3

How to Obtain National Estimates of Health Care Coverage and Utilization for People with HIV in the United States

This chapter provides information to support the committee’s conclusions and recommendations, presented in Chapter 4, for how to establish a baseline of health insurance and health care access for people with HIV in the United States prior to 2014 when key provisions of the Patient Protection and Affordable Care Act (ACA) (P.L. 111-148) are scheduled to be implemented (Statement of Task, subquestions a and b), and for how to continue to obtain data from a large sample of people with HIV to monitor the impact of the ACA on access to health insurance and health care access after 2014 (Statement of Task, subquestion c). In the context of describing how to monitor the impact of the ACA after 2014, the committee discusses an existing surveillance project conducted by the Centers for Disease Control and Prevention (CDC) called the Medical Monitoring Project (MMP) that is designed to obtain nationally representative estimates of the clinical and behavioral characteristics of HIV-diagnosed individuals in care. 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.

The HIV Cost and Services Utilization Study (HCSUS) was the first study designed to produce nationally representative estimates of people with HIV regularly receiving medical care (Shapiro et al., 1999). Active from 1994 to 2000, the HCSUS was a prospective cohort study involving



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement



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 73
3 How to Obtain National Estimates of Health Care Coverage and Utilization for People with HIV in the United States This chapter provides information to support the committee's conclu- sions and recommendations, presented in Chapter 4, for how to establish a baseline of health insurance and health care access for people with HIV in the United States prior to 2014 when key provisions of the Patient Pro- tection and Affordable Care Act (ACA) (P.L. 111-148) are scheduled to be implemented (Statement of Task, subquestions a and b), and for how to continue to obtain data from a large sample of people with HIV to monitor the impact of the ACA on access to health insurance and health care access after 2014 (Statement of Task, subquestion c). In the context of describing how to monitor the impact of the ACA after 2014, the committee discusses an existing surveillance project conducted by the Centers for Disease Con- trol and Prevention (CDC) called the Medical Monitoring Project (MMP) that is designed to obtain nationally representative estimates of the clinical and behavioral characteristics of HIV-diagnosed individuals in care. 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. The HIV Cost and Services Utilization Study (HCSUS) was the first study designed to produce nationally representative estimates of people with HIV regularly receiving medical care (Shapiro et al., 1999). Active from 1994 to 2000, the HCSUS was a prospective cohort study involving 73

OCR for page 73
74 MONITORING HIV CARE IN THE UNITED STATES approximately 3,000 participants. HCSUS participants were interviewed several times over a 3-year period (a baseline interview with follow-up interviews at 6 and 12 months). In addition to the interview, participants' medical, pharmacy, and financial records were abstracted and a subset of participants had their blood drawn for laboratory testing. Among the study's main objectives was to guide policy decisions on the allocation of health care resources by providing reliable national estimates of the health care services received by people with HIV and on the costs of those services (RAND, 2011). 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. The committee uses HCSUS as a reference through- out its discussion of MMP in this chapter's section on how to continue to regularly obtain data to monitor health care coverage and utilization after 2014. The committee reviewed several existing national population-based health surveys as potential sources of data on health care coverage and utilization for a nationally representative sample of people with HIV. These include the National Health Interview Survey (NHIS), which is the principal source of information on the health of the non-institutionalized U.S. popu- lation (CDC, 2012a); the Medical Expenditure Panel Survey (MEPS); the National Health and Nutrition Examination Survey (NHANES)1; the Be- havioral Risk Factor Surveillance System (BRFSS); and the National Survey on Drug Use and Health (NSDUH). Although these surveys capture data relevant to monitoring care within the context of the ACA (for example, on sources of care coverage, care utilization, and demographic information), the number of people with HIV included in a given sample will be small because the prevalence of HIV in the general U.S. population is less than 1 percent (Shapiro et al., 1999; UNAIDS, 2010). A 2007 study that combined 2002-2004 MEPS data to evaluate the relationship between Ryan White HIV/AIDS Program service utilization and patient characteristics identi- fied 125 people with HIV (Rein, 2007). Even the NHIS, which interviews between 75,000 and 100,000 individuals each year, will not include suf- ficient numbers of people with HIV to draw meaningful conclusions about their care experiences. Furthermore, while these population-based surveys are designed to be representative of the general U.S. population, they are not designed to be representative of people with any specific disease (CDC, 2010d; Shapiro et al., 1999). Including questions about HIV serostatus and 1In addition to an interview component, the NHANES includes an examination involving medical, dental, and physiological measurements and the administration of laboratory tests, including HIV antibody tests. Findings from the NHANES are designed to determine the prevalence of and risk factors for diseases (CDC, 2011a).

