Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter.
Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.
Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.
OCR for page 39
2
Indicators Related to Continuous HIV
Care and Access to Supportive Services
This chapter addresses the committee’s charge to “provide recommen-
dations for the most critical data and indicators to gauge the impact of
the National HIV/AIDS Strategy (NHAS) and the Patient Protection and
Affordable Care Act (ACA) in improving HIV/AIDS care” in the United
States (statement of task). The chapter presents the committee’s choice of
core and additional indicators related to continuous HIV care and access
to supportive services, such as housing, for people living with HIV/AIDS
(PLWHA); the process by which the committee identified and prioritized the
indicators; the committee’s rationale for selecting each indicator; and the
data (elements) needed to measure the indicators. The committee recognizes
the importance of efforts to increase access to HIV testing and the number
of HIV-infected individuals who are aware of their serostatus (IOM, 2010,
2011b,c), as well as the need to reduce the transmission of HIV through
efforts to reduce risk behaviors among all persons. Based on its statement
of task, however, the committee focused its attention on linkage and access
to and provision of appropriate HIV care and related supportive services
for people already diagnosed with HIV/AIDS.1
1 Although the committee did not focus on indicators specifically related to reducing the
transmission of HIV by people in care for HIV (e.g., condom use), some indicators, such as
those related to undetectable viral load, also promote transmission reduction. Preliminary
results from a large HIV Prevention Trials Network randomized clinical trial (HPTN 052)
indicate that early use of antiretroviral therapy (ART) in PLWHA reduces sexual transmission
of HIV to an uninfected partner by 96 percent (Cohen et al., 2011). Likewise, the committee
did specifically address the use of ART to reduce mother-to-child transmission in pregnant
women with HIV as part of the prenatal care provided to HIV-infected pregnant women.
39
OCR for page 40
40 MONITORING HIV CARE IN THE UNITED STATES
The chapter also discusses different types of data relevant to patient
care and their usefulness for evaluating the continuity (and quality) of HIV
care and access to supportive services. The relative merits of each type of
data are discussed, as well as whether the differences among data types
(in particular claims data and clinical data) “encompass gaps in measures
for HIV care” (statement of task question 1b). The chapter ends with the
committee’s conclusions and recommendations for “the most critical data
and indicators for gauging the impact of the National HIV/AIDS Strategy
(ONAP, 2010) and the Patient Protection and Affordable Care Act [P.L.
111-148] in improving HIV/AIDS care.”
INDICATORS OF CLINICAL HIV CARE AND ACCESS TO MENTAL
HEALTH, SUBSTANCE ABUSE, AND SUPPORTIVE SERVICES
The Institute of Medicine (IOM) letter report Leading Health Indica-
tors for Healthy People 2020 (IOM, 2011d, p. 8) defined the term “indica-
tor” as “a measurement” and “leading health indicators” as “quantitative
expressions of health-related concepts that reflect major public health con-
cerns.” For the purposes of the present report, indicators of HIV care
and access to supportive services are defined as quantitative expressions
(measurements) pertaining to the state of HIV care and the availability
of supportive services for PLWHA (and subgroups thereof) in the United
States. “Core indicators” are those indicators deemed by the committee to
be fundamental both to assessing the extent to which persons diagnosed
with HIV are connected to appropriate medical care, are maintained in
care over time, and have access to needed supportive services in the United
States and to gauging the impact of the NHAS and the ACA in improving
HIV/AIDS care.
Indicators may include process measures and outcome measures. Pro-
cess measures pertain to processes of care, such as regular visits for routine
care, lab tests and screening performed, and therapies initiated. Outcome
measures pertain to the actual health outcomes or status of patients. Mor-
tality and morbidity are ultimate outcome measures for tracking access to
quality HIV care for people diagnosed with HIV. Intermediate outcome
measures include CD4+ T-cell counts (CD4 counts) and plasma HIV RNA
levels (viral loads), which reflect disease progression and infectivity. Pro-
cess measures are important indicators of quality of care and treatments
received, which research has shown are directly associated with good clini-
cal outcomes (Kitahata, 1996; Kitahata et al., 2000, 2003; Landon et al.,
2005). For example, regular monitoring of CD4 counts implies good-
quality HIV care, with the expectation of good outcomes.
Indicators often are defined in terms of a percentage, proportion, or
other relative measure and are not synonymous with the data elements
OCR for page 41
41
INDICATORS
necessary to assess them. Multiple data elements may be required to gener-
ate an indicator. For example, “the proportion of PLWHA in the United
States who have a CD4+ cell count above X” is an indicator, while the data
needed to assess that indicator are CD4 counts (specifically the number
of people with a CD4+ cell count above X) and the total number of HIV-
infected individuals in the United States.
