CHATS_ FAQs Attachment_C_revised_02272012_clean with OS edits_NCEH_4May12

CHATS_ FAQs Attachment_C_revised_02272012_clean with OS edits_NCEH_4May12.docx

Children's Health after the Storms (CHATS)

CHATS_ FAQs Attachment_C_revised_02272012_clean with OS edits_NCEH_4May12

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ATTACHMENT C

Website Content and FAQs

ATTACHMENT C1

Website Content and FAQs

Study Participants

Study Participants Website Contents

Children’s Health after the Storms

Homepage

Welcome to the Children’s Health after the Storms (CHATS) Study website!

RTI International (RTI) is asking for your help with the Children’s Health after the Storms (also known as CHATS) Study. CHATS was created to look into your concerns about the health of children in the Gulf Coast after Hurricanes Katrina and Rita. This is so that we can better understand the effects of the living conditions—such as storm damaged housing, FEMA-supplied trailers, and housing unaffected by the storms—on children in the area.

Who We Are

CHATS is led by RTI International along with local Louisiana and Mississippi partners, including the Louisiana State University Health Sciences Center (LSUHSC), the Coastal Family Health Center (CFHC), the Louisiana Public Health Institute (LPHI), and Aten Solutions. The Study is supported by the Centers for Disease Control and Prevention (CDC). This Study is part of CDC’s continuing promise to look at the possible health effects of the storms on the Gulf Coast children.

RTI International is one of the world’s leading research institutes, dedicated to improving the human condition by turning knowledge into practice. Our staff of more than 2,800 provides research and technical expertise to governments and businesses in more than 40 countries in the areas of health and pharmaceuticals, education and training, surveys and statistics, advanced technology, international development, economic and social policy, energy and the environment, and laboratory and chemistry services. For more information, visit www.rti.org.

Louisiana State University Health Sciences Center (LSUHSC) is a well known public academic institution in Louisiana and the Gulf Coast region. LSUHSC maintains a statewide public hospital system and is recognized and valued by Gulf Coast communities. LSUHSC provided uninterrupted health care and services in New Orleans, Baton Rouge, and other locations after Hurricanes Katrina and Rita. LSUHSC will provide local nurses to conduct home health assessments in Louisiana and laboratory analysis of blood and urine samples collected as part of the Study.

Coastal Family Health Center (CFHC) was founded on the principle that health care should be accessible to all residents of the Mississippi Gulf Coast, and that these health care services should be provided in an effective and efficient manner being responsive to the needs of the population. CFHC has been a part of the Gulf Coast communities for more than 30 years serving the residents of three counties, Jackson, Harrison and Hancock. CFHC will provide local nurses to conduct home health assessments in Mississippi.

The Louisiana Public Health Institute (LPHI) is a nonprofit organization that serves as a partner and convener to improve population-level health outcomes. LPHI is part of a growing movement of public health institutes across the country. The mission is to promote and improve health and quality of life through diverse public-private partnerships with government, foundations, academia, community groups and private businesses at the community, parish and state levels. LPHI coordinates and manages public health programs and initiatives in the areas of health systems development and health promotion and disease prevention and provides an array of services to help meet the needs of local and national partner organizations.

Aten Solutions, a small business with expertise in clinical research, will perform the medical records abstraction.

The study is supported by the Centers for Disease Control and Prevention (CDC). For over 60 years, the CDC has been dedicated to protecting health and promoting quality of life for all people. Through collaborations like CHATS, the CDC works to create the expertise, information, and tools that people and communities need to protect their health – through health promotion, prevention of disease, injury and disability, and preparedness for new health threats. CHATS is part of CDC’s continuing commitment to the people who lived in the Gulf Coast after Hurricanes Katrina and Rita.

Why this Study and Why Now

After the Hurricanes, people started expressing concerns about health problems in children possibly due to their living conditions after the storms, including storm damaged housing, FEMA-supplied trailers, and housing unaffected by the storms. In 2007, CDC started looking into the possible reasons and received advice from several groups of experts. The CHATS study is the result of those early studies and long discussions. CDC is fulfilling their promise to look at the health effects on children who lived in the areas affected by Hurricanes Katrina and Rita. After consulting scientists and state and federal government officials, the CHATS study is ready to start. CHATS is a very large study and the design and planning for a study of this size is complicated. The first two years of the study will actually be a test to see if the full study is possible.