OCR for page 73
NATIONAL ESTIMATES OF HEALTH CARE COVERAGE AND UTILIZATION 75 additional questions on HIV care experiences for HIV-infected individuals in national surveys would not be adequate to generate nationally repre- sentative estimates of their health care coverage and utilization. Thus, the committee did not consider national surveys as practical sources of data to establish a nationally representative baseline of health care coverage and utilization for people with HIV prior to 2014, nor to continue to obtain such data after 2014. 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. However, as discussed in the following section, MMP currently has limitations to its design and participant response rate that raise concerns about the representativeness of the data. Combining data from multiple data sources is the most viable option for generating a baseline of care coverage and utilization prior to 2014. In its first report, the committee identifies 14 core indicators to moni- tor the impact of the ACA and National HIV/AIDS Strategy (NHAS) on improvements in HIV care (see Table 1-4 in Chapter 1). The committee also identifies sources of data to estimate the indicators, including HIV-specific data sources (e.g., the National HIV Surveillance System, the Ryan White HIV/AIDS Program, and ongoing epidemiologic studies of people with HIV) as well as data sources that are not HIV-specific but that collect data relevant to monitoring care for people with HIV (e.g., Medicaid, Medicare, Veterans Health Administration, and private health insurer data). The com- mittee revisited these data sources for this second report and found that many capture data pertinent to monitoring the impact of the ACA on care for people with HIV such as health coverage and service utilization infor- mation and receipt of recommended preventive health services. While none of these systems are designed to be nationally representative, together they can provide a reasonably accurate baseline of care coverage and utiliza- tion before 2014. As is outlined in the committee's first report, these data systems also provide a collective platform for estimating indicators of care quality and, thus, can be used to generate estimates of care quality before full implementation of the ACA (IOM, 2012).

OCR for page 73
76 MONITORING HIV CARE IN THE UNITED STATES HOW TO CONTINUE TO OBTAIN DATA TO MONITOR HEALTH CARE COVERAGE AND UTILIZATION AFTER 2014 Medical Monitoring Project MMP was initiated by CDC in 2005 in response to the Institute of Medicine (IOM) report Measuring What Matters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act, which described a need for representative data on the care and preventive service needs of individu- als with HIV in the United States (CDC, 2012e; IOM, 2004). MMP utilizes a repeated (annual) cross-sectional design to obtain data from a national probability sample of HIV-diagnosed adults in care to describe the clinical and virologic status of these persons; describe the prevalence of comorbidities related to HIV disease; describe HIV care and supportive services received and the quality of such services; and identify met and unmet needs for HIV care and prevention services to inform prevention and care planning groups, health care provid- ers, and other stakeholders (CDC, 2012c). MMP is the only study since HCSUS (Bozzette et al., 1998; RAND, 2011) that is designed to be nationally representative of HIV-diagnosed adults in care in the United States. Whereas MMP employs a cross-sectional design, however, HCSUS was a prospective study that followed a cohort of individuals in care for HIV over time (RAND, 2011). MMP is conducted through cooperative agreements between CDC's Division of HIV/AIDS Prevention-Surveillance and Epidemiology and state and local health de- partments in participating MMP project areas (CDC, 2012c). Current Sampling Methodology MMP uses three-stage, probability proportionate to size sampling for the selection of (1) project areas, (2) facilities that provide outpatient HIV medical care in selected project areas, and (3) HIV-infected adults who receive medical care at selected facilities (Figure 3-1). A similar sampling methodology was used in HCSUS to identify a cohort of people with HIV in care. 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).

