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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3 How to Obtain National Estimates of Health Care Coverage and Utilization for People with HIV in the United States
3 How to Obtain National Estimates of Health Care Coverage and Utilization for People with HIV in the United States
Pages 73-134
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The committee presents an overview of the project's design and its strengths and weaknesses for generating nationally representative estimates of HIV care and coverage for people with HIV. The committee also discusses how data from Medicaid, Medicare, and the Ryan White HIV/AIDS Program, which are currently the most common sources of health care coverage for people with HIV, as well as data from private health insurers, might be used to characterize the health care experiences of people with HIV.
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. The HCSUS offers a number of insights and lessons learned concerning the generation of nationally representative estimates of the care experiences of people with HIV, several of which have been incorporated into the MMP protocol.
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HOW TO ESTABLISH A BASELINE OF HEALTH CARE COVERAGE AND UTILIZATION PRIOR TO 2014 There currently is no single source of data to generate a baseline of care coverage and utilization for people with HIV. MMP is an ongoing federal supplemental HIV surveillance project designed to obtain nationally representative estimates of the care experiences of adults with HIV in care that collects data pertinent to monitoring the impact of the ACA on health coverage and utilization.
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The national population of inference for each MMP data collection cycle is HIV-infected adults age 18 years who received care from known providers of HIV medical care in the United States during a predefined population definition period (PDP) .2 The PDP has been January 1 through 2For local estimates in MMP project areas, the population of inference is HIV-infected adults who received care from known providers of HIV care in the project area during the population definition period (CDC, 2012c)
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Stage 2: Facility Sampling · Sampling frame: Facilities providing HIV care (CD4 or viral load testing and/or prescriptions for antiretroviral medications for HIV treatment and management) in project area jurisdictions · Sampling method: Probability proportionate to size sampling based on number of patients seen at the facility during the population definition period (January 1 to April 30 in the given year)
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.7 5The results of MMP are intended to be generalizable to adults with diagnosed HIV infection who are in care, and not limited to those whose infection has progressed to AIDS. However, when project area sampling was carried out in 2004, there was no data system from which to reliably estimate the number of people in the United States with diagnosed HIV infection; several states and dependent areas did not yet use confidential name-based reporting to collect HIV infection data.
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HIV medical care for purposes of constructing the facility sampling frame is defined as "conducting CD4 or HIV viral load testing and/or providing prescriptions for antiretroviral medications in the context of treating and managing a patient's HIV disease" (CDC, 2012c, p.
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as a patient sampling frame in select MMP project areas during the 2012 and 2013 data collection cycles. If the pilot study is successful and NHSS-based sampling is implemented, facility sampling could be reduced or eliminated (CDC, 2012e)
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. Results from 10Note that this is different from the definition of medical care used for facility sampling (i.e., "conducting CD4 or HIV viral load testing and/or providing prescriptions for antiretroviral medications in the context of treating and managing a patient's HIV disease")
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No substitutions are made for facilities found to be ineligible during recruitment or that decline to participate because doing so could invalidate the project sampling design. Given that the success of MMP is heavily dependent on a high facility response rate, CDC advises that project areas have a plan in place to maximize facility participation based on previous experience with
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. The facility response rates for the 2009 and 2010 data collection cycles were 76 percent and 80 percent respectively (Table 3-2)
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. Data Collection Core MMP data collection activities include interviewing sampled patients and abstracting their medical records.
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. After patients complete the MMP questionnaire, their medical records are abstracted by trained abstractors using an electronic medical record abstraction (MRA)
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. In previous MMP cycles, in addition to information in the medical record at the facility where the patient was sampled, the MRA could include clinical data contained in medical records at other facilities where the patient had received care (CDC, 2010c)
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· Interviewer greeted participant in a friendly manner. Consent Process · Interviewer followed all aspects of informed consent according to local protocol.
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. Recent Major Developments in the Medical Monitoring Project In a report to the committee on the use of MMP data to monitor implementation of the ACA, CDC reported that it is carrying out a demonstration project during the 2012 and 2013 data collection cycles to explore the feasibility of using the NHSS as a participant sampling frame which would expand MMP's population of inference to include individuals with diagnosed HIV who are not in care (CDC, 2012e)
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Beginning with the 2012 data collection cycle, CDC modified the linkage of MMP data with NHSS by adding 56 new data elements to the minimum data set. This modification was implemented to supplement incomplete data due to delays in reporting to complete the interview and MRA as well as to permit longitudinal monitoring of MMP participants' HIV disease progression and care utilization (CDC, 2012c,e)
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For example, while it is estimated that 17 percent of people living with diagnosed HIV in the United States have private health insurance (HHS, 2012b) , 37 percent of MMP participants reported having private health insurance or a health maintenance organization (HMO)
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that will improve access to health coverage and care. As noted previously, CDC is undertaking a demonstration project to pilot test the use of NHSS as a participant sampling frame.