About the Study

CHATS will record the experiences, symptoms and illnesses children have experienced. We are inviting children who were ages 3 to 15 by 6/1/11 and who lived in the areas affected by Hurricanes Katrina and Rita.
The study will examine the health of Gulf Coast area children who lived in storm damaged housing, FEMA-supplied trailers, or housing not impacted by the storms. CHATS has two phases. The first phase is a two-year “feasibility study”. We are doing the feasibility study to find out if we can do a larger, full study, which would be the second phase.
For the two-year feasibility study we will enroll 500 children. We will only invite children for the feasibility study who are now living in Louisiana or Mississippi.
RTI International is leading this study with Louisiana and Mississippi partners, the Louisiana State University Health Sciences Center (LSUHSC), the Coastal Family Health Center (CFHC), and the Louisiana Public Health Institute (LPHI). The RTI team will be providing the data to researchers at the Centers for Disease Control and Prevention (CDC), who are supporting the study.

Technical and Community Advisory Panels

RTI will work with a Technical Advisory Panel (TAP) and a Community Advisory Panel (CAP). The TAP focuses on study design issues and the CAP focuses on community outreach efforts.
- TAP members comment on the overall study design. The TAP includes experts in environmental sciences, epidemiology, survey design, clinical sciences, and community research.
- The CAP is made up of eight community leaders from different community organizations that have worked with those affected by the Hurricanes in Louisiana and Mississippi. CAP members work with CHATS to tell the public about the study and inform the CHATS staff about any concerns the community may have about the study.

Who Can Take Part in the CHATS Study?

Households have been randomly chosen, that is by chance, to take part in CHATS. One child per household will be chosen. An eligible child must:

live in a household contacted by CHATS, and
be aged 3 to 15 years old by June 1, 2011, and
lived in the storm-affected areas at the time of Hurricanes Katrina or Rita, OR were born after the hurricanes, but have since lived in the storm-affected areas, and
currently live in Louisiana or Mississippi, and
live in a home with at least one parent or guardian 18 years or older, and speak English, Spanish, or Vietnamese.

Even if your child has been healthy since Hurricanes Katrina and Rita, we want you to take part. To help us understand the health effects of living in the areas affected by the storms, we strongly encourage parents and guardians of children who have been healthy as well as children who have been ill to take part in CHATS.

Because the study in the first two years is small, for this feasibility phase we will look for children only in certain communities. Community-based organizations and the Community Advisory Panel (CAP) have helped CHATS staff to tell those communities about the CHATS Study and to get people involved.

Tokens of Appreciation We will provide tokens of appreciation to the parent or guardian and child based on the level of participation and the age of the child. There are several parts to the study: interviews, measuring air in the home, having the older children wear a measuring device that measures the air that they breathe, and a health assessment of the child. If you choose to participate, your family could receive up to $125 or $135 depending on the age of the child and your decision to take part in some or all of the study.

Data Collection

We will start by having a professional RTI interviewer visit your home to ask a few questions. If your child is invited to join CHATS, the interviewer will begin the “Baseline assessment”. The Baseline assessment has two parts which we do 5 to 9 days apart. We will also do a “Follow-up assessment” which will occur six months after the Baseline assessment.

During the first session of the Baseline assessment, the interviewer will:
During the second session of the Baseline assessment:

Look at the child’s face, neck, arms, and legs for signs of allergies.
Measure the child’s height and weight.
Do some breathing tests to see if the child has difficulty breathing.
Collect a small urine sample to see if the child is exposed to some harmful chemicals and a small blood sample to check for blood problems and allergies.
Ask the parent or guardian about possibly harmful chemicals the child may have been around.
Ask about activities the child took part in over the week.
The interviewer will vacuum some dust from places around the house and pack up the equipment that was left during the first session to measure the air and dust in and around the home.
Look around the neighborhood to find things like chemical plants, roads, or other sources of pollution nearby.

As part of the data collection efforts, CHATS will obtain copies of a select number of children’s medical records. We will request parent or guardian consent to allow CHATS staff access and review of these medical records to obtain a better picture of the child’s overall health, including any reported medical problems.