OCR for page 73
NATIONAL ESTIMATES OF HEALTH CARE COVERAGE AND UTILIZATION 77 Stage 1: Project Area Sampling Sampling frame: The 50 U.S. states, the District of Columbia, and Puerto Rico Sampling method: Probability proportionate to size sampling based on number of AIDS cases in the project area at end of 2002 Carried out once to date (in 2004) 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) Sampling interval: Once each year in 2007 and 2008; once every 2 years during 2009-2013 Stage 3: Patient Sampling Sampling frame: Patients 18 diagnosed with HIV (with or without AIDS) who received medical care at the facility during the population definition period Sampling method: Equal probability Sampling interval: Each year during 2007-2013 FIGURE 3-1 MMP sampling design. SOURCE: Adapted from CDC, 2012c; McNaghten et al., 2007. April 30 for each full year of MMP data collection thus far (CDC, 2012c,e). The first full year of MMP data collection was 2007; 13 project areas were Figure funded to pilot data collection on 3-1 replaced patients who were in care in 2005,3 and CDC did not collect data onvector editable patients in care in 2006 due to delays in the Office of Management and Budget's (OMB's) clearance of MMP activities4 (CDC, 2010a). Project Area Sampling Project area sampling took place in early 2004. Consistent with the goal of MMP to obtain a national probability sample of adults in care for HIV infection, all 50 U.S. states, the District of Columbia, and Puerto Rico were eligible for selection. Probability proportionate to size sampling was used to select primary geographic sampling units where the measure of size 3The 13 project areas were Delaware, Florida, Houston (Texas), Illinois, Los Angeles (California), Maryland, Michigan, New Jersey, New York City (New York), Philadelphia (Pennsylvania), South Carolina, Texas, and Washington (CDC, 2012c). 4The Paperwork Reduction Act of 1980 requires Office of Management and Budget ap- proval of federally sponsored data collection activities (HHS, 2012a) such as MMP.

OCR for page 73
78 MONITORING HIV CARE IN THE UNITED STATES was the total number of people living with AIDS at the end of 2002.5 Based on available funding for MMP, 20 primary geographic sampling units were selected (19 states and 1 territory); 6 municipal jurisdictions located within the selected project areas and separately funded for HIV/AIDS surveillance were also selected, resulting in a total of 26 project areas. All of the project areas agreed to participate in MMP (CDC, 2012c,e).6 Of the 26 project areas initially sampled, 23 have been funded to con- duct MMP since 2009. States and territories currently funded for MMP are California (other than Los Angeles and San Francisco), Delaware, Florida, Georgia, Illinois (other than Chicago), Indiana, Michigan, Missis- sippi, New Jersey, New York (other than New York City), North Carolina, Oregon, Pennsylvania (other than Philadelphia), Puerto Rico, Texas (other than Houston), Virginia, and Washington. Municipal project areas cur- rently funded for MMP are Chicago, Illinois; Houston, Texas; Los Angeles County, California; New York, New York; Philadelphia, Pennsylvania, and San Francisco, California. In addition to the areas noted above, the project areas funded for the 2007 and 2008 data collection cycles included Maryland, Massachusetts, and South Carolina (CDC, 2012c,e). While maintaining a nationally representative system, these states were removed from the project area sample in 2009 to reduce project costs and improve operational efficiency (Personal communication, Jacek Skarbinski, CDC, August 27, 2012). CDC's 2012 HIV Surveillance Report includes data from 46 states and 5 dependent areas that have used confidential name-based HIV (in addition to AIDS) reporting since at least January 2007. Although MMP project area sampling was conducted in 2004, data from the report indicate that about 80 percent of the 800,784 people 13 reported to be living with a diagnosis of HIV infection in 2009 resided in the 19 states and 1 dependent area that are the current MMP project areas (CDC, 2012b).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. The estimated number of people diagnosed with AIDS was used as an indirect measure of size to sample project areas because reporting of AIDS diagnoses had been implemented nationally (CDC, 2010b, 2012c,e). All U.S. states, the District of Columbia, and six dependent areas had implemented confidential name-based HIV reporting as of April 2008 (CDC, 2011c). 6Please see CDC, 2012c (Appendix A) for a fuller description of the project area sampling methodology. 72009 is the most recent year for which estimates of the total number of people living with a diagnosis of HIV infection by state and dependent area are available (CDC, 2012b).

