Monitoring HIV Care in the United States A Strategy for Generating National Estimates of HIV Care and Coverage (2012) / Chapter Skim
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1 Introduction
1 Introduction
Pages 11-52
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From page 11... ...
In response to this charge, the IOM convened the 17-member Committee to Review Data Systems for Monitoring HIV Care composed of experts in clinical HIV care, mental health, health services research, private health insurance, health 1Eighteen percent undiagnosed in 2009 is an improvement over the 20 percent of people living with undiagnosed HIV in 2006 (CDC, 2012f)
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· Support people living with HIV with co-occurring health conditions and those who have challenges meeting their basic needs, such as housing. Targets By 2015, · increase the proportion of newly diagnosed patients linked to clinical care within 3 months of their HIV diagnosis from 65 to 85 percent.
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· Adopt community-level approaches to reduce HIV infection in high-risk communities. · Reduce stigma and discrimination against people living with HIV.
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The committee will address the following questions in its first consensus report: 1.What are the best sources of data (and which data elements should be used) from public and private HIV care databases to assess core indicators related to continuous care and access to supportive services, such as housing, for people living with HIV?
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b. If it is not possible to obtain a nationally representative sample of people living with HIV are there other alternatives (including using multiple existing data sources or requiring a complete accounting of all positive persons in care)
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The first asks how to obtain a nationally representative sample of people living with HIV in the United States prior to 2014, and the second poses a conditional question about alternative ways, including the use of "multiple existing data sources or requiring a complete accounting of all HIV-positive persons in care," to obtain "data on care and utilization beyond those individuals enrolled in the Ryan White HIV/AIDS Program" if it is not possible to obtain a nationally representative sample. The committee interpreted this conditional question to apply to the acquisition of necessary data to establish a baseline for health care coverage and utilization status prior to 2014, if it concluded it were not currently possible to collect these data from a nationally representative sample of HIV-diagnosed individuals in the United States.
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In addition, the first report examined how best to obtain data to estimate the indicators using existing data systems and "without substantial new investments." The same ongoing mechanism recommended in the present report to capture data from a nationally representative sample of HIV-diagnosed individuals in the United States "to monitor the impact of the ACA on health insurance and health care access" potentially could also be used to simplify the collection and analysis of data to generate a national estimate of the indicators recommended in the first report. Although the statement of task refers generally to "people living with HIV," for the purpose of this report, the committee interpreted this phrase as referring to people living with a diagnosis of HIV in the United States, since there is no practical way to obtain a "large sample (nationally representative or otherwise)
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Since not all of the programs that cover care for people living with HIV (e.g., Ryan White HIV/AIDS Program, Veterans Health Administration) are insurance, this report preferentially uses the term health care "coverage." For its first report, the committee considered more than 30 data systems and data collection efforts, including some that are HIV specific and others that are not but capture information on people living with HIV.
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Chapter 3 provides background information to support the committee's conclusions and recommendations for how to establish a baseline for health care coverage, utilization, and quality prior to the implementation of the ACA; how to obtain relevant data from a nationally representative sample of people with HIV in the United States; and how to continue to monitor the impact of the ACA on these outcomes. The chapter first provides background information on the limitations of national health-related surveys for collecting data on specific diseases such as HIV and the sampling design and methodology used in the HIV Cost and Services Utilization Study (HCSUS)
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In addition, increased testing and resultant diagnoses have contributed to a 9 percent increase in the number of people living with diagnosed HIV infection in the same time period. By the end of 2009, an estimated 1,148,200 people 13 years of age and older were living with HIV/AIDS in the United States, including an estimated 207,600 people with undiagnosed HIV/AIDS (CDC, 2012f, Table 5a)
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population in 2009, they represented 43 percent of people living with diagnosed HIV in 2009 and 46 percent of new HIV diagnoses in 2010 (CDC, 2011a, 2012a, Tables 1a and 15a)
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population but 19 percent of people living with diagnosed HIV in 2009 and 20 percent of new HIV diagnoses in 2010 (CDC, 2011b, 2012a, Tables 1a and 15a)
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are comparable to that of whites (CDC, 2012a, Table 15a) , their rates of HIV and AIDS diagnoses in 2010 were significantly greater.
