2. Summary of Data Availability

For each at-risk population subgroup, the available data sources were examined and the strengths and limitations of each were evaluated.

2.1. Functional Needs

The focus of this report is those patients who are non-ambulatory and who totally depend on others for feeding, bathing, dressing, and toileting. Non-ambulatory patients may be confined to a wheelchair or bedbound. The following data sources were examined:

• Outcome and Assessment Information Set.
• American Community Survey.
• National Health Interview Survey.
• Longitudinal Study of Aging.
• National Health Interview Survey—Disability.
• National Home and Hospice Care Survey.
• Massachusetts Community Health Information Profile (including the Behavioral Risk Factor Surveillance System for Massachusetts).
• Medicare and Medicaid claims.

Outcome and Assessment Information Set (OASIS). This database contains information about adults who receive home care services and specifies the activities of daily living (ADLs) with which these patients require assistance, such as bathing, dressing, toileting, transfers, ambulation/locomotion, and feeding. OASIS enrollment is completed upon admission/readmission (and every 60 days thereafter) for all patients older than 18 (excluding maternity patients) who receive skilled care from a Medicare- or Medicaid-certified home health agency. OASIS enrollment is not required for patients whose care is reimbursed by payers other than Medicare and Medicaid. OASIS data can be obtained by zip code to target a specific urban area for further study, and current data are only several months old. Data on ADL limitations can be paired with data on supportive assistance to target those individuals who have functional dependence and receive paid assistance or no assistance at all. A data user agreement (DUA) with the Centers for Medicare and Medicaid Services (CMS) is needed to use OASIS data. In addition, OASIS is limited to Medicare and Medicaid patients who currently receive home care from a certified home health agency. In that sense, OASIS could be considered as a source for incidence rather than prevalence estimates.

American Community Survey. Information on a physical disability (a condition that substantially limits one or more basic physical activities, such as walking, climbing stairs, reaching, lifting, or carrying) is collected from U.S. households through a survey administered by the U.S. Census Bureau. Each month, the survey is administered by mail, telephone, or personal visit to a sample of roughly 250,000 addresses in the United States and Puerto Rico, or 3 million addresses per year. Data are available annually for communities with a minimum population of 65,000, and for less populated areas the data is collected over 3 to 5 years. Data are publically available on the Census Bureau Web site (http://www.census.gov/acs/www/). Survey questions do not address the severity of the disability, but the data may be paired with data from supplemental security income (SSI) and disability pensions to provide an estimate of the number of individuals who have a severe physical disability.

National Health Interview Survey (NHIS). This interview-based survey covers functional status, such as the ability to walk, climb stairs, sit or stand for several hours, stoop, bend or kneel, reach up or grasp, and lift or carry 10 pounds). Census Bureau staff conducts interviews with a representative sample of households and non-institutional group quarters, covering the U.S. civilian non-institutional population. Interviews are conducted continuously throughout the year. The Household component collects demographic information on all of the individuals living in a particular sample house (dwelling). The Family component verifies and collects additional demographic information on each member of each family residing in the house. From each family, one sample adult and one sample child are randomly selected, and information on health topics is collected. The NHIS contains questions about members of the household who need help with personal care (such as eating, bathing, dressing, or getting around the house). The survey also includes a list of conditions that affect an individual's ability to perform certain activities. For example, NHIS data can identify the number of individuals who cannot walk, need assistance with personal care, or who have multiple sclerosis, muscular dystrophy, polio, quadriplegia, Parkinson's disease, or an amputation. There are no geographic indicators in the NHIS public use data files. A more complete data set that does include geographic indicators can be obtained from the Centers for Disease Control and Prevention (CDC), but the CDC requires the submission (and CDC approval) of a research proposal for using the data and payment of applicable fees. NHIS data can be used to generate prevalence estimates.

National Health Interview Survey Longitudinal Study of Aging. This NHIS-associated survey includes questions on functional ability similar to the standard NHIS, as well as questions about the frequency with which the respondent needs help with personal care, the amount of time the respondent stays in bed or a chair, or if the respondent is incontinent. There are also questions about community and social support, such as Meals on Wheels programs, and how often these services are used. Unfortunately, this study was originally conducted in 1984, with three follow-up interviews in 1986, 1988, and 1990, making the most recent data nearly 20 years old. The data are available on CD-ROM.

National Health Interview Survey—Disability (NHIS—D). This NHIS-associated survey contains the same information on ADLs as the NHIS, with additional information on ADLs that cannot be performed without help or special equipment. The survey covers the use of a special bed, hospital bed, wheelchair, or oxygen or special breathing equipment. It includes information on how often helpers are utilized and for how many hours per day, including services such as Meals on Wheels, in the past 12 months. The survey specifically asks respondents if there is someone who could take care of them for a few days or weeks if necessary. The most recent data available are from 1995. Like the other National Health Interview Surveys, no geographic information is available in the public use files. Accessing the files through the CDC requires the submission and approval of a research proposal and payment of applicable fees.