OCR for page 73
NATIONAL ESTIMATES OF HEALTH CARE COVERAGE AND UTILIZATION 79 Facility Sampling The second stage of sampling involves the selection of facilities from each project area. Facility samples were drawn each year in 2007 and 2008 and are being drawn every other year during 2009 to 2013. A comprehen- sive list of eligible facilities providing HIV medical care within a project area jurisdiction serves as the facility sampling frame (CDC, 2012c,e). Compiled by health department staff in the project area (i.e., "project area staff"), the facility sampling frame is composed of facilities that reported patients to the HIV/AIDS Reporting System (HARS) or Enhanced HIV/ AIDS Reporting System (eHARS), databases used by health departments to collect, manage, and report state or local HIV/AIDS surveillance data to CDC.8 Project area staff may also consult state or local laboratory report- ing databases or prescription drug lists, which contain information on pro- viders who order laboratory tests and prescribe antiretroviral medications, to identify eligible facilities (CDC, 2012c,e). Outpatient facilities, including hospital-affiliated and freestanding clinics, health care institutions, and private and group physician practices that are providing HIV medical care in the jurisdiction, and that have a centralized medical record system, are eligible for MMP. 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 pa- tient's HIV disease" (CDC, 2012c, p. 9) (Figure 3-2). Facilities that do not provide medical care (e.g., those that exclusively provide HIV counseling and testing services or that obtain CD4 count and viral load information for referral purposes only) are not eligible. Also ineligible are facilities that only provide inpatient care (e.g., hospices); emergency departments; facili- ties located outside the project area; correctional and work-release facilities; tribal facilities; and facilities located on military installations.9 Veterans Health Administration (VHA) facilities are eligible to participate in MMP and it is a requirement that they are included on the facility sampling frame (CDC, 2012c). For each facility included on the facility sampling frame, MMP proj- 8eHARS is a browser-based system created by CDC and deployed at health departments. CDC developed eHARS as a replacement for the older HARS to help expedite and standardize reporting of HIV/AIDS information (CDC, 2009a). 9According to the 2012 MMP protocol, inpatient facilities and emergency departments are excluded because the medical care provided to people with HIV in these settings may not be HIV-related. Furthermore, some providers in inpatient hospital facilities, such as medical residents, may not be known providers of HIV care and thus not be eligible to carry out MMP patient contact and recruitment activities. Hospices may provide HIV medical care but are excluded from MMP because they are not considered to be known regular providers of such care (CDC, 2012c).

OCR for page 73
80 MONITORING HIV CARE IN THE UNITED STATES FIGURE 3-2 MMP facility eligibility determination algorithm. SOURCE: CDC, 2012c. Figure 3-2 Bitmapped ect area staff identifies an estimated patient load--a best estimate of the total number of eligible patients who receive care at the facility during the PDP. The estimated patient load is based on data provided directly by facilities, for example, based on patient data runs or another record-based source. Data from HARS, eHARS, state or local laboratory databases, or prescription drug lists may be used to estimate a facility's patient load in cases where information cannot be obtained from facilities (CDC, 2012c). CDC uses the patient load information reported by facilities to select facili- ties using probability proportionate to size sampling, where facilities with higher estimated patient loads are more likely to be selected. According to the 2012 MMP protocol, between 25 and 50 facilities were selected in most project areas for the 2011 and 2012 data collection cycles (CDC, 2012c,e). As discussed below, CDC is pilot testing the feasibility of using the National HIV Surveillance System (NHSS) 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).