Privacy

We respect your privacy. Your data will be protected to the fullest extent of the law. We will keep all data safe and secure, and neither your name, nor the name of your child will be reported with the results of the study. When we share some of the data with Louisiana State University Health Sciences Center (LSUHSC), the Coastal Family Health Center (CFHC), the Louisiana Public Health Institute (LPHI), and Aten Solutions, we do so in a way that protects your privacy. No government agency will receive your name or other identifying information. All published information about the study will be written in a way that does not identify you or your family. In addition, RTI has obtained a Federal Certificate of Confidentiality from the Department of Health and Human Services for the CHATS study to protect the privacy of our participants.

Community Involvement

The Community Advisory Panel (CAP) consists of eight community leaders from different community organizations that have worked with those affected by the Hurricanes in Louisiana and Mississippi. CAP members work with CHATS to tell the public about the study and inform the CHATS staff about any concerns the community may have about the study.

Community Advisory Panel Members

New Orleans, LA

Children's Health Fund. Co-founded in 1987 by singer/songwriter Paul Simon and pediatrician/child advocate Irwin Redlener, MD, the Children’s Health Fund is committed to providing health care to the nation's most medically underserved children through the development and support of innovative primary care medical programs; response to public health crises; and the promotion of guaranteed access to appropriate health care for all children. The Fund works specifically to: support a national network of pediatric programs in some of the nation's most disadvantaged rural and urban communities; ensure support of its flagship pediatric programs for homeless and other medically underserved children in New York City; advocate for policies and programs which will ensure access to medical homes that provide comprehensive and continuous health care for all children; and educate the general public about the needs and barriers to health care experienced by disadvantaged children.

Community Center of St Bernard (CCSB). The Community Center of St Bernard is a community-based grassroots 501 (c) (3) nonprofit. CCSB’s mission is to assist local residents in their return to their homes, and to help normalize life in these trying times. CCSB is dedicated to providing a wide range of necessary community services, including free food, clothes, internet access, free long distance and local phone service, computer classes, hot meals, and community events such as after school programs and workshops. The Community Center facility also serves as a meeting place for many local groups such as the St Bernard Parish Girl Scouts, Boy Scouts, Old Arabi Neighborhood Association, Arabi Neighborhood Block Watch and various Masonic lodges. CCSB actively seeks to form collaborations with partner agencies to bring additional needed services to St Bernard Parish residents, including free medical care, legal aid, crisis counseling, and food stamp assistance.

Kingsley House educates children, strengthens families and builds community. Kingsley House is dedicated to improving the quality of life in Southeast Louisiana by collaboratively working with others to build a comprehensive system of services and resources that meet the needs of recovering communities. Kingsley House is committed to: integrity and excellence; best practices and evidence-based programs; true partnerships with participants and community; and cultural sensitivity and diversity. Kingsley House provides: nationally accredited and recognized programs that provide positive results in a nurturing environment; education and advocacy on issues affecting children, families and community; fiscally responsible programs and agency operations; and a focus on measuring results and documenting success.

Mary Queen of Viet Nam, Community Development Corporation, Inc. (MQVN CDC) is a non-profit organization dedicated to preserving and promoting their unique diversity and improving the quality of life of residents in the Greater New Orleans area, beginning in New Orleans East. Together with community partners, MQVN CDC work encompasses health care, environmental and agricultural concerns, education, housing, social services, economic development and culture and the arts. A few of MQVN CDC major accomplishments to date include: providing emergency relief assistance to over 3,000 Vietnamese American residents post-Katrina; developing a trailer site that provided 199 trailer homes to hundreds of returnees; engaging nearly 1,000 community members in identifying community needs and articulating priorities for neighborhood rebuilding process; and offering culturally competent case management services to over 1,200 community members.

Neighborhood Partnership Network (NPN) is a nonprofit organization consisting of a citywide network of neighborhoods that was established after the Hurricane Katrina disaster to facilitate neighborhood collaboration, increase access to government and information, and strengthen the voices of individuals and communities across New Orleans. NPN answers New Orleanians’ desires to be involved in the formal decision-making processes that impact quality of life issues for citizens and neighborhoods. NPN’s mission is to improve the quality of life by engaging New Orleanians in neighborhood revitalization and civic processes. NPN consists of a board of community leaders reflective of neighborhoods throughout the city and a diverse staff immersed in coalition building, public and government relations. NPN envisions a New Orleans where all neighborhoods are great places to live.

