Use of state cancer surveillance data to estimate the cancer burden in disaster-affected areas--Hurricane Katrina, 2005

Abstract
The objective of this study was to estimate the burden of cancer in counties affected by Hurricane Katrina using population-based cancer registry data, and to discuss issues related to cancer patients who have been displaced by disasters. The cancer burden was assessed in 75 counties in Louisiana, Alabama, and Mississippi that were designated by the Federal Emergency Management Agency as eligible for individual and public assistance. Data from the National Program of Cancer Registries were used to determine three-year average annual age-adjusted incidence rates and case counts during the diagnosis years 2000-2002 for Louisiana and Alabama. Expected rates and counts for the most-affected counties in Mississippi were estimated by direct, age-specific calculation using the 2000-2002 county level populations and the site-, sex-, race-, and age-specific cancer incidence rates for Louisiana. An estimated 23,549 persons with a new diagnosis of cancer in the past year resided in the disaster-affected counties. Fifty-eight percent of the cases were cancers of the lung/bronchus, colon/rectum, female breast, and prostate. Eleven of the top 15 cancer sites by sex and black/white race in disaster counties had >50% of cases diagnosed at the regional or distant stage. Sizable populations of persons with a recent cancer diagnosis were potentially displaced by Hurricane Katrina. Cancer patients required special attention to access records in order to confirm diagnosis and staging, minimize disruption in treatment, and ensure coverage of care. Cancer registry data can be used to provide disaster planners and clinicians with estimates of the number of cancer patients, many of whom may be undergoing active treatment.

Figures

Prehospital and Disaster Medicine http://pdm.medicine.wisc.edu Vol. 22, No. 4
ORIGINAL RESEARCH
1. Division of Cancer Prevention and
Control, National Centers for Chronic
Disease Prevention and Health
Promotion, Centers for Disease Control
and P
revention, Atlanta, Georgia USA
2. Louisiana Tumor Registry, New Orleans,
Louisiana USA
3. Mississippi Cancer Registry, Jackson,
Mississippi USA
4. Alabama Statewide Cancer Registry,
Montgomery, Alabama USA
Correspondence:
Djenaba A. Joseph, MD, MPH,
Centers for Disease Control and Prevention
Division of Cancer Prevention and Control,
4770 Buford Highway (K-55)
Atlanta, Georgia 30341 USA
E-mail: dvk5@cdc.gov.
The findings and conclusions in this report are
those of the authors and do not necessarily represent
the views of the Centers for Disease Control and
Prevention.
Keywords: Alabama; cancer; cancer
epidemiolog
y; disaster; disaster response;
Hurr
icane K
atr
ina;
Louisiana; Mississippi;
neoplasm; registries
Abbr
eviations:
ASCO = American Society for Clinical
Oncology
FEMA = Federal Emergency Management
Ag
enc
y
NAACCR = North American Association of
Centr
al Cancer Registr
ies
NCI = National Cancer Institute
NPCR = National Program of Cancer
Registries
SE
E
R = S
ur
v
eil
lance, Epidemiology and End
Results
SSS1977 = SEER Summary Stage 1977
SSS2000 = SEER Summary Stage 2000
Use of State Cancer Surveillance Data to
Estimate the Cancer Burden in Disaster-
Affected Areas—Hurricane Katrina, 2005
Djenaba A. Joseph, MD, MPH;
1
Phyllis A. Wingo, PhD;
1
Jessica B. King, MPH;
1
Lori A. Pollack, MD, MPH;
1
Lisa C. Richardson, MD;
1
Xiaocheng Wu, MD;
2
Vivien Chen, PhD;
2
Harland D. Austin, PhD;
1
Deirdre Rogers, MS;
3
Janice Cook, MS
4
Introduction
On the morning of 29 August 2005, Hurricane Katrina struck the Gulf Coast
of the United States with maximum wind speeds estimated at 140 miles per
hour
,
1
pr
oducing c
atastr
op
hic damage to parts of Louisiana, Mississippi, and
Alabama.