Background
A number of important sets of performance measures (Horberg et al.,
2010), health objectives (HHS, 2010), and indicators (PEPFAR, 2009) re-
lated to HIV screening and care have been developed or revised in recent
years. The NHAS also identifies several specific targets, in addition to its
three general goals of “reducing the number of people who become in-
fected with HIV; increasing access to care and optimizing health outcomes
for people living with HIV; and reducing HIV-related health disparities”
(ONAP, 2010, p. 1). These sources provide a basis for the committee’s
development of a set of indicators for measuring HIV care and access to
mental health, substance abuse, and supportive services in the United States
(Appendix Table 2-1).2
HIV Care Quality Measures
Michael Horberg and colleagues (2010) describe the development of a
set of 17 performance measures for HIV care (Table 2-1), most of which
have been endorsed by the National Quality Forum (NQF), a nonprofit or-
ganization that sets national consensus standards on performance in health
care (see NQF, 2011a).
The measures represent a consensus among members of a working
group of experts convened by the National Committee for Quality Assur-
ance, in conjunction with the Health Resources and Services Administration
(HRSA), the Physician Consortium for Performance Improvement of the
American Medical Association, and the HIV Medicine Association of the
Infectious Diseases Society of America. The effort to produce a single set of
2 All indicators considered by the committee are population-aggregated individual measures,
such as the proportion linked to care within 3 months of diagnosis and mortality rate.
The committee recognizes the importance of system-level indicators, such as the structural
dimensions of system comprehensiveness, capacity, integration, and accessibility described
in the Health Resources and Services Administration (HRSA) System Assessment Project
(Conviser, 2007). System-level indicators are important because they are related to getting
diagnosed individuals linked to, engaged in, and retained in care. However, the committee
understood its charge to be recommendations for indicators to measure the quality as well as
the continuity of HIV care received by PLWHA in the United States.
OCR for page 42
42 MONITORING HIV CARE IN THE UNITED STATES
TABLE 2-1 HIV Care Quality Measures
Level of
Care
Impacteda Level of Evidenceb
Measure
Process of care
1. Retention in care (seen at least twice P Level II and QM
annually at least 60 days apart)
2. CD4+ cell count measurement (mea- P Level II and QM
sured at least twice annually)
Screening
3. Gonorrhea/chlamydia screening (at least P Level II
once)
4. Syphilis screening (annually) P Level II and QM
5. Injection drug use screening (annually) P Level II
6. High-risk sexual behavior screening P Level I and QM
(annually)
7. Tuberculosis screening (at least once) P Level I and QM
8. Hepatitis B screening (at least once) P Level III and QM
9. Hepatitis C screening (at least once) P Level III and QM
Immunization
10. Influenza immunization (annually) B Level III
11. Pneumococcal immunization (at least B Level II and QM
once)
12. Hepatitis B vaccination first dose re- P Level II and QM
ceived (if appropriate)
13. Hepatitis B vaccination series completed S Level II and QM
(if appropriate)
Prophylactic therapy
14. PCP prophylaxis if CD4+ cell count B Level I and QM
<200 cells/µL
ART prescription
15. Appropriately prescribed ART P Level I and QM
Viral control (at least 6 months post-ART
initiation)
16. Achieving maximal viral control if S Level II and QM
prescribed ART
17. Achieving maximal viral control if P Level II and QM
prescribed ART or treatment plan
documentation if maximal viral control
not achieved
NOTE: ART, antiretroviral therapy; PCP, Pneumocystis jiroveci pneumonia.
aLevels of care are as follows: P, physician; S, system; B, both.
bLevels of evidence are as follows: I, evidence from ≥1 randomized controlled trial; II, evidence
from ≥1 clinical trial, multiple cohort studies, or multiple times series or dramatic results of
uncontrolled experiments; III, expert opinion only; QM, previous quality measure data indi-
cating gaps in care.
SOURCE: Adapted from Horberg et al., 2010, Table 1.
OCR for page 43
43
INDICATORS
national performance standards for HIV care was precipitated by a prolif-
eration of HIV performance measures developed by different bodies over a
number of years (Horberg et al., 2010)3 and heeds the call from the 2004
IOM report Measuring What Matters: Allocations, Planning, and Quality
Assessment for the Ryan White CARE Act for a standard set of quality
measures that are applicable across the range of delivery systems (IOM,
2004). Most of the performance measures endorsed by NQF are process
measures. Research has shown that patients who receive more routine of-
fice visits; appropriate initiation and prescription of antiretroviral therapy
(ART); and appropriate screenings, prophylaxis, and immunizations have
better outcomes than those who do not (Kitahata, 1996; Kitahata et al.,
2000, 2003; Landon et al., 2005).4 However, other factors (e.g., untreated
non-HIV comorbidities, including mental illness; contextual factors such as
food and/or housing insecurity) can result in poorer outcomes even under
conditions of the most expert care and perfect treatment adherence. For
this reason, outcome measures (e.g., the results of CD4 counts, mortality)
are more definitive markers of successful management of HIV disease, al-
though even with outcome indicators there are numerous factors that can
affect HIV quality care and may not be able to be assessed. In addition,
despite their usefulness, outcome measures generally are more difficult to
obtain than process measures, although the increasing use of electronic
health records (EHRs) has significantly advanced the collection of health
outcomes data.