Vision of Hope’s mission is to provide safe, permanently affordable housing and security from displacement for low to moderate income residents. Vision of Hope’s purpose is to build strong and stable communities through the empowerment of its residents by offering access to education, healthcare, training and other resources. The organization strives to create and enhance wholesome communities where residents have hope and participate in community life. Vision of Hope promotes a comprehensive approach to neighborhood renewal, but also encompasses economic development, social service partnerships, development of educational opportunities and leadership.

Mississippi

Pearlington Impact Association’s mission is to actively be of service to the community by working together to positively affect social change, community involvement and volunteerism to produce a higher quality of life in the community in which we live. Pearlington Impact Association finds and provides resources for at risk youth such as after school programs, summer camps, and athletics. Pearlington attempts to provide a positive environment for youth once off the school bus. Pearlington has recently begun exploring resources to provide services for seniors in the community.

STEPS Coalition’s mission is to build a democratic movement to create a healthy, just and equitable Mississippi Gulf Coast by developing local leadership, supporting communities to advocate for their needs and by facilitating communication, coordination, and collaboration among membership. STEPS vision is that local neighborhoods will be involved in decision-making processes that affect their lives and the future of their communities. Non-profits, faith-based, civic organizations, and all people who share STEPS’ vision work together for a healthy, just and equitable Mississippi Gulf Coast.

Frequently Asked Questions (FAQs)

Q: What is the Children’s Health after the Storms (CHATS) Study?

A: CHATS is a study that was created to look into the concerns raised by some residents about the health of children living in the Gulf Coast areas after Hurricanes Katrina and Rita. CHATS will help us better understand the effects of living conditions—such as storm damaged housing, FEMA-supplied trailers, and housing unaffected by the storms—on children in the area.

Q: How do I know if my family can participate in CHATS?

A: Households have been randomly chosen, that is selected by chance, to take part in CHATS. If your household has been chosen to participate in CHATS, you will receive a letter and brochure in the mail inviting you to participate in the Study. Because the two year feasibility phase is small, not every family affected by Hurricanes Katrina and Rita will be invited to participate. For the feasibility phase, we will look for children only in certain communities.

Q: How will CHATS help children and families?

A: By joining the study, you can play an important part in helping the Gulf Coast communities better understand the impact the Hurricanes had on the health of children living in the area. The CHATS study will provide your family with information for your child that includes the results of the blood and urine tests, as well as results of air quality tests done in your home within 5 months of each completed assessment. If CHATS finds areas of concern about your child’s health, we will provide a resource list of clinics and doctors to contact for help.

Q: Hurricanes Katrina and Rita occurred in 2005, more than 5 years ago. What has taken so long?

A: After the Hurricanes, people started expressing concerns about health problems in children that were living in the Gulf Coast area. In 2007, CDC started looking into the possible reasons and received advice from several groups of experts. The CHATS study is the result of those early studies and long discussions. CDC is supporting CHATS as part of its continuing public health commitment to the people affected by Hurricanes Katrina and Rita. After consulting scientists and state and federal government officials, the CHATS study is ready to start. CHATS is a very large study and the design and planning for a study of this size is complicated. The first two years of the study will actually be a test to see if the full study is possible.

Q: Who is doing the CHATS Study?

A: CHATS is led by RTI International, along with local Louisiana and Mississippi partners, including the Louisiana State University Health Sciences Center (LSUHSC), the Coastal Family Health Center (CFHC), the Louisiana Public Health Institute (LPHI) and Aten Solutions. CHATS is supported by the Centers for Disease Control and Prevention (CDC).

Q: How do I know my family’s privacy will be protected?

A: Your privacy is the most important thing for CHATS staff. All CHATS staff signed a privacy pledge. We take that pledge very seriously. Here are some examples:

Your data will be protected to the fullest extent of the law.
We will not report your names with the study’s results. We look at all of the data by groups of persons, not specific individuals. Your names will not be identified in any report that uses results data from the CHATS Study. All published information about the study will be in summary form only.
We have strict data security procedures in place. After the data are processed, we keep any identifying information about participants separate from the responses and blood or urine test results. In fact, we keep the two types of information in two different places. This helps us keep your identity private. For added protection, RTI has obtained a Federal Certificate of Confidentiality from the Department of Health and Human Services for the CHATS study to protect the privacy of our participants.
Only authorized staff and researchers have access to your answers. We let only the fewest people possible see your answers to respect and protect your privacy.
We do not share your name or any identifiable information you give us with any government agency. All identifiable information you give will be kept strictly private and not shared with any government agencies. There is an important exception: if participants tell the CHATS interviewer or nurse that they plan to cause serious harm to themselves or others, the CHATS interviewer or nurse will inform the appropriate county or state agency.

