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Data Sources for the At-Risk Community-Dwelling Patient Population

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2.3. Psychosocial Needs

This group includes those individuals who have mental illness, cognitive impairment, or developmental delays and live independently in the community with the support of a treatment or day/mental health program or (nearly) full-time caretaker.

NHIS—D includes data about people who receive services from adult day care or day activity centers. Services include meals, counseling, nursing, monitoring of medications, and personal care. There are also items about outpatient mental health services, the number of months that outpatient mental health services were received, the number of visits that were made on an emergency basis, and any support provided by a community mental health program.

The American Community Survey includes information on individuals in households who have difficulty learning, remembering, or concentrating. When combined with the receipt of SSI, this information may be an indication of the severity of the condition.

MassCHIP does not capture information on services utilized, but does collect information about the number of days of poor mental health in the past 30 days and the number of days of sad, blue, or depressed mood in the past 30 days. These items are probably too broad to be good indicators of severe mental illness.

Medicaid claims may contain information about programs in the community that support individuals who have psychosocial needs, if such services are covered by a given State's Medicaid program.

Table 15 shows data availability for psychosocial needs.

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2.4. Children

Children who have significant functional deficits or complex medical care and/or psychosocial needs present a slightly different situation during an MCE. These children would most certainly be under the care and supervision of a parent or adult at all times; thus, they are not as vulnerable to lack of a caregiver. However, those children who depend on equipment or medical supplies and electricity would be subject to some of the same issues as their adult counterparts. Investigators sought databases or surveys that would show the number of children who depend on medical equipment or supplies.

The National Survey of Children's Health (2007) provides information on children who need/use more medical care or mental health or educational services, or are limited in activities compared with other children of the same age. It identifies the underlying condition in general terms (e.g., bone, joint or muscle problems or brain injury or concussion), but does not indicate the types of equipment/supplies the child may need.

The National Survey of Children with Special Health Care Needs (2005-2006) provides information on the demographic characteristics of children who have special health care needs and the types of health and support services needed. The survey is conducted through telephone interviews in all 50 States and the District of Columbia. Telephone numbers are dialed at random to identify households with children and then the households are screened for children who have special health care needs (at least 3,000 households per State are screened). Data are available through an online Data Resource Center. Information on the child's condition and need for DME (e.g., wheelchair, hospital bed, oxygen tank, and pressure machine), medical supplies, mobility aids, and substance abuse treatment or counseling is supplied. Information on the type of medical equipment is not specific to those children who depend on medical technology, but includes children who used any of the listed medical equipment/supplies at any point in the past 12 months.

In 1987 and 1990, a statewide census of children who depend on medical technology was conducted in Massachusetts to determine the size, pattern of distribution, and trends in the population of children who are assisted by medical technology (Palfrey et al., 1991 and 1994). An unduplicated count of children ages 3 months to 18 years who used one or more of the following devices was obtained from medical and educational sources: tracheostomy, respirator, oxygen, suctioning, gastrostomy, jejunal or nasogastric feedings, colostomies, urethral catheterization, ureteral diversion, intravenous access, or dialysis. Using the 1990 U.S. Census figures, the researchers were able to estimate the prevalence rate of technological dependency for children in this age range and apply this rate to the entire U.S. child population.

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2.5. Summary

The information from this report is summarized in the table below. For each of the at-risk population groups, the data sources were reviewed to determine which contain the needed information, are most current, and are most readily available. Table 16 shows the various data sources and the groups in the at-risk population that they adequately cover.

In some cases, more than one data source is highlighted. In these cases, there would likely be a problem with "double counting" if multiple data sources were used to create community-level estimates. For example, Medicare claims and OASIS have a considerable degree of overlap; we could not simply add the results obtained from these two data sources. For some data sets the degree of overlap can be estimated, but this is not always the case. For example, it may be difficult to estimate the overlap between NHIS data and OASIS data.

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2.6. Discussion

After reviewing all the data sources, investigators were able to locate one or more for each of the at-risk population groups of concern. However, there does not appear to be one ideal data source for the information the investigators were seeking, and some of the better data sources omit children. Neither the public use files nor those that require a DUA with CMS (as well as analytic file construction and/or payment of a fee) could provide information on the at-risk population across all provider and patient types.

The public use files (i.e., MassCHIP, SAMHDA, United States Renal Data System, American Community Survey), although sufficient for certain narrow categories (e.g., dialysis, methadone use, HIV/AIDS patients), do not contain a broad enough picture of the other subgroups. OASIS provides comparable information on many of the at-risk categories of interest, but the population is limited to only those patients who currently receive home care-an incidence rather than prevalence measure. The National Home and Hospice Care Survey focuses on the services that home health agencies and hospice agencies provide and could not be used as a reliable source for information on the population of patients receiving home care services.

Medicaid and Medicare claims cover a large population and are not limited to those who receive home care services. They are, however, limited to low-income individuals or the elderly/disabled populations, and do not contain information about most children, or about those whose care is paid for by private insurance, self-pay, or is uncompensated.

To understand the size of the populations of concern, and how estimates could be assembled from the data sources described above, estimates of the at-risk population for one sample city, Worcester, Massachusetts, is constructed in Table 17.

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