It resulted in 1,220 deaths and extensive structural damage
2
that
compromised public health surveillance. The Sphere Projects
Humanitarian
Charter and Minimum Standards in Disaster Response
, which aims to improve
the quality of assistance provided to people affected by disasters, describes the
man
y issues that must be considered when responding to a disaster of this
magnitude. The minimum standards address five key areas: (1) water supply
and sanitation; (2) nutrition; (3) food aid; (4) shelter; and (5) health services
with a focus on vulnerable populations (children, women, older persons, dis-
abled people
,
and those living with H
IV/AIDS). The Sphere Project recog-
Abstract
Purpose:
The objective of this study was to estimate the burden of cancer in
counties affected by Hurricane Katrina using population-based cancer reg-
istry data, and to discuss issues related to cancer patients who have been dis-
placed by disasters.
Methods: The cancer burden was assessed in 75 counties in Louisiana,
Alabama, and Mississippi that were designated by the Federal Emergency
Management Agency as eligible for individual and public assistance. Data
from the National Program of Cancer Registries were used to determine
three-year average annual age-adjusted incidence rates and case counts dur-
ing the diagnosis years 2000–2002 for Louisiana and Alabama. Expected
rates and counts for the most-affected counties in Mississippi were estimated
by direct, age-specific calculation using the 2000–2002 county level populations
and the site-, sex-, race-, and age-specific cancer incidence rates for Louisiana.
Results: An estimated 23,549 persons with a new diagnosis of cancer in the
past year resided in the disaster-affected counties. Fifty-eight percent of the
cases were cancers of the lung/bronchus, colon/rectum, female breast, and
prostate. Eleven of the top 15 cancer sites by sex and black/white race in dis-
aster counties had >50% of cases diagnosed at the regional or distant stage.
Conclusions: Sizable populations of persons with a recent cancer diagnosis
were potentially displaced by Hurricane Katrina. Cancer patients required
special attention to access recor
ds in order to confirm diagnosis and staging,
minimize disruption in treatment, and ensure coverage of care. Cancer reg-
istry data can be used to provide disaster planners and clinicians with estimates of
the number of cancer patients, many of whom may be undergoing active treatment.
Joseph DA, Wingo PA, King JB, Pollack LA, Richardson LC, Wu X, Chen
V, Austin HD, Rogers D, Cook J: Use of state cancer surveillance data to esti-
mate the cancer burden in disaster-affected areas—Hurricane Katrina, 2005.
Prehosp Disast Med 2007;22(4):282–290.
Receiv
ed:
08 S
eptember 2006
Accepted: 19 September 2006
Web publication:
JulyAugust 2007 http://pdm.medicine.wisc.edu Prehospital and Disaster Medicine
Joseph, Wingo, King, et al 283
part of the National Program of Cancer Registries
(NPCR) of the Centers for Disease Control and
Prevention, and the National Cancer Institute’s (NCI)
Surveillance, Epidemiology, and End Results (SEER)
Program.
9–11
The quality of the cancer incidence data
varies by registry.
12–13
For this study, the following criteria
were used to assess cancer registry data quality: (1) case
ascertainment was at least 90% complete; (2) at least 97%
of cases passed a standard set of computerized edits; (3) <5%
of cases were reported by death certificate only; (4) <3% of
cases were missing information on gender; (5) <5% of cases
were missing information on race; and (6) <3% of cases
were missing information on age.
10
Because the geograph-
ic ar
eas most aff
ected b
y Hurr
icane Katrina are defined
along county or parish boundaries (Figure 1),
14
data for
this study have had <3% of the cases missing information
about county or parish of residence at diagnosis. Disaster
counties in Alabama and Mississippi and parishes in
L
ouisiana were defined as those that were eligible for indi-
vidual and public assistance as deter
mined b
y FE
MA,
as of
23 September 2005.
14
These counties and parishes are
referred subsequently to as the disaster counties and parishes.