Q: Will you sell our information?

A: No, we will not sell anything that is part of the CHATS Study, including information or results. This study is for research purposes only, to better understand the impact the Hurricanes had on the health of children living in the Gulf Coast.

Q: Are there risks to my family’s health or services if we take part?

A: No, there are no risks to your health or services you may receive. We do not share any identifiable information about your family with any other organization or any government agency so there is no way participation could affect any services you receive. There is an important exception: if the CHATS interviewer or nurse feels that anyone’s life or health is in danger, they will inform the appropriate county or state agency. The urine collection will not be painful and the blood sample will be similar to receiving a shot. When blood is taken, local bruising may occur, but this is not a health risk.

Q: Who will collect the biological samples and will they hurt?

A: Professional nurses from Louisiana State University Health Sciences Center (in Louisiana) and Coastal Family Health (in Mississippi) will collect blood and urine samples. The urine collection will not be painful and the blood sample will be similar to receiving a shot. When blood is taken, local bruising may occur. But this is not a health risk.

Q: Who can I contact if I have questions about the study?

A: If you would like to speak with a CHATS Study team member please call our toll-free telephone number at 1-877-834-7088 or email us at [email protected]. A CHATS staff member will call you back within 24 hours.

Q: What is formaldehyde?

A: Formaldehyde is a common chemical in our environment. Sources of formaldehyde in the environment include:

Household sources, such as fiberglass, carpets, permanent press fabrics, paper products, and some household cleaners,
Manufactured wood products used in new mobile homes,
Cigarettes and other tobacco products, gas cookers, and open fireplaces,
Smog

In some people, exposure to low levels of formaldehyde may cause irritation of the eyes, nose, throat, and skin. Some people with asthma may be sensitive to the effects of inhaled formaldehyde.

Q: What will my family be asked to do if we agree to participate in CHATS?

A: We will start by having a professional CHATS interviewer visit your home to ask a few questions about the types of housing you and your children have lived in since the Hurricanes. If the child is the right age and has had the type of living experiences we are looking for, we will invite you to participate in the study. The interviewer will begin the Baseline assessment. The Baseline assessment has two parts which we do 5 to 9 days apart. We will also do a Follow-up assessment which will occur six months after the Baseline assessment.

During the first session of the Baseline assessment, the interviewer will:
During the second session of the Baseline assessment:

Look at the child’s face, neck, arms, and legs for signs of allergies.
Measure the child’s height and weight.
Do some breathing tests to see if the child has difficulty breathing.
Collect a small urine sample to see if the child is exposed to some harmful chemicals and a small blood sample to check for blood problems and allergies.
Ask you questions about possibly harmful chemicals the child may have been around.
Ask about the activities the child took part in over the week.
The interviewer will vacuum some dust from places around the house and pack up the equipment that was left during the first session to measure the air and dust in and around the home.
Look around the neighborhood to find things like chemical plants, roads, or other sources of pollution nearby.

Q: How long will it take?

A: We expect the first two Baseline assessments together to take 2 hours and 15 minutes to 3 hours and 15 minutes and the second two Follow-up assessments together to take about 1 hour and 15 minutes to 2 hours and 15 minutes. If your child has health problems or if he or she is wearing the MicroPEM™, a small device to measure the quality of the air he or she breathes, we will ask extra questions about his or her symptoms, doctor visits, and physical activity.

Q: Will CHATS help families if a child is identified as having a health problem?

A: Within 5 months, the CHATS Study will provide each family with information for your child which includes the results of the blood and urine tests that were performed. If there are any areas of concern regarding the children’s health, the study will provide a resource list of clinics and doctors to contact for help. If these test results indicate there is a serious concern that your child gets rapid health care, you will be told immediately.

Q: Why do you want to review my child’s medical records?