Taken together, process measures and outcome measures provide a
strong basis for the development of associated HIV care indicators and are
important for assessing the impact of the NHAS and ACA in improving
HIV/AIDS care in the United States. With appropriate care and treatment,
HIV is a chronic disease with long disease progression time. Policies that
improve HIV care may have an immediate impact on some process indica-
tors (such as frequency of CD4 testing), but a delayed impact on certain
outcome indicators (particularly mortality and secondary infections). The
goal of any public health intervention is to improve outcomes, but process
indicators can provide early feedback about whether the policy guiding
3 See, e.g., New York State Department of Health AIDS Institute, HIV Quality of Care
Program, (NYSDHAI, 2011); Veterans Health Administration, HIV-QUERI (Bozzette et al.,
2000); Kaiser Permanente (Horberg et al., 2011); Ryan White Program, HRSA, HIV/AIDS
Bureau, HIVQUAL (HRSA, 2011a,b).
4 Studies such as these suggest that provider experience in caring for PLWHA improves
quality of care and patient outcomes. As the number of individuals with HIV who are in care
continues to increase, and with the evolution of HIV as a chronic condition, there will be a
continued need for HIV care to move away from infectious disease (HIV) specialists toward
nonspecialist primary care providers who have experience in treating HIV patients (IOM,
2011c).
OCR for page 44
44 MONITORING HIV CARE IN THE UNITED STATES
that intervention works. This may be especially important for particular
subpopulations of PLWHA, for whom conditions may moderate the effect
of a given intervention. For example, a particular group might be linked to
care sooner and receive more quality care, but have less change in mortality
(compared to other groups) due to chronic housing and social service needs
or even different sets of HIV-related risk environments or risk clusters.
Process indicators also can provide insights into why a policy is or is
not working. If mortality remains the same despite improvements in certain
areas (e.g., linking people to care, routine CD4 testing, appropriate ART
initiation), the collection of additional process indicators may highlight
other areas that need to be addressed (e.g., screening and immunization
for certain coinfections).
Healthy People 2020 Objectives
Healthy People 2020 is the most recent incarnation of an initiative be-
gun more than 30 years ago to identify data-based objectives for improving
health among Americans (HHS, 2011a). Healthy People 2020 identifies 18
objectives relating to HIV: 14 relate to HIV prevention, testing, and diag-
nosis, and 4 relate to health care, survival, and death following diagnosis
(HHS, 2010). In keeping with the committee’s focus on HIV care following
diagnosis, three of the latter four objectives (HIV.9, HIV.10, and HIV.12),
in addition to one pertaining to mother-to-child transmission (HIV.8),
served as a basis for associated HIV care indicators (see Box 2-1).
PEPFAR Indicators
Indicators developed by the U.S. President’s Emergency Plan for AIDS
Relief (PEPFAR) provided another basis for the indicators recommended
by the committee. Originally authorized by the U.S. Congress in 2003 and
reauthorized in 2008, PEPFAR is an unprecedented federal government
investment to address the HIV/AIDS epidemic around the world. Now a
cornerstone of President Obama’s Global Health Initiative, PEPFAR pro-
vides support for national programs and strategies in more than 85 host
countries to treat adults and children currently living with HIV/AIDS and
to reduce the transmission of HIV (PEPFAR, 2011). PEPFAR has developed
a set of essential reported indicators to gather information for planning,
monitoring, and management purposes (PEPFAR, 2009).
The PEPFAR indicators that pertain to the treatment of PLWHA and
the provision of supportive services, such as food assistance, also provided
a basis for the committee’s development of core indicators related to con-
tinuous care and access to supportive services for PLWHA in the United
States (Box 2-2).
OCR for page 45
45
INDICATORS
BOX 2-1
Healthy People 2020 Summary of Objectives: HIV
Diagnosis of HIV Infection and AIDS
[HIV-1–HIV-7]
HIV-8. Reduce the number of perinatally acquired HIV and AIDS cases
Death, Survival and Medical Healthcare After Diagnosis of HIV Infection
and AIDS
HIV-9. Increase the proportion of new HIV infections diagnosed before progres-
sion to AIDS
HIV-10. Increase the proportion of HIV-infected adolescents and adults who re-
ceive HIV care and treatment consistent with current standards
HIV-11. Increase the proportion of persons surviving more than 3 years after a
diagnosis with AIDS
HIV-12. Reduce deaths from HIV infection
SOURCE: HHS, 2010.
NHAS Goals
As discussed in Chapter 1, the NHAS lists three primary goals: (1)
reduction of HIV transmission; (2) increased access to care and optimized
health outcomes for PLWHA; and (3) reduction of HIV-related health dis-
parities (ONAP, 2010, p. 1). Within these three general goals, the NHAS
identifies a number of specific measurable objectives to be met by 2015. Of
particular interest for the committee’s work are the specific targets pertain-
ing to increased access to HIV care, improved health outcomes, and reduced
HIV-related health disparities.