OCR for page 73
NATIONAL ESTIMATES OF HEALTH CARE COVERAGE AND UTILIZATION 81 Patient Sampling The third stage of sampling involves the selection of patients from each participating facility. To be eligible for MMP, patients must (1) be diagnosed with HIV (with or without AIDS) any time prior to the end of the population definition period or PDP (between January 1 and April 30 of the given year); (2) be at least 18 years of age at the beginning of the PDP; and (3) have received medical care during the PDP. Medical care for purposes of patient sampling is defined as "any visit to the facility for medi- cal care or prescription of medications, including refill authorizations and vaccinations" (CDC, 2012c, p. 14).10 Patients must also be able to provide informed consent and cannot have already participated in MMP during the current data collection cycle to be eligible for participation. Patient sampling is carried out on an annual basis (CDC, 2012c). Patients are selected for MMP using list-based sampling. Each partici- pating facility provides local project area staff with a list of HIV-infected adults who received medical care at the facility during the PDP. After project area staff have received patient lists from all participating facili- ties within the jurisdiction, a master file is transmitted to CDC for patient sampling. Sampling is performed so that all patients who were seen during the 4-month sampling period have an equal probability of selection. The identification numbers of selected patients are returned to project areas for patient recruitment (CDC, 2012c,e). CDC determined that 400 is the minimum sample size for a state to obtain population estimates with an acceptable level of precision, including patients sampled in a municipal jurisdiction or statewide project area. Patient sample sizes across all facili- ties in a project area ranged from 100 to 800 during 2012. Approximately 9,400 participants were sampled in total (Table 3-1; CDC, 2012c). CDC pilot tested real-time sampling (RTS) in two large facilities in the Philadelphia project area in 2011. RTS can improve coverage, response rates, and data timeliness, including among harder-to-reach populations since study participants are recruited when they come for services (Iachan et al., 2011). In the MMP pilot study, "office period units" were selected using probability proportionate to size sampling where size was the patient flow during a particular time of day in a particular office within the selected facility. Patients believed to be eligible for MMP (as determined by facility staff) with scheduled appointments during the selected office period units comprised the sampling frame. Patients were selected from this sampling frame using systematic random sampling (Iachan et al., 2011). 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 antiret- roviral medications in the context of treating and managing a patient's HIV disease") (CDC, 2012c, p. 9).

OCR for page 73
82 MONITORING HIV CARE IN THE UNITED STATES TABLE 3-1 MMP Patient Sample Sizes by Project Area, 2012 Project Area Patient Sample Size California (excluding LA, SF) 500 Los Angeles County 400 San Francisco 400 Delaware 400 Florida 800 Georgia 400 Illinois (excluding Chicago) 100 Chicago 400 Indiana 400 Michigan 400 Mississippi 400 New Jersey 500 New York State (excluding NYC) 200 New York City 800 North Carolina 400 Oregon 400 Pennsylvania (excluding Philadelphia) 100 Philadelphia 400 Puerto Rico 400 Texas (excluding Houston) 400 Houston 400 Virginia 400 Washington 400 Total 9,400 SOURCE: CDC, 2012c. the pilot study were promising with regard to sampling completion. HCSUS also used RTS in select sites to good advantage to address several imple- mentation challenges also faced by MMP (Frankel et al., 1999; Shapiro et al., 1999). However, due to additional burden on MMP staff to manage the sampling process and provide statistical assistance, CDC decided not to continue using RTS for the remainder of the 2009-2013 funding cycle (Iachan et al., 2011; Personal communication, James Heffelfinger, CDC, June 11, 2012). Facility and Patient Recruitment Facilities sampled for MMP are recruited by project area staff. No sub- stitutions 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

OCR for page 73
NATIONAL ESTIMATES OF HEALTH CARE COVERAGE AND UTILIZATION 83 TABLE 3-2 MMP Facility and Patient (Interview) Response Rates, 2009 and 2010 Facility Raw Adjusted Response Patients Interviews Response Response Rate Sampled Completed Ratea Rate 2009 76% 9,038 4,620 51% 56% 2010 80% 9,300 4,981 54% 56% aBefore adjustment for patients sampled who are later identified as ineligible. SOURCE: Personal communication, Jacek Skarbinski, CDC, September 12, 2012. MMP and similar projects, as well as discussions (e.g., on conference calls, at meetings) among staff in the various project areas (CDC, 2012c). The facility response rates for the 2009 and 2010 data collection cycles were 76 percent and 80 percent respectively (Table 3-2) (Personal communication, Jacek Skarbinkski, CDC, September 12, 2012). Patients may be recruited either by facility or project area staff. The decision of which of the two methods to use is based on local facility preference and state or local project area Institutional Review Board (IRB) requirements. Project area staff is responsible for scheduling interviews (discussed below) for all patients who are eligible and agree to participate in MMP (CDC, 2012c,e). The adjusted response rate for the interview por- tion of the study in 2010, the most recent year for which data are available, was 56 percent (Table 3-2) (Personal communication, Jacek Skarbinksi, CDC, September 12, 2012). By comparison, the HCSUS interviewed 76 percent of individuals sampled (Shapiro et al., 1999). The interviewer- administered NHIS household survey averages a 90 percent response rate each year, although the response rate for the sample adult core component of the NHIS, which collects information on health conditions and access to and utilization of health care services for one adult per household, was about 61 percent in 2010 (Schiller et al., 2012). The unweighted response rate for the 2009-2010 NHANES interview was 79 percent (CDC, 2011d). The NSDUH, which collects sensitive health information, such as on use of illegal drugs, alcohol, and tobacco by the U.S. civilian, noninstitutional- ized population aged 12 or older via face-to-face interviews, achieved a 75 percent response rate in 2010 (SAMHSA, 2011). MMP participants are compensated in either cash or cash equivalent (e.g., personal gifts, gift cer- tificates, bus or subway tokens) for the interview.11 The compensation was valued to be about $25 for the 2012 data collection cycle, with the exact amount varying by project area (CDC, 2012c). 11Non-cash reimbursements are provided in project areas where local regulations prohibit cash reimbursements (CDC, 2012c).