CHATS will obtain copies of a select number of children’s medical records. We are requesting parent or guardian consent to allow RTI International researchers and its contractors, which includes the CHATS medical records staff working on the study, to access and review these medical records to obtain a better picture of the child’s overall health, including any reported medical problems.

We are asking a select number of parents or guardians to choose up to 3 doctors or clinics your child has visited since late August of 2003. We will then ask the doctors or clinics to release different types of information about your child’s health, using a signed form from you as your written permission. The information we will request will include the following:

Your child’s entire medical chart, including notes on office visits
Reports from your child’s laboratory or other tests or x-rays and CT scans
Your child’s complete medical history, including any diagnoses and prescription data
And reports from other procedures your child has had

All staff working on CHATS are required by federal law to keep all information collected about your child strictly private. We will not report your child’s name or your name with your child’s data in the study’s results. Also, all answers and data collected for CHATS will be combined with other interviews and all published information about the study will be in summary form only.

Q: What samples will you take from my home?

A: We will take dust and air samples inside and outside your home. We will also ask about the neighborhood to find out if there are chemical plants, roads, or other sources of pollution nearby.

Q: What are you going to do with biological and air samples you collect?

A: The blood and urine samples will be tested and stored at the Interim Louisiana State University Public Hospital until the study is completed. Household and community samples (dust and air) will be analyzed and stored in laboratories at RTI International until the study is completed. The urine sample will be tested to see if your child is exposed to some harmful chemicals and the blood sample will be tested to check for blood problems and allergies. Information on the blood, urine, and air quality tests will be shared with your family.

Q: What questions will you ask?

A: We will ask you about your child’s medical history, breathing problems, skin problems, visits to the doctor, daily activities including school and physical activities, and classes in temporary school buildings. We will ask about your family activities, such as smoking, travel in cars, use of household cleaners, burning wood, and cooking. We will also ask about hurricane-related damage to your home, home layout, room sizes, recent construction and painting, new carpet, mildew or mold, dust, use of humidifiers, home ventilation, and heating and air conditioning.

Q: Do I have to join the study?

A: No, but we hope to invite enough children living in the Gulf Coast. By joining the study, you can play an important part in helping us understand the full health impact of the hurricanes on children living in the Gulf Coast.

Q: Do I have to agree to participate in all parts of the study?

A: No. We hope that families will agree to take part, but you can skip or refuse to answer any question. You can also refuse to participate in any part of the study.

Q: What is in it for me and my family?

A: After participation, your family will receive the results of your child’s blood and urine tests conducted as part of this study, and information about the air quality inside your home. If the blood and urine test results indicate a child should be seen by a doctor, the study will provide a resource list of clinics and doctors to contact for help. Families will also receive information from the child’s health assessment conducted in your home. The nurse will provide information on your child’s height, weight, and note any possible skin rashes or breathing difficulties at the time of the home visit.

Tokens of appreciation will be provided to the parent or guardian and child based on the age of the child and level of participation in the study. If you choose to participate in the baseline assessment, your family could receive up to $125 or $135 depending on the age of the child and your decision to take part in some or all of the study.

Q: Why should my family join the study?

A: By joining the Study, you can play an important part in helping Gulf Coast communities better understand the impact the Hurricanes had on the health of children living in the area.

Q: Will I get the test results from the environmental and biological samples?

A: After participation, your family will receive information about the current health of your child based on the blood and urine tests conducted as part of this study, and information about the air quality inside your home. If the blood and urine test results indicate a child should be seen by a doctor, the study will provide a resource list of clinics and doctors to contact for help.

Q: Will we receive anything for taking part in the study?

A: We will provide tokens of appreciation to the parent or guardian and child based on the level of participation and age of the child. If you choose to participate in the baseline assessment, your family could receive up to $125 or $135 depending on the age of the child and your decision to take part in some or all of the study.

Q: Why does the study take two years to complete?

A: As children grow, their health changes. We need to watch how children’s health changes as they grow to fully understand any health effects among the children who lived the area after Hurricanes Katrina and Rita.

Contact Us

If you would like to speak with a CHATS team member please call our toll-free telephone number at 1-877-834-7088 or email us at [email protected]. A CHATS staff member will call you back within 24 hours.

ATTACHMENT C2

Website Content and FAQs

General Public

General Public Website Contents

Children’s Health after the Storms

Homepage

Welcome to the Children’s Health after the Storms (CHATS) Study website!