The c
ancer incidence data f
r
om Alabama and Louisiana
met the quality criteria for the diagnosis years 2000–2002, as
submitted by 31 January 2005—the most recent data available.
Because cancer incidence data from Mississippi did not achieve
the high-quality data criteria, 2000–2002 site-, sex-, and age-
specific cancer incidence rates from Louisiana were applied to
Mississippi count
y-le
v
el populatio
n data w
er
e applied to esti-
mate counts and crude cancer incidence rates for Mississippi.
15
nized that, in addition to addressing the control of com-
municable diseases and injuries, responders must pay spe-
cific attention to mental health, reproductive needs, and
chronic diseases.
3
Patients with cancer were an important
population of people with chronic disease at risk of being
adversely impacted by Katrina.
Although the public health infrastructure and surveil-
lance systems were disrupted in the aftermath of Hurricane
Katrina, post-event surveillance systems that were func-
tional indicated that the majority of visits to healthcare
fa
cilities w
ere for medication refills, oral health, and chronic
diseases.
4–6
In a recent household survey of families living in
Federal Emergency Management Agency (FEMA)-subsi-
dized community settings, 4.8% of adults reported a diag-
nosis of cancer.
7
Reports from oncologists in Louisiana
and Texas noted the problems encountered while caring for
c
ancer patients f
ol
lo
wing the Hurr
icane, including their
inability to access medical records and patients’ inability to
relay the type of cancer they were afflicted with and treat-
ment r
eceived for their illness.
8
Cancer incidence data from population-based registries
w
er
e used to describe the pre-Katrina burden of cancer in
the Hurricane-affected counties. This paper suggests how
population-based cancer registry data can be used to
respond to and plan for the management of cancer patients
displaced by disasters.
Methods
Information on newly diagnosed cancer cases in the United
States is based on data collected by states and territories as
Figure 1—Average annual counts of cancer cases for people residing in counties most affected by Hurricane Katrina
1
Alabama, Mississippi
2
, and Louisiana, 2000–2002
1
Counties designated by FEMA as eligible for individual and public assistance as of 23 September 2005.
2
Mississippi counts were estimated by applying annual site-, sex-, race-, and age-specific rates from Louisiana to the
Mississippi county-level populations.
J
oseph © 2007 Prehospital and Disaster Medicine
Prehospital and Disaster Medicine
htt
p://p
dm.medicine.wisc.edu Vol. 22, No. 4
284 Use of State Cancer Surveillance Data
Table 1—Average annual cancer incidence rates and counts for persons residing in counties most affected by Katrina (Alabama, Louisiana, and Mississippi,
2000–2002; yo - years old)
1
County designated by the Federal Emergency Management Agency as eligible for Individual and Public Assistance as of 23 September 2005.
2
Mississippi rates
and counts are estimated using site-, sex-, race-, and age-specific Louisiana rates and Mississippi populations.
3
Rates are per 100,000 population.
4
Rates are
age-adjusted to the 2000 US standard population (19 age groups—Census P25-1130).
5
Average annual counts may not sum to total due to rounding.
6
US rates are based on data from 43 cancer registries that met high quality data criteria and covered 90% of the US population: Alabama, Alaska, Arizona,
California, Colorado, Connecticut, Delaware, Florida, Georgia, Hawaii, Idaho, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maine, Maryland,
Massachusetts, Michigan, Minnesota, Missouri, Montana, Nebraska, Nevada, New Hampshire, New Jersey, New Mexico, New York, Ohio, Oklahoma, Oregon,
Pennsylvania, Rhode Island, South Carolina, Texas, Utah, Vermont, Washington, West Virginia, Wisconsin, and the District of Columbia. These registries
participate in the National Program of Cancer Registries of the Centers for Disease Control and Prevention and/or the Surveillance, Epidemiology,
and End Results Program of the National Cancer Institute.