National Home and Hospice Care Survey. This survey is designed to collect descriptive information on home health and hospice agencies and their staff, services, and patients. It is conducted on a nationally representative sample of U.S. home health and hospice agencies that are Medicare- and/or Medicaid-certified or licensed by the State. The survey sample consists of about 1,800 agencies throughout the United States, with detailed data on up to 10 patients from each agency. The patient data, which are collected through in-person interviews with agency staff, include information on demographic characteristics, functional and health status, diagnoses, pain management, medical devices, services received, medications, cost, and sources of payment. Functional assistance information includes help with bathing, dressing, eating, transferring, walking, and toileting, as well as using a hospital bed, wheelchair (manual or motorized), and Meals on Wheels. The most recent public use data files are from 2007, and data are reported by U.S. Census regions and metropolitan statistical area (MSA) indicators.

Massachusetts Community Health Information Profile (MassCHIP). This online information service provides access to 36 data sources, with information on vital statistics, communicable diseases, sociodemographic indicators, public health program usage, and other health, education, and social services indicators. It contains information on general disability among Massachusetts adults who have been disabled for at least one year and whose disability limited activities, caused cognitive difficulties, or required the use of special equipment or help from others. The data are specific to the city of Worcester (the model urban area for this study), and the most current data are from 2007. The data, however, are not specific to particular areas of personal care (e.g., bathing, dressing, toileting, eating), but apply to disability in general. This is an unusual data set, and comparable data have probably not been assembled in this way in other States.

Medicare claims. Medicare claims contain information on the equipment, services, and medications provided to Medicare beneficiaries by suppliers of durable medical equipment (DME). Medicare beneficiaries are generally older than 65, have a disability, or have end-stage renal disease (ESRD), and the claims database contains information for this entire population (a sample can be drawn for research purposes). DME claims can be combined with hospital and outpatient claims or prescription drug plan claims that contain diagnostic codes to identify individuals who have disabling conditions and also use equipment such as wheelchairs, hospitals beds, or oxygen. DME claims are considered incidence rather than prevalence data, because after 12 to 36 months of rental (during which claims are submitted to Medicare) the equipment becomes the property of the patient and additional claims are not submitted. Data are person-specific but limited to the Medicare population. A DUA with CMS is required to access claims data. Analyzing Medicare claims over several years could yield both incidence and prevalence estimates.

Medicaid claims. Medicaid claims contain similar information about the equipment, services, and medications provided to low-income State residents who are eligible for Medicaid benefits, regardless of age. Individuals who are covered by Medicaid and the specific services and equipment that are covered will vary by State. Data are person-specific, but cannot easily be compared among States because of the substantial differences in Medicaid eligibility and benefits. DUAs with each State may be required to access claims data. Arrangements can be made to obtain claims data for research purposes. Analyzing Medicaid claims over several years could yield both incidence and prevalence estimates.

Table 3 shows data availability for functional dependence.

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2.2. Medical Needs

This category includes patients who have complex medical needs and depend on health care staff to administer treatments and/or medications or depend on various types of medical equipment and supplies. This category also includes those patients who would be discharged early from acute care hospitals in the case of an MCE to make room for those affected. These latter patients will likely need a cadre of services, such as frequent assessments of vital signs, lung and heart sounds, and wounds, as well as dressing changes, laboratory tests, and medication adjustments.

Specifically, patients with medical needs are those who require the following services:

• Dialysis (peritoneal or hemodialysis).
• Intravenous (IV) infusions (includes enteral feedings,TPN, chemotherapy infusions, IV antibiotics).
• Complex wound care (sterile dressing changes, wound vacuum assisted closure (VAC), chest tube, pleurovac).
• Insulin-dependent diabetics unable to self injections and have no trained caregiver.
• Urinary catheter or colostomy—patients dependent on others for assistance.
• Severe respiratory problems—individuals with COPD and/or asthma requiring the use of oxygen, nebulization, or other respiratory equipment (e.g., continuous positive airway pressure (CPAP)).
• Specialized Medical Equipment (e.g., Ventilator or Ventricular Assist Device (VAD)).
• Schedule II controlled substances (drug dependent).
• HIV/AIDS care patients.
• Terminal ill.
• Early discharges from acute care hospitals.