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92 TABLE 3-3 Comparison of National HIV Surveillance System and Medical Monitoring Project Population by Select Characteristics National HIV Surveillance National HIV Surveillance Medical Monitoring Report, 2007 (estimated) a Report, 2009 (estimated)
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50-54 102,937 14 120,082 15 589 16 55-59 60,784 8 75,575 9 340 9 60-64 28,720 4 38,067 5 161 4 65 22,478 3 29,164 4 110 3 Race Black/African American 313,012 42 336,144 42 1,438b 40 White 259,665 35 273,883 34 1,272b 35 Asian 7,129 <1 8,422 1 19 <1 Native Hawaiian/Pacific Islander 497 <1 620 <1 11 <1 American Indian/Alaska Native 2,826 <1 3,040 <1 19 <1 More than one race 10,941 1 11,213 1 119 3 Unknown (NHSS) /other (MMP)
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MMP also does not currently include adolescents who have unique HIV care and treatment needs. Psychosocial issues, such as coping with a new HIV diagnosis and disclosure to friends and family, and frequently occurring comorbidities of mental illness and substance abuse, can complicate HIV disease management among adolescents.
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. Nevertheless they are a useful alternative to the face-to-face interview to increase response rates of MMP participants who are unable to complete the interview in person.
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. The facility and patient response rates in 2010 were 80 percent and 56 percent, respectively (Table 3-2)
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CDC's pilot study demonstrated that the use of RTS in two large facilities had a positive impact on patient response rates, showed potential to reach participants who are hard to reach using traditional recruitment methods, and was less burdensome to the participating facilities, which may in turn increase facility participation. CDC expressed concern that using RTS would place additional burden on MMP staff to manage RTS and provide statistical assistance (Personal communication, James Heffelfinger, CDC, June 11, 2012)
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. For example, MMP data can be used to evaluate the following: · sources of health care coverage and the distribution of different sources of coverage (e.g., private health insurance, Medicaid, Ryan White HIV/AIDS Program, Tricare or CHAMPUS, VHA coverage)
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Once laboratory reporting of CD4 and viral load results is implemented in all states, the NHSS may be the most robust source of information to estimate indicators for individuals who are recently diagnosed with HIV, such as the proportion of people who are newly diagnosed who have clinical diagnosis of AIDS.21 Since MMP's current sampling methodology involves sampling participants from care facilities, it is less likely to select individuals who are recently diagnosed with HIV who do not yet have an HIV care provider. However, MMP's capacity to generate nationally representative estimates for these indicators should be improved if CDC implements NHSS-based sampling.
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. Although not generalizable to all HIV-infected individuals in the United States, analysis of data from these specific programs, in addition to data from MMP, is essential to highlight how ACA provisions that affect program eligibility and coverage of services impact the care experiences of people with HIV.
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In addition, Medicaid data will encompass the care experiences of a greater number of HIV-infected individuals from racial and ethnic minority groups since racial and ethnic minorities disproportionately rely on the program as a source of health coverage. States administer the Medicaid program under broad federal guidelines and have some independence in determining income and other eligibility requirements.
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. Use of a combination of codes for diagnoses, procedures (e.g., CD4 counts, viral load tests)
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All claims capture dates of service to determine when beneficiaries received a service. Medicaid claims do not record the results of CD4 and viral load tests and thus cannot be used to calculate indicators of clinical HIV care that require such measures, such as the proportion of people with HIV with a CD4+ cell count <500 cell/mm3 who are not on ART (IOM, 2012)
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. Continuous access to prescription medications is a vital component of HIV care.
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Medicare does not collect data to estimate clinical HIV care indicators requiring specific CD4 or viral load values. Program data can be used to measure the mortality rate of people with HIV who are Medicare beneficiaries.
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. The expansion of the Medicaid program, changes in access to private health insurance, and other ACA provisions are expected to reduce 27In order to most effectively execute the services necessary, the Ryan White HIV/AIDS Program developed five "Parts," each of which is designed to help accommodate the needs of people living with HIV in the United States: Part A provides emergency assistance to Eligible Metropolitan Areas and Transitional Grant Areas that are most severely affected by the HIV epidemic; Part B provides grants to all 50 states, the District of Columbia, Puerto Rico, Guam, the U.S.
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. The RSR collects a number of data elements relevant to monitoring the impact of the ACA on the Ryan White HIV/AIDS Program as well as care for people with HIV who are enrolled in the program.
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These data can be used to assess care quality for program clients. For example, clinical data captured in the RSR permit the calculation of indicators recommended by the committee for continuity of HIV care, regular CD4 and viral load testing, and ART initiation.