Joseph © 2007 Prehospital and Disaster Medicine
JulyAugust 2007 http://pdm.medicine.wisc.edu Prehospital and Disaster Medicine
Joseph, Wingo, King, et al 285
For the United States data, aggregate registry data that
met the same quality criteria for the diagnosis years
2000–2002, as submitted by 31 January 2005 from NPCR
registries and as submitted by 01 November 2004 from
SEER registries were used. Combined, these data covered
93% of the US population. Data included in this report
refer to invasive cancer, with the exception of bladder can-
cers, which include
in situ cancers. Race data are provided
only for blacks and whites.
Three-year average annual age-adjusted incidence rates
were calculated using SEER*Stat software and are
expressed per 100,000 population.
16
The average annual
incidence rates for Alabama and Louisiana are age-adjust-
ed to the 2000 US standard million population by five-year
age groups,
1
5,17
the rates for Mississippi are estimated
average annual crude rates. Three-year average annual case
counts also are presented. Rates and counts were averaged
over three years to promote stability because of the small
geographic areas presented.
Cancers diagnosed in 2000 were staged using SEER
Summary Stage 1977 (SSS1977) and cancers diagnosed in
2001–2002 were staged using SEER Summary Stage 2000
(SSS2000). For this report, these data are combined to pro-
duce three-year annual averages for 2000–2002. Based on
an analysis performed by the North American Association
of Central Cancer Registries (NAACCR) to assess the
impact of the changes from SSS1977 to SSS2000, a stage
shift from local (8.8% decrease from SSS1977 to SSS2000)
to regional (9.4% increase from SSS1977 to SSS2000) dis-
ease was noted for prostate cancer.
18
Breast cancer was
excluded from the assessment performed by NAACCR,
and staging changes for other cancers did not impact the
results obtained in this analysis.
Results
Before Hurricane Katrina, an average of 23,549 people
residing in the disaster counties of Alabama, Louisiana, and
Mississippi had received a new diagnosis of cancer during
the preceding 12 months (Figure 1). There were 10 disas-
ter counties in Alabama (total population of 835,186), 43
disaster counties in Mississippi (total population of
1,800,200),
and 22 disaster par
ishes in L
ouisiana (total
population of 2,526,468).
19
There were more new diag-
noses among males (54%) than females, and among whites
(72%) than bla
c
ks. Age-adjusted rates showed similar pat-
terns as the counts except that black cancer patients had higher
ag
e-a
djusted c
ancer incidence rates than white cancer patients.
In the entire state of Alabama and in Alabama disaster
counties alone, cancer incidence rates tended to be lower
than rates for the US for all cancer sites combined, regard-
less of g
ender or bla
c
k/white r
a
ce (Table 1). For the state of
Louisiana and for Louisiana disaster parishes, cancer inci-
dence rates were similar to US rates. The exceptions were
higher r
ates among males for all cancer sites combined,
including lung, colorectal, and prostate cancer. Age-adjust-
ed cancer incidence r
ates for people residing in the disaster
counties in Mississippi were not presented because high-
quality data were not available from the Mississippi
Statewide Cancer Registry.
Fifty-eight percent of the 23,549 cancer cases diagnosed
in disaster counties during the 12 months before Hurricane
Katrina were cancers of the lung and bronchus, colon and
rectum, female breast, or prostate. Most of the lung cancer
patients were male (60%), while the colorectal cancer
patients were more evenly distributed by sex (52% male,
48% female). Regardless of cancer site, the percent distribu-
tion of cases by black/white race reflected the racial compo-
sition of the underlying populations: 26–31% of the cancer
patients were black.
17
Fifty-six percent of the newly diagnosed patients resid-
ing in the disaster counties were among people aged 65
years and older at diagnosis. About 3,531 patients (15%)
were at least 80 years old (data not shown). Of those can-
cer patients >80 years of age, 556 were newly diagnosed
with cancer of the lung and bronchus, 601 with colorectal
cancer, 402 women with breast cancer, and 427 men with
prostate cancer.