The NHAS (ONAP, 2010, p. 21) lists three targets regarding increased
access to care:
• Increase the proportion of newly diagnosed patients linked to
clinical care within 3 months of their HIV diagnosis from 65 to 85
percent.
• Increase the proportion of Ryan White HIV/AIDS Program clients
who are in continuous care (at least two visits for routine HIV
OCR for page 46
46 MONITORING HIV CARE IN THE UNITED STATES
medical care in 12 months at least 3 months apart) from 73 to 80
percent.
• Increase the percentage of Ryan White HIV/AIDS Program clients
with permanent housing from 82 to 86 percent. (This serves as a
measurable proxy of [ONAP’s] efforts to expand access to [U.S.]
Department of Housing and Urban Development [HUD] and other
housing supports to all needy people living with HIV.)
Although the NHAS does not specify it explicitly, the text makes clear
that the continuous care target for Ryan White clients serves as a measur-
able proxy of efforts to ensure that all diagnosed HIV-infected persons are
maintained in care (ONAP, 2010, pp. 23-25).
The NHAS (ONAP, 2010, p. 31) also lists three targets in support of
the goal of reducing HIV-related health disparities:
BOX 2-2
PEPFAR Essential Reported Indicators
Prevention
P1.2.D Number of HIV-positive pregnant women who received antiretrovirals to
reduce risk of mother-to-child transmission
Care
C2.1.D Number of HIV-positive adults and children receiving a minimum of one
clinical service
C2.4.D Percentage of HIV-positive patients who were screened for tuberculosis
(TB) in HIV care or treatment settings
C2.5.D Percentage of HIV-positive patients in HIV care or treatment (pre-ART or
ART) who started TB treatment
C5.1.D Number of eligible clients who received food and/or other nutrition services
Treatment
T1.2.D Number of adults and children with advanced HIV infection receiving ART
[current]
SOURCE: Adapted from PEPFAR, 2009, Table 1.
OCR for page 47
47
INDICATORS
• Increase the proportion of HIV-diagnosed gay and bisexual men
with undetectable viral load by 20 percent.
• Increase the proportion of HIV-diagnosed blacks with undetectable
viral load by 20 percent.
• Increase the proportion of HIV-diagnosed Latinos with undetect-
able viral load by 20 percent.
As discussed in more detail later, these six specific strategy targets pro-
vided the basis for several of the indicators recommended by the committee.
Since the issue of continuity of care clearly is not limited to Ryan White
HIV/AIDS Program clients, the continuity-of-care indicator identified by
the committee is directed toward the general population of PLWHA but
can also be applied to Ryan White HIV/AIDS Program clients or any other
subpopulation. The same is true for the indicators relating to permanent
housing and undetectable viral load.
Selection of Indicators of HIV Care and Access to Supportive Services
In addition to the HIV-related performance measures, health objec-
tives, indicators, and NHAS goals discussed in the preceding sections, the
committee’s selection of core indicators “to gauge the impact of the Na-
tional HIV/AIDS Strategy and the Patient Protection and Affordable Care
Act in improving HIV/AIDS care” (statement of task) was informed by
the identification of two overarching goals for the provision of HIV care:
(1) to optimize health outcomes for PLWHA and (2) to reduce the risk of
transmitting the virus to others. These goals of HIV care are best achieved
through full engagement of PLWHA in clinical HIV care, as depicted in
Figures 2-1 and 2-2.
Primary barriers to optimal outcomes for PLWHA include late diag-
nosis, delayed linkage to care, poor retention in care, delayed initiation
of ART, and poor adherence to ART (i.e., discontinuing or intermittent
ART), as well as untreated non-HIV comorbidities and unmet basic needs
(Castilla et al., 2002; Gardner et al., 2011; Justice, 2006; Lo et al., 2002).
Figure 2-3 shows the number of people lost to care at various points along
the care continuum. Identification of benchmarks and points at which di-
agnosed PLWHA are lost along the continuum of engagement in HIV care
from diagnosis to death served as a basis for the committee’s selection of
process and outcome indicators of quality clinical HIV care. Throughout its
deliberations, the committee, in keeping with its charge to recommend in-
dicators that “capture the care experiences of people living with HIV with-
out substantial new investments” and mindful of the need not to increase
reporting burden unduly, sought to balance the numerous facets of quality
HIV care against the need for parsimony in its selection of core indicators;
OCR for page 48
48 MONITORING HIV CARE IN THE UNITED STATES
FIGURE 2-1 Continuum of engagement in care.
SOURCE: Cheever, 2007.
Figure 2-1
Bitmapped--poor quality
Virologic
Testing Diagnosis Primary Care Treatment
Suppression
FIGURE 2-2 Continuum of HIV care arrow.