OCR for page 73
APPENDIX TABLE 3-2Continued 124 Does MMP Adhere to Indicator Indicators? Question ID Questions Collecting Data Related to Indicator From medical record abstraction forms: Dates of visits for medical care and dates of laboratory test results, etc. Proportion of people with Yes From questionnaire: diagnosed HIV infection who C3 During the past 12 months, how many CD4 counts have you had? received two or more CD4 (__ __; Refused to answer; Don't know) tests in the preceding 12 months From medical record abstraction forms: Is there documentation of CD4 cell count done at this visit? (If yes, abstractor enters value) (SPVF) Is there documentation of CD4 cell count test results during this inpatient stay? (If yes, abstractor enters value) (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? (__ __; Refused to answer; Don't know) load tests in the preceding 12 months From medical record abstraction forms: Is there documentation of HIV viral load test done at this visit? (If yes, abstractor enters value) (SPVF) Is there documentation of HIV viral load test results during this inpatient stay? (If yes, abstractor enters value) (SPIF)

OCR for page 73
Proportion of people with Yes From questionnaire: diagnosed HIV infection in C2a What was the result of your most recent CD4 count? (0-49; 50-99; continuous care for 12 or 100-199; 200-349; 350-499; 500 or more; Refused to answer; more months and with a Don't know) CD4+ cell count 350 cells/ A8 During the past 12 months, was there one usual place, like a mm3 doctor's office or clinic, where you went for most of your HIV medical care? (No; Yes; Refused to answer; Don't know) A10 What is the name of this place where you went for most of your HIV medical care during the past 12 months? A10a Did you get any sort of care at [USE FACILITY NAME] between [INSERT START DATE] and [INSERT END DATE]? (No; Yes; Refused to answer; Don't know) A10b Between [INSERT START DATE] and [INSERT END DATE], how many times had you been to [USE FACILITY NAME] for any sort of care? (__ __ __; Refused to Answer; Don't know) 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? (If yes, abstractor enters lowest CD4 cell count and date of lowest CD4 count) (MHF) Is there documentation of CD4 cell count done at this visit? (If yes, abstractor enters value) (SPVF) Is there documentation of CD4 cell count test results during this inpatient stay? (If yes for CD4 count, abstractor enters value) (SPIF) 125 continued

OCR for page 73
APPENDIX TABLE 3-2Continued 126 Does MMP Adhere to Indicator Indicators? Question ID Questions Collecting Data Related to Indicator Proportion of people with Yes From questionnaire: diagnosed HIV infection with C2a What was the result of the most recent CD4 count? (0-49; 50-99; a measured CD4+ cell count 100-199; 200-349; 350-499; 500 or more; Refused to answer; <500 cells/mm3 who are not Don't know) on ART T4 Are you currently taking any antiretroviral medicines for your HIV? (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? (If yes, abstractor enters lowest CD4 cell count and date of lowest CD4 count) (MHF) Is there documentation of CD4 cell count done at this visit? (If yes, abstractor enters value) (SPVF) Is there documentation of CD4 cell count results during this inpatient stay? (If yes, abstractor enters value) (SPIF) Is there documentation of prescription of antiretroviral therapy (ART) prior to the SP start date? (If yes, abstractor enters date of first prescribed ART) (MHF) Is there documentation of prescription or continuation of antiretroviral therapy (ART) during this visit? (If yes, abstractor enters the type of ART prescribed) (SPVF) Is there documentation of prescription of antiretroviral therapy (ART) during this inpatient stay? (If yes, abstractor enters the type of ART prescribed) (SPIF)