Patients diagnosed with cancer in the 12 months pre-
ceding Katrina were likely still receiving treatment. Those
with late-stage disease may have been receiving palliative
care.The pre-Katrina stage distributions of the top 15 can-
cer sites by sex and black/white race for the disaster coun-
ties and parishes in Alabama and Louisiana are presented
in Tables 2 and 3. In general, the percent of cases diagnosed
at the regional or distant stage was >50% for 11 of the 15
cancers listed. The percent of cases staged as regional or
distant was higher among black patients than white
patients, regardless of geographic area. This disparity was
more pronounced in Louisiana disaster parishes (Table 3)
than in Alabama disaster counties (Table 2).
Discussion
The estimated 23,549 people with a recent cancer diagno-
sis, identified in this paper using cancer registry data, rep-
resent a sizable population of people potentially displaced
by Hurricane Katrina with special needs and concerns
beyond those typically encountered following a disaster.
Assessment of the health outcomes related to previous hur-
ricanes in the US confirm the need to plan for management
of health services for vulnerable populations—children,
older people
,
pr
egnant w
o
men,
and people with chronic
diseases and disabilities.
3,20–22
For example, the rapid
assessment of the needs and health status of older adults
af
ter the 2004 landfal
l of Hurricane Charley in Florida
noted disruptions in quality of life status, and medical care
f
or pr
e-existing co
nditions and, as such, provided insights
to plan care for cancer patients and people with other
chronic conditions.
20
Across the three counties most
affected by Hurricane Charley, a large percentage of house-
holds with at least o
ne older a
dult r
epor
ted that the hurr
i-
cane had exacerbated (24–32%), or prevented normal care
(18–28%) for a pre-existing, physician-diagnosed medical
co
ndition. Loss of power can preclude use of medical sup-
plies or equipment that requires electricity to operate.
Deaths c
an r
esult from the exacerbation of previously
undiagnosed cardiac conditions and pre-existing condi-
tions, such as heart disease, diabetes, chronic obstructive
pulmonary disease, and cancer.
21–23
Given that a standard-
Prehospital and Disaster Medicine http://pdm.medicine.wisc.edu Vol. 22, No. 4
286 Use of State Cancer Surveillance Data
Table 2The top 15 cancer incidence sites by gender and black/white race, Alabama disaster counties*, 2000–2002
1
Site listing is determined by rankings for all races combined.
2
Rates are per 100,000 population, and are age-adjusted to the 2000 US standard population (19
age groups—Census P25-1130).
3
Average annual counts may not sum to total due to rounding. ^Counts, rates and percent distributions are suppressed if <6
average annual cases were reported in the specific sex-, race-specific category. For specified sex and race, the incidence of this site was not in the top fifteen
Joseph © 2007 Prehospital and Disaster Medicine
JulyAugust 2007 http://pdm.medicine.wisc.edu Prehospital and Disaster Medicine
Joseph, Wingo, King, et al 287
ized definition of hurricane-related death does not exist,
and that medical examiners often decide whether a death
was the result of a disaster caused by a naturally occurring
hazard, such as a hurricane,
2
3
deaths related to chronic dis-
ease exacerbations or an inability to obtain needed care are
not fully captured.
In addition to the issues outlined above, cancer survivors
have specific needs that will vary by time since the disaster,
and by time since their last treatment. In the first days fol-
lowing a disaster-producing event, attention should focus
on potentially immuno-compromised patients such as
those with acute leukemia or those who recently have
received chemotherapy known to suppress blood cell
counts. Precautions must be taken to minimize opportunis-
tic infections. Therefore, crowded settings, such as shelters,
should be configured to support infection control require-
ments. Cancer patients who need pain management also
require prompt attention, because difficulty in obtaining
controlled substances may lead to under-treatment of pain
and possible withdrawal syndromes.
