surveillance data are needed for
determining resource allocation. The impact of HIV infection on
children and the resultant health care requirements can be accurately
determined by a surveillance system that includes reporting of children
with perinatal HIV exposure as well as those with definite HIV
infection and AIDS. Such data are critical to enable the most complete
and reliable appraisal of current and future resource needs.
Many states have already implemented systems for surveillance of
HIV-exposed infants. State and local health departments have provided
information to the health care providers who report the information on
their patients about referrals to available health care and social
service resources for the patient and his/her family
members.26 It also has helped to evaluate the
implementation of public health recommendations. Additional information
from these states will be important to evaluate the usefulness of
surveillance of HIV-exposed children.
Important considerations in surveillance for HIV exposure include
concerns about confidentiality, particularly for the majority of
infants who will be found to be uninfected. The benefits and limitations of maintaining identifiers of such uninfected children in
the surveillance system need careful consideration.
Confidentiality Concerns
The confidentiality of HIV/AIDS case reports is critical in
HIV/AIDS surveillance. The CDC and state health departments have policies and procedures to maintain security and confidentiality of
disease surveillance records, and most states have additional specific
confidentiality laws for patient-related HIV data. At the federal
level, no patient names are collected and surveillance records are
protected by assurance of confidentiality that prohibits the
unauthorized disclosure of individual identifying information. Names
are removed from patient records and unique coded identifiers are
assigned, and the encrypted data are transmitted to the CDC. Federal
funding for HIV/AIDS surveillance to state and local health departments
is contingent on the ability of the health department to ensure the
security and confidentiality of personal identifying information
collected as part of surveillance activities.
The reporting of named identifiers to the state or local health
department ensures that health departments can eliminate duplicate reports, provide referrals to services, and conduct follow-up to
monitor the occurrence of severe illness and death. The state also can
evaluate completeness of reporting by matching AIDS case registries
with birth and death registries or hospital discharge records, and
investigate cases of epidemiologic importance, such as those with no
identified risk or unusual laboratory and clinical characteristics.
Although there are clear benefits to named reporting, a concern that it
might deter individuals from undergoing HIV testing has been raised.
However, a study that evaluated the impact of state reporting policies
on personal plans to seek HIV testing found no evidence that such
name-reporting was related to a decrease in the numbers of people
reporting previous and planned HIV testing.27 In
addition, such reporting has assisted in providing public health services to newly diagnosed HIV-infected persons and in attracting increased funding for outpatient care and support
services.28
Specific confidentiality provisions are in place to prevent disclosure
of surveillance data identifiers to outside parties in all states.
However, individual states maintain the authority to legislate
disclosure when deemed important for public health purposes. For
example, two state legislatures have issued statutes containing
confidentiality provisions, but that require notification of selected
parties by the health department regarding reported cases of pediatric
HIV infection or AIDS. Statutes in Illinois and South Carolina require
that health department officials give notice of the identity of a
reported HIV-infected child to the principal of the school in which the
child is enrolled (in South Carolina, this applies only to public
schools). Legislation requiring that school officials be notified of a
child's HIV infection status is not consistent with published policies
of a number of medical, educational, and public health organizations,
including the AAP29 and the PHS.30 These
policies evolve from the beliefs that notification of school officials
by state or local public health agencies without the knowledge of the
family is not consistent with the interests of children or their
families, and compromises the rights of families to inform or not
inform the schools.
Impact on Mothers and Families Identified Through Pediatric
HIV/AIDS Reporting
All infants with perinatal exposure to HIV have HIV-infected
mothers, and reporting of HIV exposure or infection in infants constitutes indirect knowledge of maternal serostatus. It has been
speculated that some women might be deterred from having their infants
evaluated for HIV for fear of identification of their status and
potential social stigmatization. However, this has not been
substantiated, and the knowledge that a regimen of zidovudine can
reduce significantly the risk of perinatal HIV transmission has
provided a strong impetus for pregnant women to learn their HIV
infection status early in pregnancy.