OCR for page 73
Proportion of people with Yes From questionnaire: diagnosed HIV infection who C5b What was the month and year of your most recent viral load? have been on ART for 12 (MM/YYYY; Refused to answer; Don't know) 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) T3 When was the first time you ever took any antiretroviral medicines for your HIV? (MM/YYYY; Refused to answer; Don't know) T4 Are you currently taking any antiretroviral medicines for your HIV? (No; Yes; Refused to answer; Don't know) T14 During the past 12 months, have you taken any antiretroviral medicines? (No; Yes; Refused to answer; Don't know) T16 During the past 12 months, have you ever purposefully taken a "drug holiday" from your antiretroviral medicines that wasn't recommended by your doctor? That is, did you plan to not take any doses of one or more of your antiretroviral medicines for at least two whole days in a row? (No; Yes; Refused to answer; Don't know) 127 continued

OCR for page 73
APPENDIX TABLE 3-2Continued 128 Does MMP Adhere to Indicator Indicators? Question ID Questions Collecting Data Related to Indicator From medical record abstraction forms: Is there documentation of prescription of antiretroviral therapy (ART) prior to the SP start date? (If yes, abstractor enters date of first prescribed ART) (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? (If yes for viral load, abstractor enters date of most recent undetectable result) (MHF) Is there documentation of prescription or continuation of antiretroviral therapy (ART) during this visit? (Yes; No) (SPVF) Is there documentation of any of HIV viral load test done at this visit? (If yes, abstractor enters value) (SPVF) Is there documentation of prescription of antiretroviral therapy (ART) during this inpatient stay? (Yes; No) (SPIF) Is there documentation of any HIV viral load test during this inpatient stay? (If yes, abstractor enters value) (SPIF) All-cause mortality rate Yes Section XI From medical record abstraction forms: among people diagnosed with Is there documentation that the patient died during the SP? (Yes/ HIV infection No) If yes: o Date of death during the Surveillance Period (MM/DD/YYYY) o Cause of death (accident, homicide, suicide, natural, other (specify), cause not documented) (SPSF)

OCR for page 73
Proportion of people with No From questionnaire: diagnosed HIV infection and A18 During the past 12 months, were you enrolled in an inpatient mental health disorder who mental health facility? (No; Yes; Refused to answer; Don't know) are referred for mental health A26a During the past 12 months, did you get mental health services? services and receive these (No; Yes; Refused to answer; Don't know) services within 60 days A26b During the past 12 months, have you needed mental health services? (No; Yes; Refused to answer; Don't know) 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], Bipolar disorder, Depression [major depression, depressive disorder], Psychosis) (MHF) Is there documentation of any of the following referrals during the SP? (Responses include referrals for mental health services) (SPSF) Is there documentation of any new or existing diagnoses of conditions other than AIDS OI during this visit? (If yes, abstractor enters the type of diagnosis which may include anxiety disorder, depression diagnosed by physician, and psychosis including schizophrenia) (SPVF) Is there documentation of any new or existing diagnoses of conditions other than AIDS OI during this inpatient stay? (If yes, abstractor enters the type of diagnosis which may include anxiety disorder, depression diagnosed by physician, and psychosis including schizophrenia) (SPIF) 129 continued

OCR for page 73
APPENDIX TABLE 3-2Continued 130 Does MMP Adhere to Indicator Indicators? Question ID Questions Collecting Data Related to Indicator Proportion of people with No From questionnaire: diagnosed HIV infection and A19 During the past 12 months, were you enrolled in an inpatient drug substance use disorder who or alcohol treatment facility? (No; Yes; Refused to answer; Don't are referred to substance know) abuse services and receive A27a During the past 12 months, did you get drug or alcohol counseling these services within 60 days or treatment? (No; Yes; Refused to answer; Don't know) A27b During the past 12 months, have you needed drug or alcohol counseling or treatment? (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? If yes: o Is there documentation of alcohol abuse prior to the SP? o Is there evidence of any injection substance use (e.g., track marks) documented prior to the SP? (If yes, abstractor enters the type of substance and type of use [e.g., injection, non- injection]) (MHF) Is there documentation of any referrals for substance abuse prevention services during the SP? (Yes; No) (SPSF)