In the first few weeks following the hurricane, all possi-
ble efforts should be made to verify the cancer site, stage,
and treatment plan and to resume treatment quickly.
Ideally, cancer patients should know, or carry with them,
information about their diagnosis and treatment history,
but often they do not.
8
Medical facilities and records may
have been destroyed, and contact with patients’ oncologists
may be impossible because of closed offices and downed
communication systems (telephone and Internet). Copies
of any medical records and imaging studies obtained after
the disaster should be given to the patient to foster conti-
nuity of care, since patients may relocate multiple times.
Patients receiving radiation therapy will need to resume
therapy quickly, since lapses in radiation therapy have been
associated with adverse outcomes and cancer cells may
become resistant to radiation therapy if treatment is inter-
rupted.
24
Chemotherapy often is given every 3–4 weeks, so
it will be important to determine the expected date of the
upcoming cycle.
Concurrent with the coordination of care on an individ-
ual level, public health and professional organizations can
de
v
elop a database to tr
a
c
k the loc
ation and capacity of
cancer-related providers and facilities that are able to
accept displaced patients. Insurance companies and gov-
er
nment health pr
ograms also should be approached to
define strategies and policies to ensure reimbursement for
needed ser
vices.
P
atients should not have to delay seeking
care because of concerns about financial coverage. Cancer
patients who have insurance and are of a high socioeco-
nomic status may have been able to relocate before the
stor
m and r
esume c
ar
e at a ne
w institution more easily, but
patients who were not able to evacuate before the storm
may have been without financial means or insurance. For
example
, patients who received care at the Medical Center
of Louisiana in New Orleans (Charity Hospital) likely did
not have insur
ance and may have needed assistance finding
free or subsidized care at a new institution.
25
A survey of
evacuees in Houston evacuation centers indicated that 54%
of the non-elderly were without health insurance. Two-
thirds reported that their main source of health care before
the disaster was a hospital or clinic, and of these, 62% relied
upon Charity Hospital for their care.
26
In the months after a disaster, when the immediate and
short-term needs of those receiving chemotherapy and
radiation or awaiting surgery for cancer have been
addressed, the focus should shift to establishing plans for
long-term follow-up care. Follow-up should include a
review of the current cancer care plan, plans for appropri-
ate screening and prevention, and assessment of psychoso-
cial and financial concerns to provide adequate referrals for
people affected by the disaster. Within a year of the origi-
nal disaster, health system researchers should evaluate the
distribution of care among displaced cancer patients to
learn how to improve care in the event of future disasters.
In addition, cancer registries should review case-sharing
agreements to ensure information concerning cancer cases
is captured without duplication.
Professional societies and cancer registries have provid-
ed valuable support for the needs of displaced cancer
patients. For example, the American Society for
Therapeutic Radiation and Oncology created a Website
where contact information is listed for radiation oncolo-
gists from across the country who have volunteered to care
for patients displaced by Katrina.
27
Similarly, the American
Society for Clinical Oncology (ASCO) established a
Website for locating treating oncologists, cancer centers,
and hospitals.
28–29
Working collaboratively with ASCO,
NCI’s nationwide, toll-free Cancer Information Service
and Web chat service, LiveHelp, were available for dis-
placed cancer patients and oncologists to find information
about how to contact each other, to provide contact infor-
mation for oncology practices that are available to accept
patients displaced by the hurricane, and to answer other
questions.
29-30
The American Cancer Society provided
guidance about future steps for cancer patients (and their
families) whose treatment was interrupted by Katrina and
the hurricane that followed it, Rita.
31
In addition to the national cancer organizations, popu-
lation-based cancer registries have valuable information
that can be used to facilitate rapid restoration of treat-
ment.