SOURCE: Adapted from Das, 2011.
hence, the core indicators reflect Figure 2-2 aspects of clinical HIV care,
New more general
while more specific aspects are included in the additional indicators. In ad-
dition, the committee was specifically asked to address indicators related
to access to supportive services, such as housing. Consideration of signifi-
cant mediators of continuous engagement and optimal health outcomes in
HIV care, including receipt of needed mental health and substance abuse
services, homelessness and housing instability, food insecurity, and lack of
transportation needed to access medical and supportive services, informed
the committee’s selection of core and additional indicators in these areas.
A recent series of IOM reports discusses policies, facilitators, and bar-
riers surrounding expanded HIV testing and access to care (IOM, 2010,
2011b,c). The present report focuses on adults who have been diagnosed
with HIV and on indicators pertaining to the provision of HIV care and
supportive services from diagnosis forward. Although the indicators for
clinical HIV care and mental health and substance abuse are targeted to-
ward adults, they apply to adolescents (≥13 years) as well. There are tens
of thousands of new diagnoses annually among the group of individuals
OCR for page 49
49
INDICATORS
1,400,000
100%
1,200,000
100%
Population of People Living with
HIV/AIDS in the United States
1,000,000 80%
79%
1,178,350
800,000 941,950
62%
59%
1,106,400 874,056
600,000 725,302
41%
40%
655,542 36%
400,000
480,395 28%
24% 426,590
437,028 19%
328,475
200,000
262,217 209,773
0
HIV-Infected HIV-Diagnosed Linked to HIV Retained in HIV On ART Suppressed Viral
Load (≤200 copies
Care Care
/mL)
Gardner MMWR
FIGURE 2-3 Engagement in HIV care cascade.
SOURCE: Adapted from CDC, 2011c; Gardner et al., 2011.
13 and older, with the highest rates between the ages of 20 and 49 years
(CDC, 2012, Table 1a).5 In contrast, the use of ART to reduce or prevent
perinatal transmission of the virus has resulted in a relatively small number
of newly diagnosed pediatric HIV cases in the United States each year. In
2008, 218 children under the age of 13 were diagnosed with HIV; by 2010,
the number had dropped to 185 (CDC, 2012, Table 1a).
Although some of the indicators, such as screening for sexually trans-
mitted infections (STIs) and mental health and substance use disorders,
generally do not apply to children under the age of 13, others, such as
mortality rate, apply equally to all ages; indicators that reflect treatment
guidelines apply to children as well, once they are adapted to reflect pedi-
atric guidelines for HIV care (HHS, 2011e).
The indicators crafted by the committee reflect the current science and
guidelines for the practice of HIV care at the time of writing. Although
the specific details of the indicators (e.g., threshold CD4+ cell counts) may
evolve over time as the science and practice of HIV care changes, the prin-
5 Although there is a low rate of new HIV diagnoses among 13- to 14-year-olds (CDC, 2012,
Table 1a), adolescents 13 and older fall within the same treatment guidelines as adults (HHS,
2011d) and therefore are included in the group. In addition, the current Centers for Disease
Control and Prevention HIV screening guidelines also focus on individuals age 13 and older
(Branson et al., 2006).
OCR for page 116
APPENDIX TABLE 2-1 Continued
116
Indicator Data Elements Needed Proxy/Alternative Data Elements Rationale
Proportion of people with Yes/no documentation of influenza HIV-infected individuals are
D
• ate of influenza immunization
diagnosed HIV infection who immunization within reporting considered to be at greater risk
have received an influenza period can be used if specific date for serious influenza-related
immunization during the of influenza immunization is not complications. CDC recommends
preceding 12 months available. annual prophylactic vaccination
(inactive) for influenza.
Proportion of people with Yes/no documentation of HIV-infected individuals are
D
• ate of HIV diagnosis/treatment
diagnosed HIV infection who pneumococcal immunization considered to be at greater risk for
or documentation of infection
have received a pneumococcal in medical record or yes/no contracting and developing serious
prior to immunization
immunization at least once documentation of pneumococcal complications from pneumococcal
D
• ate of pneumococcal
since HIV diagnosis immunization within reporting pneumonia. CDC recommends
immunization
period can be used if specific prophylactic vaccination as soon as
dates of HIV diagnosis and possible following diagnosis, followed
pneumococcal immunization are by a one-time revaccination 5 years
not available. later.
Proportion of people with Yes/no documentation of hepatitis HIV and hepatitis B coinfection is
D
• ate of hepatitis vaccine/date of
diagnosed HIV infection who B vaccination or documented associated with accelerated liver
documented immunity
have received a hepatitis B immunity can be used if specific damage and the development of
vaccination, or who have dates of HIV diagnosis and chronic hepatitis and serious liver-
documented immunity hepatitis B vaccination are not related morbidity and mortality. CDC
available. recommends prophylactic vaccination
against hepatitis B for susceptible
individuals with HIV.