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Approximately 75 percent of people living with diagnosed HIV in the United States are male (CDC, 2012a, Table 15a)
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. Sixty-eight percent of diagnosed HIV infections among men are acquired through male-to-male sexual contact (CDC, 2012a, p.
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TABLE 1-2 Females and Males in the United States Living with a Diagnosis of HIV, by Race and Ethnicity, 26 Year-End 2009 Female Estimated Male Estimated Percent of Percent of HIV- HIV- Total Rate (per Diagnosed Rate (per Diagnosed Estimated Race or Ethnicity Number 100,000) People Number 100,000)
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<1% <1% <1% 1% <1% 2% 19% 40% 37% <1% 17% 61% 1% 20% Females Living with HIV, Males Living with HIV, by Race/Ethnicity, Year-End 2009 by Race/Ethnicity, Year-End 2009 American Indian/ Native Hawaiian/ Alaskan Native Other Pacific Islander Asian White African American Multiple race Latino FIGURE 1-3 Percentage of females and males living with a diagnosis of HIV in the United States by racial or ethnic group, yearend 2009. SOURCE: Based on CDC, 2012a, Table 17a.
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. In addition, there is a significant increase in the number of people living with diagnosed HIV between the 13- to 19-year-old and the 20- to 29-year-old age groups (Table 1-3; CDC, 2102a, Table 15a)
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TABLE 1-3 People Living with a Diagnosis of HIV in the United States by Age Group, 2007-2009 2007 2008 2009 Estimated Estimated Estimated Age at End of Year Number Rate Number Rate Number Rate <13 3,729 7.4 3,318 6.5 2,945 5.7 13-14 1,459 18.4 1,362 17.4 1,218 15.7 15-19 6,611 32.2 6,947 33.7 6,983 34.1 20-24 21,047 104.1 23,374 115.1 25,866 126.1 25-29 42,992 214.7 44,701 218.8 46,394 224.7 30-34 61,326 332.8 62,330 335.4 63,541 335.6 35-39 101,426 508.4 96,619 487.3 91,523 468.2 40-44 145,078 700.0 140,427 692.1 134,215 673.8 45-49 139,947 647.2 148,956 688.4 155,757 719.0 50-54 100,497 505.0 108,914 535.2 117,290 567.7 55-59 59,313 343.1 66,005 374.9 73,759 409.3 60-64 27,935 203.5 32,581 227.5 37,066 246.9 65 21,688 60.2 24,816 67.3 28,143 74.8 SOURCE: Based on CDC, 2012a, Table 15a.
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. Clinical HIV Care and Supportive Services The advent of highly active antiretroviral therapy in the mid-1990s changed the face of the HIV epidemic.
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A number of factors, including mental health symptoms and disorders, substance abuse, and difficulty securing and maintaining basic needs of housing, food, and access and transportation to medical care and supportive services, have been shown to have a significant, negative impact on the health status and outcomes of people with HIV (see, e.g., Conviser and Pounds, 2002a,b; Gaynes et al., 2007; Kidder et al., 2007; Leaver et al., 2007; Lo et al., 2002; Pence, 2009; Royal et al., 2009; Stall et al., 2003; Weiser et al., 2009a,b)
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. People living in rural areas face barriers to accessing quality HIV care, including greater stigma regarding
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and the use of ART in reducing HIV morbidity, mortality, and transmission -- in conjunction with the number of people with HIV who either are never engaged in or are lost to HIV care and the significant disparities in HIV care and outcomes among different demographic groups-highlights the need to monitor health care coverage, service utilization, and quality of care for people with HIV in the United States. In its first report, the committee recommended 14 core indicators of HIV care (9 for clinical HIV care; 5 for mental health, substance use, and supportive services)
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Proportion of people newly diagnosed with HIV who are linked to clinical care for HIV within 3 months of diagnosis Rationale: Timely linkage to care improves individual health outcomes and reduces transmission of the virus to others. Proportion of people with diagnosed HIV infection who are in continuous care (two or more visits for routine HIV medical care in the preceding 12 months at least 3 months apart)
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Mortality among PLWHA should be inversely related to the quality of overall care delivered. Core Indicators for Mental Health, Substance Abuse, and Supportive Services Proportion of people with diagnosed HIV infection and mental health disorder who are referred for mental health services and receive these services within 60 days*
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, or active · housing received 2 or more · food or nutrition tuberculosis who are viral load tests · transportation not on ART Proportion immunized for hepatitis B (if needed) Proportion of HIV Proportion screened Proportion screened for mental health disorders infected pregnant for chlamydia, at least once in preceding 12 months women who are not gonorrhea, and on ART Proportion immunized syphilis for pneumococcal Proportion screened for substance use pneumonia disorders at least once in preceding 12 months Proportion screened for hepatitis C Proportion who Proportion assessed for need for received drug · housing Proportion immunized resistance testing · food or nutrition for influenza prior to ART initiation · transportation FIGURE 1-6 Continuum of HIV care arrow mapped to indicators for HIV care and supportive services.