The following data sources were consulted:

• United States Renal Data System.
• OASIS.
• National Home and Hospice Care Survey.
• MassCHIP.
• NHIS.
• NHIS—D.
• SAMHDA.
• Medicare claims.
• Medicaid claims.

2.2.1. Medical Needs Subgroups and Data Sources

Dialysis

The United States Renal Data System (USRDS) collects incidence and prevalence data about all persons with ESRD who use peritoneal dialysis and hemodialysis, regardless of insurance type; data are available at the county level and online. Analyzing USRDS data over several years would yield both incidence and prevalence estimates.

Medicare and Medicaid claims could provide the same information for people eligible for these public insurance programs, but would require DUAs with CMS and each State, as well as analytic file construction.

Table 4 shows data availability for dialysis.

IVs and Infusions

OASIS collects data on therapies provided to adults in the home setting, including IV or infusion therapy, parenteral nutrition (e.g., total parenteral nutrition [TPN] or lipids), and enteral nutrition (e.g., nasogastric, gastrostomy, jejunostomy, or any other artificial entry into the alimentary canal), as well as the level of assistance that the patient requires. Patients who are coded as a "4" completely depend on someone else to manage all equipment. OASIS identifies patients who require IVs, but does not specify the purpose of the IV. To determine if the IV is for antibiotics or chemotherapy, data could be paired with OASIS items that capture diagnoses using ICD-9 codes.

The National Home and Hospice Care Survey identifies people who live alone (in a non-institutional setting) and use enteral feeding or IV therapy equipment or who receive IV therapy. Like OASIS, the survey does not specify the purpose of the IV (antibiotics or chemotherapy).

Medicare claims contain information about IV equipment and supplies and medications/infusions provided to all Medicare beneficiaries who are older than 65 or have a disability or ESRD.

Medicaid claims also contain information on IV equipment and supplies and medications provided to eligible low-income State residents, regardless of age. Individuals who are covered, as well as the specific services and equipment that is covered, varies by State. Data are person-specific, but cannot easily be compared among States.

Table 5 shows data availability for IVs and infusions.

Complex Wound Care

OASIS specifies the presence of a surgical wound and the status of the wound, but does not provide details about the care or equipment required.

Both Medicare and Medicaid claims contain information about the use of wound dressing supplies and equipment.

Table 6 shows data availability for complex wound care.

Insulin Injections

OASIS captures the need for injectable medications and indicates which adult patients totally depend on others (caregivers). Pairing this data with items containing the ICD-9 code for insulin-dependent diabetes could identify patients who have diabetes and who receive care from a certified home health agency.

NHIS captures information about respondents who are currently taking insulin, but does not determine the level of assistance required.

Medicare and Medicaid claims contain information on insulin syringes and insulin, but not whether individuals require assistance in using the insulin.

No other data sources provide information on this subgroup. MassCHIP data include the number of hospitalizations and emergency room (ER) visits related to diabetes in Massachusetts, which might be an indication of likelihood of future ER visits/hospitalization, especially during an MCE.

Table 7 shows data availability for insulin-dependent diabetes.

Urinary Catheter/Colostomy

OASIS collects information on the presence of a urinary catheter or colostomy for bowel elimination, and the level of assistance required for ADLs (which includes bowel/bladder along with bathing, dressing, toileting, eating/feeding, and other ADLs).

Both the NHIS—D and the National Home and Hospice Care Survey include information about indwelling catheters and colostomies and the need for help in caring for these devices.

Medicare and Medicaid claims contain information about catheters and colostomy equipment and supplies, but not the degree of assistance needed to manage this care.

Table 8 shows data availability for urinary catheter/colostomy.

Severe Respiratory Problems

This category includes individuals who depend on oxygen and/or require nebulization or use of other respiratory equipment.

OASIS collects information about adults in the care of home health agencies who use oxygen (continuous or intermittent), how well patients manage their inhalant/mist medications, and how well patients manage oxygen and other equipment. Patients may be rated in OASIS as unable to take medication or manage equipment unless assisted by someone else. ICD-9 diagnosis codes could be paired with data on the use of oxygen and equipment to identify individuals who have chronic obstructive pulmonary disease, asthma, or other related pulmonary conditions.

NHIS collects information on emphysema, asthma, and lung and breathing problems that interfere with ADLs.

The National Hospice and Home Care Survey identifies people who live alone (in an non-institutional setting) and use oxygen or other respiratory equipment.

MassCHIP contains data about asthma incidence among adults and asthma-related hospitalizations and ER visits.

Medicare and Medicaid claims contain information on oxygen and respiratory equipment supplies and inhalant medications, but do not capture the level of assistance that the individual needs.

Table 9 shows data availability for severe respiratory problems.