OCR for page 117
Proportion of ART-naïve Documentation of drug resistance Drug resistance testing prior to
D
• ate of drug resistance testing
people with diagnosed HIV testing for persons receiving the initiation of ART permits the
D
• ate of ART initiation
infection who receive drug ART can be used if dates of drug identification of the appropriate
resistance testing (genotypic) resistance testing and/or ART treatment regimen and therefore
prior to ART initiation initiation are not available. improves health outcomes and
reduces viral transmission.
Proportion of people with Number of people with any of HHS recommends that HIV-infected
D
• iagnosis or test results for HIV-
diagnosed HIV infection and these conditions who are not on individuals with HIV-associated
associated nephropathy, hepatitis
HIV-associated nephropathy, ART can be used if information nephropathy, hepatitis B virus
B, and TB
hepatitis B (when treatment is about all three conditions is not coinfection (when treatment is
A
• RT status (whether on ART
indicted), or active TB, who available. indicated), or active TB receive ART
or ART prescription/dispensing
are not on ART* to improve health outcomes.
dates)
Proportion of pregnant Number of births during reporting Use of combination ART in HIV-
P
• regnancy status
women with diagnosed HIV period to women not on ART can positive pregnant women significantly
A
• RT status (whether on ART
infection who are not on be used if complete information reduces mother-to-child transmission
or ART prescription/dispensing
ART* about pregnancy status is not of the virus.
dates)
available.
Additional Indicators for Mental Health, Substance Abuse, and Supportive Services
Indicator Data Elements Needed Proxy/Alternative Data Elements Rationale
Proportion of people with Yes/no evidence of screening for Undiagnosed, and therefore
D
• ate of mental health screening
diagnosed HIV infection who mental health disorders or referral untreated, mental health disorders
were screened for mental for treatment during reporting can negatively affect adherence to
health disorders at least once period can be used if dates of treatment and health outcomes for
during the preceding 12 mental health screening are not PLWHA and increase their risk of
months available. transmitting the virus to others.
*In contrast to the other indicators, the estimate for this indicator should decrease with improved access to care and supportive services.
continued
117
OCR for page 118
APPENDIX TABLE 2-1 Continued
118
Indicator Data Elements Needed Proxy/Alternative Data Elements Rationale
Proportion of people with Yes/no evidence of screening for Undiagnosed, and therefore
D
• ate of screening for substance
diagnosed HIV infection who substance use disorders or referral untreated, substance use disorders
use
were screened for substance for treatment during reporting can negatively affect adherence to
use disorders at least once period can be used if dates of treatment and health outcomes for
during the preceding 12 substance use screening are not PLWHA and increase the risk of
months available. transmitting the virus to others.
Proportion of people with Yes/no evidence of housing Assessment of housing stability is
D
• ate of housing needs
diagnosed HIV infection who assessment or referral for housing important because housing instability
assessment
were assessed for need for assistance during reporting period can negatively affect adherence to
housing at least once during can be used if dates of housing treatment and health outcomes for
the preceding 12 months assessment are not available. PLWHA and increase the risk of
transmitting the virus to others.
Proportion of people with Yes/no evidence of food security Assessment of food security is
D
• ate of food security assessment
diagnosed HIV infection assessment or referral for food or important because food insecurity
who were assessed for need meal assistance during reporting can negatively affect adherence to
for food or nutrition at least period can be used if specific dates treatment; effectiveness of treatment,
once during the preceding 12 of assessment are not available. including ART; and health outcomes
months for PLWHA and increase the risk of
transmitting the virus to others.
Proportion of people with Yes/no evidence of assessment for Assessment of transportation need
D
• ate of transportation needs
diagnosed HIV infection transportation need or referral is important because an unmet need
assessment
who were assessed for need for transportation services during for transportation to access clinical
for transportation at least reporting period can be used if HIV care and related services can
once during the preceding 12 specific dates of assessment are negatively affect treatment access and
months not available. health outcomes for PLWHA and
increase the risk of transmitting the
virus to others.
OCR for page 119
119
APPENDIX TABLE 2-2 follows on next page
OCR for page 120
120
APPENDIX TABLE 2-2 Indicators of Clinical HIV Care and Mental
Health, Substance Abuse, and Supportive Services, Mapped to Entry and
Engagement in Care
Engagement &
Diagnosis Linkage Retention Primary Care
Indicators and Type (Process/Outcome)
• rocess/
P • rocess
P • rocess/
P • rocess
P
Outcome Outcome
• roportion
P • roportion
P • roportion in
P In the preceding 12
with a CD4+ linked to care continuous months:
cell count >200 for HIV within care (two or • roportion who
P
cells/mm3 3 months of more visits in received two or
and without diagnosis the preceding more CD4 tests
a clinical 12 months at
diagnosis of least 3 months • roportion who
P
AIDS apart) received two or
more viral load
• roportion in
P tests
continuous
care for 12 or • roportion
P
more months screened for
with CD4+ cell chlamydia,
count ≥350 gonorrhea, and
cells/mm3 syphilis
• roportion
P
screened for
hepatitis C
• roportion
P
immunized for
influenza
Since diagnosis:
• roportion
P
screened for
tuberculosis
• roportion
P
screened for
hepatitis B
• roportion
P
immunized for
hepatitis B (if
needed)
• roportion
P
immunized for
pneumococcal
pneumonia
• roportion who
P
received drug
resistance testing
(genotypic) prior
to ART initiation
NOTE: The committee’s recommended core indicators are written in bold text.