10
F
or example
,
o
ne of the r
egio
nal offices of the
Louisiana Tumor Registry located outside the disaster
impact area was contacted to obtain cancer and treatment
inf
or
mation on evacuees.
25
Bec
ause L
ouisiana has a single
statewide database that is accessible to all staff, the registry
was able to r
espo
nd to the r
equest by providing an abstract
on cancer diagnosis, tumor stage, and surgical treatment to
physicians after patient consent for data release was obtained.
Limit
ations
Data limitations raise several cautions to consider when
interpreting the findings of this study. First, even though
NPCR has ma
de significant progress since the passage of
the Cancer Registries Amendment Act in 1992, a few
state
wide
, population-based cancer registries, including
that for Mississippi, have not achieved the NPCR stan-
dards for completeness,timeliness,and quality.
9
Consequently,
Louisiana cancer incidence data were used to estimate the
Prehospital and Disaster Medicine http://pdm.medicine.wisc.edu Vol. 22, No. 4
288 Use of State Cancer Surveillance Data
Joseph © 2007 Prehospital and Disaster Medicine
Table 3The top 15 cancer incidence sites by gender and black/white race, Louisiana disaster parishes*, 2000–2002
*County designated by FEMA as eligible for Individual and Public Assistance as of September 23, 2005.
1
Site listing is determined by rankings for all races
combined.
2
Rates are per 100,000 population, and are age-adjusted to the 2000 US standard population (19 age groups—Census P25-1130). ^ Counts, rates and
percent distributions are suppressed if fewer than 6 average annual cases were reported in the specific sex-, race-specific category. For specified sex and race, the
incidence of this site was not in the top fifteen.
JulyAugust 2007 http://pdm.medicine.wisc.edu Prehospital and Disaster Medicine
Joseph, Wingo, King, et al 289
burden of cancer in Mississippi for this analysis. If
Louisiana data do not accurately reflect the true occurrence
of cancer in Mississippi, then the data for Mississippi will
be biased. Mississippi data have since met the criteria for
2003 data and may be used in future studies. Second, insuf-
ficient available resources and the newness of many NPCR
registries preclude estimating survival and prevalence at
this time. Third, the use of available pre-Katrina cancer
registry data do not directly address the challenges for con-
tinuity of care for evacuees who have relocated to other
states or for the health systems in states in which the evac-
uees were sent.
Conclusions
Hurricane Katrina was unprecedented in the scope of the
damage caused by its aftermath. Lessons learned from this
disaster allow for better preparation for future disasters,
particularly in regard to the needs of cancer patients.
1. Specific triage guidelines can be developed to assist
evacuation centers in identifying and appropriately
referring cancer patients;
2. Physicians and medical systems should be encour-
aged to establish electronic medical records with off-
site data backup to ease access to patient information
from distant locations. Patients should be encour-
aged strongly to carry records of their diagnosis and
treatment at all times. Patients also should be given
information about what to do regarding their treat-
ment in the event of a disaster, as well as contact
information for national organizations to assist them
in locating new providers if needed;
3. Websites and telephone hotlines that were created by
several national cancer organizations should be
maintained;
4. Cancer patients should be included in post-event
surveillance systems;
5. A standard definition of death related to disasters
caused by naturally occurring hazards should be
adopted to fully capture deaths caused by exacerba-
tion of chronic diseases; and
6. Population-based cancer registries should be pre-
pared to provide both individual and population-
level information in the event of a disaster. Individual
data can be used to respond to specific clinician
requests, as was the case in Louisiana, although can-
cer registries may not have information on cancer
patients diagnosed in the previous six months
because of the time required to abstract cases.
Population data can be used to provide at least
approximate estimates of the number of cancer
patients potentially displaced by a disaster, what
types of cancer they are likely to have, and how many
may be undergoing active treatment.
Taken together, this information could be valuable in
quickly re-establishing care for cancer patients affected by
a disaster.