Specialized Medical Equipment

Some community-dwelling patients require specialized medical equipment, such as ventilators and ventricular assist devices (VADs).

OASIS contains one data element about adult use of a ventilator, either continually or at night.

NHIS—D includes items on the use of a ventilator and/or tracheostomy tube in the last 12 months and in the last 2 weeks.

Medicare and Medicaid claims contain information about DME, such as ventilators and VADs, that are currently being rented by the beneficiary.

Table 10 shows data availability for specialized medical equipment.

Schedule II Controlled Substances

Many community-dwelling individuals depend on narcotics, such as methadone, or pain relievers. Schedule II drugs (e.g., oxycodone, methadone, amphetamine, dextroamphetamine, and methylphenidate) have stricter prescribing rules. For a full list of Schedule II drugs, go to http://www.usdoj.gov/dea/pubs/scheduling.html.

Medications used for treating drug addiction withdrawal, such as buprenorphine, may be difficult to access during a disaster or emergency. For a description of these drugs, go to http://www.nida.nih.gov/PODAT/Evidence.html#Pharm.

Similarly, some antipsychotics and other psychiatric medications could be critical for individuals who are displaced during an MCE and depend on their medications (e.g., benzodiazepines).

Medicare and Medicaid claims contain information about medications, including Schedule II controlled substances.

Table 11 shows data availability for Schedule II controlled substances.

HIV/AIDS

Most HIV/AIDS patients who are stable and on medication will not likely present any special needs in the event of an MCE. Those who are ill will likely be captured in other categories (i.e., terminal illness or functional dependence). However, ready access to complex and costly medications is critical for these patients, and many community pharmacies do not stock these particular medications. In the event that these patients need to be relocated to a shelter, they may be concerned about delay in getting their medications and seek help in the ER.

MassCHIP is one data source that provides data on new and existing HIV/AIDS cases. Medicare and Medicaid claims could be used to capture HIV/AIDS medications.

Table 12 shows data availability for HIV/AIDS.

Terminal Illness

Patients who receive hospice care or who have less than 6 months to live may have medication needs (especially pain medications) and require assistance with ADLs. These patients may not be able to continue living at home during an MCE if their hospice services and/or medications are delayed or disrupted. If these patients are displaced from their homes, they will not likely be appropriate candidates for a general shelter or even a special needs shelter.

OASIS contains a data item on life expectancy and another item that indicates intractable pain.

The National Hospice and Home Care Survey collects data on hospice services provided by an outside agency. These data could be paired with data on the primary caregiver to show whether or not someone in the home is able to provide care.

Medicare and Medicaid claims could be used to capture the use of hospital beds, medications, and any other equipment or supplies, but it is not possible to determine if these medications and supplies are being used by people who are terminally ill. Medicare data indicate whether a beneficiary receives hospice services, but most people who use hospice care do so only in the last days or weeks of life.

Table 13 shows data availability for terminal illness.

Early Discharge

During a disaster, hospitals may try to discharge patients who can manage at home or in other levels of care in order to make room for patients who require tertiary care related to the MCE. It is difficult to evaluate a data set for its ability to provide data on a hypothetical situation. Using literature on "reverse triage," investigators formulated a description of the type of patient who is a candidate for early discharge. Kelon et al., (2006) describes a classification system that consists of five categories, in which patients are evaluated on the basis of their risk of a consequential medical event. Patients in low-risk categories are discharged home or to a low-acuity alternate facility; moderate-risk patients are not deemed safe to return home, but can be discharged to a moderate-acuity facility. Patients in high-risk categories can be discharged only to another high-acuity facility or not moved at all. Patients who have little hope of recovery can also be discharged in order to make beds available for those more likely to survive.

In evaluating data sources, investigators considered the needs of a "typical" post-operative patient; that is, someone who would likely require IV antibiotics and pain medication, have a wound with or without drains and tubes, and require monitoring and dressing changes, frequent vital sign assessment, daily laboratory tests, and frequent medication adjustments.

OASIS is the only data set that can provide a portion of the data elements required to identify such patients, and its data only apply to adults who receive services from a Medicare/Medicaid-certified home health agency and whose care is paid for by Medicare or Medicaid. OASIS contains data elements about recent hospital discharge, severity ratings for diagnoses, and changes in medical or treatment regimens in the past 14 days. It does not capture the frequency of nursing assessments, changes to medications, or other procedures based on nurse assessments or laboratory test results.

Medicare and Medicaid claims could be used to identify patients who require IVs, medications, dressing supplies, oxygen equipment, or laboratory tests. Many of these items, however, will be captured in other categories as well. Only laboratory tests are likely be captured only by Medicare and Medicaid claims.

Table 14 shows data availability for early discharge.

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