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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.
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
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
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.
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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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:
(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
- 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.
- National Home and Hospice Care Survey.
- Medicare claims.
- Medicaid claims.
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
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.
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
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
Table 7 shows data availability for insulin-dependent diabetes.
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
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
Table 10 shows data availability for specialized
Schedule II Controlled Substances
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
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.,
Medicare and Medicaid claims contain information about
medications, including Schedule II controlled substances.
Table 11 shows data availability for Schedule II controlled substances.
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
Table 12 shows data availability for HIV/AIDS.
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.
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
Table 14 shows data availability for early discharge.
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