OCR for page 121
121
Virologic
Treatment Suppression Mediators Disparities
• rocess
P • utcome
O • rocess/Outcome
P • rocess/Outcome
P
• roportion with a •
P P
roportion on ART • roportion with
P • ll indicators
A
measured CD4+ cell for 12 or more mental health related to
count <500 cells/ months who have disorder referred diagnosis, linkage,
mm3 who are not an undetectable for mental health engagement and
on ART viral load services who retention, primary
received these care, treatment,
• ll-cause mortality
A services within 60
• roportion with
P and virologic
rate days
HIV-associated suppression,
nephropathy, stratified by
• roportion with
P
hepatitis B (when subpopulation
substance use
treatment is
disorder referred
indicated), or active • ll mediators,
A
for substance abuse
tuberculosis who stratified by
services who receive subpopulation
are not on ART
these services within
60 days
• roportion of HIV-
P
infected pregnant
• roportion with an
P
women who are not
unmet need for
on ART
• housing
• food
• transportation
In the preceding 12
months:
• roportion screened
P
for mental health
disorders
• roportion screened
P
for substance use
disorders
• roportion assessed
P
for need for
• housing
• food
• transportation
continued
OCR for page 122
122
APPENDIX TABLE 2-2 Continued
Engagement &
Diagnosis Linkage Retention Primary Care
Data Elements
• ate of HIV
D • ate of HIV
D • ates of
D • ates of CD4
D
diagnosis diagnosis routine HIV- tests
care visits
• D4 test
C • ate of first
D • ates of viral
D
results at visit for • ates of CD4
D load tests
diagnosis/first HIV care (or tests
visit for HIV proxy of first • ate of HIV
D
care or second • esults of at
R diagnosis/
CD4 or viral least one CD4 treatment or
• iagnosis of
D load test date) test within documentation
AIDS or AIDS- time period of infection
defining illness specified
(e.g., OIs) • ates of
D
chlamydia,
gonorrhea,
and syphilis
screenings
• ate of hepatitis
D
C screening
• ate and results
D
of tuberculosis
screening
• ate hepatitis B
D
screening or date
of documented
immunity
• ate of influenza
D
immunization
• ate of
D
pneumococcal
immunization
• ate of hepatitis
D
vaccine/date
of documented
immunity
• ate of drug
D
resistance testing
• ate of ART
D
initiation
OCR for page 123
123
Virologic
Treatment Suppression Mediators Disparities
• ates of CD4
D • ates of ART
D • ate of diagnosis
D • ll data elements
A
tests prescription or or evidence of for indicators and
dispensing mental health mediators
• esults of CD4
R disorder
tests • ates of viral
D • dditional data
A
load tests • ate of referral
D elements pertaining
• ates of ART
D for mental health to subpopulations:
prescription or • esults of viral
R services • Race
dispensing load tests • Ethnicity
• ate of first visit
D • Sex
• iagnosis or
D • ate of death
D for mental health • Gender identity
test results for services • Sexual orientation
HIV-associated • Date of birth
nephropathy, • ate of diagnosis
D • Zip code/other
hepatitis B, and or evidence of geographic marker
tuberculosis substance use
disorder
• regnancy status
P
• ate of referral
D
for substance
abuse services
• ate of first visit
D
for substance
abuse services
• ousing status
H
• ood security
F
status
• ransportation
T
need
• ate of mental
D
health screening
• ates of
D
screening for
substance use
• ates of
D
housing, food
security, and
transportation
needs assessment
OCR for page 124
124 MONITORING HIV CARE IN THE UNITED STATES
APPENDIX TABLE 2-3 Co-Occurring Conditions and Etiological
Cofactors with Link to Guidance for Optimal Management
Condition Etiological Cofactors Guidance for Optimal Management
Cervical/anal Human • Guidelines for Prevention and Treatment
dysplasia papillomavirus of Opportunistic Infections in HIV-
(HPV); HIV* Infected Adults and Adolescents (http://
www.aidsinfo.nih.gov/contentfiles/
Adult_OI.pdf)
Chronic obstructive Cigarette smoking • Chronic obstructive pulmonary disease
pulmonary disease and HIV (http://www.hiv.va.gov/provider/
manual-primary-care/copd.asp)
HIV*; highly active
Diabetes • Clinical Practice Recommendations
antiretroviral therapy (http://care.diabetesjournals.org/
(HAART)*; diet; content/31/Supplement_1.toc)
genetics; exercise
Hepatoma Hepatitis B virus; • European AIDS Clinical Society (EACS)
hepatitis C virus Guidelines for the Clinical Management
and Treatment of Chronic Hepatitis
B and C Coinfection in HIV Infected
Adults (http://onlinelibrary.wiley.com/
doi/10.1111/j.1468-1293.2007.00535.x/
pdf)
• EASL Clinical Practice Guidelines:
Management of Chronic Hepatitis B
(http://www.easl.eu/assets/application/
files/b73c0da3c52fa1d_file.pdf)
• Care of Patients with Chronic Hepatitis B
and HIV Co-Infection: Recommendations
from an HIV-HBV International Panel
(www.hem-aids.ru/system/files/
attachments/1659/aids_aids_pdf_183.pdf)
Hyperlipidemia HIV; HAART; diet; • Third Report of the Expert Panel on
genetics; exercise Detection, Evaluation, and Treatment of
High Blood Cholesterol in Adults (ATP
III Final Report) (http://www.nhlbi.nih.