OCR for page 73
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, during the SP? If yes: o Is there documentation of alcohol abuse during the SP? o Is there evidence of any injection substance use (e.g., track marks) documented during the SP? (If yes, abstractor enters the type of substance and type of use [e.g., injection, non- injection]) (SPSF) Is there documentation of any new or existing diagnoses of conditions other than AIDS OI during this visit? (If yes, abstractor enters the type of diagnosis which may include alcoholism) (SPVF) Is there documentation of any new or existing diagnoses of conditions other than AIDS OI during this inpatient stay? (If yes, abstractor enters the type of diagnosis which may include alcoholism) (SPIF) 131 continued

OCR for page 73
APPENDIX TABLE 3-2Continued 132 Does MMP Adhere to Indicator Indicators? Question ID Questions Collecting Data Related to Indicator Proportion of people with Yes From questionnaire: diagnosed HIV infection who D10 During the past 12 months, have you were homeless or temporarily o lived on the street? (No; Yes; Refused to answer; Don't know) or unstably housed at o lived in a shelter? (No; Yes; Refused to answer; Don't know) least once in the preceding o lived in a Single Room Occupancy (SRO) hotel (No; Yes; 12 months Refused to answer; Don't know) o lived in a car? (No; Yes; Refused to answer; Don't know) A30a During the past 12 months, did you get shelter or housing services? (No; Yes; Refused to answer; Don't know) A30b During the past 12 months, have you needed shelter or housing services? (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? ("Experienced homelessness" is a response option) A7a What was the main reason you didn't visit a doctor, nurse, or other health care worker for HIV medical care during the past 6 months? ("Experienced homelessness" is one of the response options) T2 What is the main reason you have never taken any antiretroviral medicines? ("Homeless" is a response option) T4a What is the main reason you aren't currently taking any antiretroviral medicines? ("Homeless" is a response option) T10 The last time you missed taking your antiretroviral medicines, what were the reasons? ("Homeless" is a response options)

OCR for page 73
From medical record abstraction forms: Is there documentation of any of the following referrals during the SP? (If yes, abstractor enters the type of referral which may include food and housing support services) (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? (No; experienced food or nutrition Yes; Refused to answer; Don't know) insecurity at least once in the A31b During the past 12 months, have you needed meal or food services? preceding 12 months (No; Yes; Refused to answer; Don't know) A36a During the past 12 months, did you get nutritional services? (No; Yes; Refused to answer; Don't know) A36b During the past 12 months, have you needed nutritional services? (No; Yes; Refused to answer; Don't know) From medical record abstraction forms: Is there documentation of any of the following referrals during the SP? (If yes, abstractor enters the type of referral which may include food and housing support services) (SPSF) 133

OCR for page 73
APPENDIX TABLE 3-2Continued 134 Does MMP Adhere to Indicator Indicators? Question ID Questions Collecting Data Related to Indicator Proportion of people with Yes From questionnaire: diagnosed HIV infection A33a During the past 12 months, did you get transportation assistance? who had an unmet need for (No; Yes; Refused to answer; Don't know) transportation services to A33b During the past 12 months, have you needed transportation facilitate access to medical assistance? (No; Yes; Refused to answer; Don't know) care and related services at Transportation data also captured in the following questions: least once in the preceding A6 What was the main reason you did not go to a doctor, nurse, or 12 months other health care worker for HIV medical care within 3 months of testing positive for HIV? ("Unable to get transportation" is a response option) A7a What was the main reason you didn't visit a doctor, nurse, or other health care worker for HIV medical care during the past 6 months? ("Unable to get transportation" is a response option) NOTE: Although the indicators for clinical HIV care and mental health and substance abuse recommended in the committee's first report are targeted toward adults, they apply to adolescents (13 years) as well (IOM, 2012). The Medical Monitoring Project does not include children or adolescents; the population of inference is individuals with HIV 18 who are in care. 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.