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Monitoring health care coverage, utilization, and quality for 6Studies have shown that HIV treatment costs are significantly higher for individuals who enter treatment with lower CD4+ cell counts (e.g., <350/mm3) than for those who enter treatment earlier in the course of their disease (e.g., CD4+ cell counts >500/mm3)
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Use of Nationally Representative Samples for Monitoring Health Care Coverage and Utilization Among People with HIV In monitoring health care coverage and utilization for people with HIV in the United States, the use of nationally representative sampling is important to ensure that all subgroups within the U.S. HIV-infected population are included in the results.
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or other sources of health care coverage (e.g., Medicaid, Medicare, Ryan White HIV/AIDS Program) , including private insurers, also are not nationally representative, including data only from enrollees in their plans or programs.
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. Examples of Broad-Based Data Collection for Monitoring Health Care Coverage and Utilization Among People with HIV Population-based surveillance of the HIV epidemic in the United States began in 1981 when the first cases of opportunistic illnesses caused by what later would be identified as HIV were reported.
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, HIV Cost and Services Utilization Study, and MMP, have attempted to collect a broader range of data about health care coverage and utilization as well as supportive service needs, use, and experiences among people with HIV. National HIV Surveillance System The NHSS is a population-based census of all persons in the United States diagnosed with HIV infection and reported to CDC, including individuals receiving HIV care and those who are not in care, approximately 942,000 individuals (CDC, 2011d)
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, ACSUS focused on people receiving HIV care and provided longitudinal data on health care services use, expenditures, and sources of payment for care of adults and children at various stages of HIV infection, and the ways in which those 11The Federated States of Micronesia and the Republic of the Marshall Islands are the other two freely associated states. 12The HIV Surveillance Report for 2012, to be issued in 2014, will be the first to include aggregate data from all 50 states (CDC, 2010)
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was the first major research effort to collect information on a nationally representative sample of adults receiving care for their HIV infection (AHRQ, 1998; RAND, 2011)
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, yielding data on approximately 3,000 HIV-infected persons receiving care in hospitals, clinics, HMOs, or private practices who were living in urban areas or clusters of rural counties in the contiguous United States. The study population included racial and ethnic minorities, adult males and females with varying levels of education, routes of HIV infections, and health care service coverage (see Shapiro et al., 1999)
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Limitations of Nationally Representative Studies Although nationally representative studies hold promise for providing an overarching picture of health care coverage and utilization among people with HIV in the United States, they are generally not useful for generating comparisons among subgroups where stratification results in subgroups too small for meaningful analysis. For example, nationally representative studies such as MMP may not be sufficiently large to permit state-by-state analysis and comparisons of health care coverage and utilization.16 Yet, monitoring health care coverage and experiences at the state level is important because of state variations in implementation of the ACA (discussed in Chapter 2)
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2011. Clinical and behavioral characteristics of adults receiving medical care for HIV infection -- Medical Monitoring Project, United States, 2007.
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2012f. Monitoring selected national HIV prevention and care objectives by using HIV surveillance data -- United States and 6 U.S.
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2012a. How Does the Affordable Care Act Impact People Living with HIV/AIDS.
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2007. Access to housing as a structural intervention for homeless and unstably housed people living with HIV: Rationale, methods, and imple mentation of the housing and health study.
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1999. Natural history of HIV infection in the era of com bined antiretroviral therapy.
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2009. The impact of mental health and traumatic life experiences on antiret roviral treatment outcomes for people living with HIV/AIDS.
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Part 1: Perspectives and lessons learned from the HIV Cost and Services Utilization Study. Health Services Research 34(5, Part 1)
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