gov/guidelines/cholesterol/atp3_rpt.htm)
• Guidelines for the Evaluation and
Management of Dyslipidemia in Human
Immunodeficiency Virus (HIV)-Infected
Adults Receiving Antiretroviral Therapy:
Recommendations of the HIV Medicine
Association of the Infectious Diseases
Society of America and the Adult
AIDS Clinical Trials Group (http://cid.
oxfordjournals.org/content/37/5/613.full)
OCR for page 125
125
INDICATORS
APPENDIX TABLE 2-3 Continued
Condition Etiological Cofactors Guidance for Optimal Management
HIV*; HAART*,**;
Osteoporosis • Primary Care Guidelines for the
lack of sun exposure; Management of Persons Infected with
genetics; diet; Human Immunodeficiency Virus: 2009
substance use Update by the HIV Medicine Association
of the Infectious Diseases Society of
America (http://cid.oxfordjournals.org/
content/49/5/651.full)
Renal disease Hypertension; • Guidelines for the Management of
HAART**; HIV Chronic Kidney Disease in HIV-Infected
Patients (http://cid.oxfordjournals.org/
content/40/11/1559.full)
Hypogonadism Advanced HIV • Primary Care Guidelines for the
disease Management of Persons Infected with
Human Immunodeficiency Virus: 2009
Update by the HIV Medicine Association
of the Infectious Diseases Society of
America (http://cid.oxfordjournals.org/
content/49/5/651.full)
Hepatitis Chronic hepatitis B • Primary Care Guidelines for the
or C; antiretroviral Management of Persons Infected with
hepatotoxicity Human Immunodeficiency Virus: 2009
Update by the HIV Medicine Association
of the Infectious Diseases Society of
America (http://cid.oxfordjournals.org/
content/49/5/651.full)
• European AIDS Clinical Society (EACS)
Guidelines for the Management and
Treatment of Chronic Hepatitis B
and C Coinfection in HIV-Infected
Adults (http://onlinelibrary.wiley.com/
doi/10.1111/j.1468-1293.2007.00535.x/
pdf)
Sexually transmitted Syphilis; gonorrhea; • Sexually Transmitted Diseases Treatment
infections chlamydia; herpes Guidelines, 2010 (http://www.cdc.gov/
simplex; enteric std/treatment/2010/STD-Treatment-
infections (via fecal 2010-RR5912.pdf)
contact)
Tuberculosis and HIV-associated • Guidelines for Prevention and Treatment
other opportunistic immunodeficiency of Opportunistic Infections in HIV-
infections Infected Adults and Adolescents (http://
www.aidsinfo.nih.gov/contentfiles/
Adult_OI.pdf)
continued
OCR for page 126
126 MONITORING HIV CARE IN THE UNITED STATES
APPENDIX TABLE 2-3 Continued
Condition Etiological Cofactors Guidance for Optimal Management
Mental health Anxiety, depression, • HIV and Mental Health (http://www.
disorders post-traumatic stress; hivguidelines.org/clinical-guidelines/
stigma; discrimination hiv-and-mental-health/)
• Mental Health Disorders Among
Substance-Using HIV-Infected Patients
(http://www.hivguidelines.org/clinical-
guidelines/hiv-and-substance-use/
mental-health-disorders-among-
substance-using-hiv-infected-patients/)
Substance use Anxiety, depression, • HIV and Substance Use (http://www.
disorders post-traumatic stress; hivguidelines.org/clinical-guidelines/
stigma; discrimination hiv-and-substance-use/)
• Mental Health Disorders Among
Substance-Using HIV-Infected Patients
(http://www.hivguidelines.org/clinical-
guidelines/hiv-and-substance-use/
mental-health-disorders-among-
substance-using-hiv-infected-patients/)
Oral health Candida; oral hairy • HIV and Oral Health
leukoplakia; herpes (http://www.hivguidelines.org/
simplex clinical-guidelines/hiv-and-oral-health/)
* Connection between condition and cofactor not proven.
** Tenofovir most commonly associated with this finding.