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The interviews would assess HIV service needs and use; Ryan White HIV/AIDS Program funding prioritization and allocation processes; factors that influence regional variation in HIV care costs and Ryan White HIV/AIDS Program funding needs; third-party payment policies and reimbursement for HIV services; and methods of ensuring quality care under the ACA (HHS, 2012c)
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. NHID contains de-identified Health Insurance Portability and Accountability Act-compliant claims data from commercial health insurers, self-funded employer group plans, and Medicare Advantage plans.
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Such discrepancies may influence the availability and quality of data needed to monitor trends in health care coverage and utilization. A third challenge to combining data from multiple data systems relates to differences in the way that the systems operationalize data elements or define concepts to allow them to be measured.
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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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2010a. Clinical and Behavioral Characteristics of Adults Receiving Medical Care for HIV Infection: Medical Monitoring Project, 2005 Pilot Data Collection Cycle.
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2012. Sociocultural and structural barriers to care among undocumented Latino immigrants with HIV infection.
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2011. The spectrum of engagement in HIV care and its relevance to test-and-treat strategies for prevention of HIV infection.
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2012. Monitoring HIV Care in the United States: Indicators and Data Systems.
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2008. Assessing HIV care and unmet need: Eight databases and a bit of perseverance.
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2010. Technical Guidance for Researchers Summarizing and Describing Prescription Drug Utilization.
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NATIONAL ESTIMATES OF HEALTH CARE COVERAGE AND UTILIZATION 119 APPENDIX TABLE 3-1 Number and Percentage of Participants, by Selected Characteristics, Using Unweighted Data -- Medical Monitoring Project, United States, 2007 Characteristic No.a %b Genderc Male 2,633 72 Female 959 26 Transgender 47 1 Self-reported sexual orientation Heterosexual or straight 1,791 49 Homosexual, gay, or lesbian 1,514 42 Bisexual 278 8 Race/Ethnicityd Black, non-Hispanic 1,438 40 White, non-Hispanic 1,272 35 Hispanic or Latino 699 19 American Indian/Alaska Native 19 <1 Asian 19 <1 Native Hawaiian/Pacific Islander 11 <1 Multiracial 119 3 Other 61 2 Age at time of interview (yrs) 18-24 73 2 25-29 143 4 30-34 219 6 35-39 481 13 40-44 720 20 45-49 807 22 50-54 589 16 55-59 340 9 60-64 161 4 65 110 3 Education |
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aNumbers might not add to total because of missing data. Analyses limited to persons with diagnosis of HIV infection for at least 12 months before the interview.
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. fAmong 3,040 participants who reported having health insurance or coverage during the past 12 months.
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From medical record abstraction forms: · Is there documentation that any AIDS defining opportunistic illnesses (AIDS OI) were diagnosed prior to the SP start date?
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From medical record abstraction forms: · (Newly diagnosed) Is there documentation of the first positive HIV test result, or laboratory test results for CD4 cell count, or HIV viral load, prior to the SP start date?
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(SPIF) Proportion of people with Yes From questionnaire: diagnosed HIV infection who C6 · During the past 12 months, how many viral load tests have you received two or more viral had?
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From medical record abstraction forms: · Dates of visits for medical care and dates of laboratory test results, etc. · Is there documentation of CD4 cell count test results prior to the SP start date?
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(No; Yes; Refused to answer; Don't know) From medical record abstraction forms: · Is there documentation of CD4 cell count test results prior to the SP start date?
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or more months and have a C5c · What was the result of your most recent viral load test? (Below the viral load below the level of level of detection, undetectable; detectable, but less than 5,000 viral detection copies/ml; 5,000 to 100,000 viral copies/ml; Greater than 100,000 viral copies/ml; Refused to answer; Don't know)
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(MHF) · Is there documentation of the first positive HIV test result, or laboratory test results for CD4 cell count, or HIV viral load, prior to the SP start date?
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From medical record abstraction forms: · Is there documentation of any of the following mental illnesses prior to the SP start date? (Anxiety disorder [generalized anxiety disorder, GAD]
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(No; Yes; Refused to answer; Don't know) From medical record abstraction forms: · Is there documentation of reported or suspected alcohol abuse or other non-prescribed use of substances, including counseling or treatment for alcohol and/or substance use/abuse prior to the SP?
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(If yes, abstractor enters the type of diagnosis which may include alcoholism)
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(No; Yes; Refused to answer; Don't know) Housing Status data also captured in the following questions: A6 · What was the main reason you did not go to a doctor, nurse, or other health care worker for HIV medical care within 3 months of testing positive for HIV?
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(SPSF) Proportion of people with Yes From questionnaire: diagnosed HIV infection who A31a · During the past 12 months, did you get meal or food services?
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Therefore, as currently designed the MMP does not provide data to estimate indicators for individuals under the age of 18. MHF = Medical History Form; SP = Surveillance Period; SPIF = Surveillance Period Inpatient Form; SPSF = Surveillance Period Summary Form; VL = Viral Load.
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