Seroprevalence Surveys
Serologic testing of blood specimens that are not linked to
individual patient identifiers for the purposes of surveillance has
provided important information regarding the extent of the HIV
epidemic. In pediatrics, because the presence of HIV antibody in the
newborn reflects the infection status of the child's mother, the
unlinked testing of neonatal filter paper blood specimens for HIV
antibody has provided information regarding the distribution and
prevalence of HIV infection in childbearing women. The population-based National HIV Survey in Childbearing Women, which was suspended by the
PHS in May 1995, was used to examine HIV infection trends among women
and children and to identify geographic areas in greatest need of
prevention and treatment resources. Data from this survey, for example,
demonstrated an increase in HIV infection among childbearing women in
rural areas of the southeastern United States and was used to target
and obtain funding for epidemiologic studies and prevention/service
programs for these areas.31
With recommendations that PCP prophylaxis begin at 4 to 6 weeks of age
and the discovery that zidovudine given to pregnant women and their
infants can reduce significantly the risk of perinatal transmission, a
few states have instituted or are considering legislation to require
mandatory HIV testing of all newborns, with subsequent identification
and informing of seropositive mothers. However, it is critical to
recognize that testing of newborn blood specimens does not identify
infected mothers early enough to permit initiation of zidovudine
therapy during pregnancy to reduce perinatal transmission and therefore
prevent HIV infection in children. Recognizing this, rather than
mandating newborn HIV testing, a few states have passed legislation to
require routine prenatal HIV education and HIV testing for all pregnant
women, an approach more likely to reduce perinatal HIV infection.
The conduct of the serosurvey of childbearing women is important to
evaluate trends in HIV infection in childbearing women and project
resource needs. In conjunction with surveillance of HIV exposure, such
a serosurvey permits evaluation of counseling and testing
recommendations and validation of the efficacy of the surveillance
system.32 The PHS, AAP, and ACOG recommend that all women
receive HIV education and counseling as part of their regular prenatal
care. Additionally, it is strongly recommended that HIV testing be
performed in all pregnant women with their consent, with documentation
in the event of refusal of testing.3,4,25 In areas in which
pregnant women have been provided the opportunity to gain knowledge of
their HIV serostatus, concerns about the conduct of an unlinked
serosurvey would be diminished. Therefore, the AAP supports
reinstitution of the serosurvey in areas in which the PHS, ACOG, and
AAP recommendations for HIV counseling and testing in the prenatal
setting have been implemented.
The AAP believes that there would be significant benefits to
expanding surveillance for pediatric HIV infection nationwide through
the addition of confidential reporting of perinatal HIV exposure and
HIV infection in children to the ongoing surveillance of AIDS. However,
confidentiality is crucial, and such information must be safeguarded
and protected from unwarranted disclosures.
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INTRODUCTION
Top
Abstract
Introduction
Background
Conclusion
Recommendation
References
![]()
BACKGROUND
Top
Abstract
Introduction
Background
Conclusion
Recommendation
References
![]()
PURPOSE OF SURVEILLANCE
![]()
DISTINGUISHING BETWEEN INDIVIDUAL TESTING AND INFECTION
SURVEILLANCE
![]()
RATIONALE FOR PEDIATRIC HIV INFECTION SURVEILLANCE
![]()
IMPORTANT CONSIDERATIONS REGARDING PEDIATRIC HIV
SURVEILLANCE
![]()
CONCLUSION
Top
Abstract
Introduction
Background
Conclusion
Recommendation
References
![]()
RECOMMENDATIONS
Top
Abstract
Introduction
Background
Conclusion
Recommendation
References
Committee on Pediatric AIDS, 1996 to 1997
Catherine Wilfert, MD, Chair
Donna T. Beck, MD
Alan R. Fleischman, MD
Lynne M. Mofenson, MD
Robert H. Pantell, MD
S. Kenneth Schonberg, MD
Gwendolyn B. Scott, MD
Martin W. Sklaire, MD
Patricia N. Whitley-Williams, MD
Liaison Representative
Martha F. Rogers, MD
Centers for Disease Control and Prevention
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FOOTNOTES |
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The recommendations in this statement do not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate.
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Pediatrics (ISSN 0031 4005). Copyright ©1998 by the American Academy of Pediatrics
Statement of reaffirmation:
- AAP Publications Retired and Reaffirmed
Pediatrics 117: 1846-1847.[Full Text]
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