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    • "While identifying and implementing tailored recruitment strategies are critical and underdeveloped, intentional involvement of community leaders and other community based participatory research strategies are also much needed areas for development with promise for reducing disparities in research participation. Though less commonly used, population-based registries are also used for study recruitment and are most often used to recruit research study participants that share a common characteristic such as illness [25] [26] [27] [28] [29] [30] [31] [32] [33] [34] [35] [36] [37]. Less is known about the use of registries designed specifically to increase minority participation in research studies. "
    [Show abstract] [Hide abstract] ABSTRACT: Introduction: Prevention and treatment standards are based on evidence obtained in behavioral and clinical research. However, racial and ethnic minorities remain relatively absent from the science that develops these standards. While investigators have successfully recruited participants for individual studies using tailored recruitment methods, these strategies require considerable time and resources. Research registries, typically developed around a disease or condition, serve as a promising model for a targeted recruitment method to increase minority participation in health research. This study assessed the tailored recruitment methods used to populate a health research registry targeting African-American community members. Methods: We describe six recruitment methods applied between September 2004 and October 2008 to recruit members into a health research registry. Recruitment included direct (existing studies, public databases, community outreach) and indirect methods (radio, internet, and email) targeting the general population, local universities, and African American communities. We conducted retrospective analysis of the recruitment by method using descriptive statistics, frequencies, and chi-square statistics. Results: During the recruitment period, 608 individuals enrolled in the research registry. The majority of enrollees were African American, female, and in good health. Direct and indirect methods were identified as successful strategies for subgroups. Findings suggest significant associations between recruitment methods and age, presence of existing health condition, prior research participation, and motivation to join the registry. Conclusions: A health research registry can be a successful tool to increase minority awareness of research opportunities. Multi-pronged recruitment approaches are needed to reach diverse subpopulations.
    Full-text · Article · Jan 2013
    • "Without an accurate population count for each year between 2001 and 2008, and in the immediate period following the storm, the degree to which the elevated mortality is an artifact of population is not clear and requires further investigation. Despite this potential limitation, the presented evidence clearly indicates that the hurricanes had a measurable impact on mortality, consistent with studies that show an increase in mortality and chronic illness following Hurricane Katrina (Abramson et al. 2008; Joseph et al. 2009), albeit over a longer post-storm period. The results of the present study suggest that the period of elevated mortality (across all types) persisted well after the storm, with an average of 54 days (Table 2). "
    [Show abstract] [Hide abstract] ABSTRACT: Previous studies have shown that natural disasters, and hurricanes in particular, have led to more deaths than those usually documented in short post-storm surveys. Such indirect deaths, thought to be related to dietary, stress or pre-existing medical conditions, can exceed the number of direct deaths and may persist for weeks or even months beyond the event itself. In the present study, cumulative sum of deviations plots are used to quantify the number of direct and indirect deaths resulting from Hurricanes Charley, Frances, Ivan and Jeanne that made landfall in Florida in 2004. Results suggest that there was an elevated mortality for up to 2 months following each storm, resulting in a total of 624 direct and indirect deaths attributable to the storm. Trauma-related deaths that can be associated directly with the storm account for only ∼4% of the total storm-related mortality, while indirect mortality accounts for most storm-related deaths. Specifically, a large percentage of the elevated mortality was associated with heart (34%) and cancer-related deaths (19%), while diabetes (5%) and accident-related deaths (9%) account for a smaller but still significant percentage of the elevated mortality. The results further suggest that the elevated mortality was the result of additional deaths that would not have otherwise occurred within that 5 month period, and not simply a clustering of deaths that were inevitable between 1 August and 31 December 2004. The elevated mortality identified in this study is significantly greater than the official count of 31 direct and 113 indirect deaths resulting from the four hurricanes combined. This suggests a need for improved mortality counts and surveillance in order to better evaluate and identify effective prevention policies, and to identify preventable deaths.
    Full-text · Article · Oct 2010
  • Full-text · Article · Aug 2007
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