RTI International (RTI) is conducting the Children’s Health after the Storms (also known as CHATS) Study. CHATS was created to look into concerns about the health of children in the Gulf Coast after Hurricanes Katrina and Rita. This is so that we can better understand the effects of the living conditions—such as storm damaged housing, FEMA-supplied trailers, and housing unaffected by the storms—on children in the area.

Who We Are

Aten Solutions, a small business with expertise in clinical research will perform the medical records abstraction.

Why this Study and Why Now

About the Study

CHATS will record the experiences, symptoms and illnesses children have experienced. We are inviting children who were ages 3 to 15 by 6/1/11 and who lived in the areas affected by Hurricanes Katrina and Rita.
Children who are healthy and children who are ill can take part in CHATS.
The study will examine the health of Gulf Coast area children who lived in different types of conditions after Hurricanes Katrina and Rita, including storm damaged housing, FEMA-supplied trailers or housing unaffected by the storms. CHATS has two phases. The first phase is a two-year “feasibility study”. We are doing the feasibility study to find out if we can do a larger, full study, which would be the second phase.
For the two-year feasibility study we will enroll 500 children. We will only invite children for the feasibility study who are now living in Louisiana or Mississippi.
RTI International is leading this study with Louisiana and Mississippi partners, the Louisiana State University Health Sciences Center (LSUHSC), the Coastal Family Health Center (CFHC), and the Louisiana Public Health Institute (LPHI). The RTI team will be providing the data to researchers at the Centers for Disease Control and Prevention (CDC), who are supporting the study.

Technical and Community Advisory Panels

RTI will work with a Technical Advisory Panel (TAP) and a Community Advisory Panel (CAP). The TAP focuses on study design issues and the CAP focuses on community outreach efforts.
- TAP members comment on the overall study design. The TAP includes experts in environmental sciences, epidemiology, survey design, clinical sciences, and community research.
- The CAP is made up of eight community leaders from different community organizations that have worked with those affected by the Hurricanes in Louisiana and Mississippi. CAP members work with CHATS to tell the public about the study and inform the CHATS staff about any concerns the community may have about the study.

Who Can Take Part in the CHATS Study?

Households have been randomly chosen, that is by chance, to take part in CHATS. One child per household will be chosen. An eligible child must:

live in a household contacted by CHATS, and
be aged 3 to 15 years old by June 1, 2011, and
lived in the storm-affected areas at the time of Hurricanes Katrina or Rita, OR were born after the hurricanes, but have since lived in the storm-affected areas, and
currently live in Louisiana or Mississippi, and
live in a household with at least one parent or guardian 18 years or older, and speak English, Spanish, or Vietnamese.

To help us understand the potential health effects of living in areas affected by the storms, we strongly encourage parents and guardians of children who have been healthy as well as children who have been ill to take part in CHATS if contacted by the Study.

Data Collection

We will start by having a professional RTI interviewer visit the homes of randomly selected households, that is, households that have been selected by chance to ask a few questions. If a child is invited to join CHATS, the interviewer will begin the “Baseline assessment”. The Baseline assessment has two parts which we do 5 to 9 days apart. We will also do a “Follow-up assessment” which will occur six months after the Baseline assessment.

During the first session of the Baseline assessment, the interviewer will:
During the second session of the Baseline assessment:

Look at the child’s face, neck, arms, and legs for signs of allergies.
Measure the child’s height and weight.
Do some breathing tests to see if the child has difficulty breathing.
Collect a small urine sample to see if the child is exposed to some harmful chemicals and a small blood sample to check for blood problems and allergies.
Ask the parent or guardian about possibly harmful chemicals the child may have been around.
Ask about activities the child took part in over the week.
The interviewer will vacuum some dust from places around the house and pack up the equipment that was left during the first session to measure the air and dust in and around the home.
Look around the neighborhood to find things like the nearest chemical plants, roads, or other sources of pollution nearby.

As part of the data collection efforts, CHATS will obtain copies of a select number of children’s medical records. We will request parent or guardian consent to allow CHATS staff working on the study access and review of these medical records to obtain a better picture of the child’s overall health, including any reported medical problems.

Privacy

We respect the privacy of CHATS participants. The data will be protected to the fullest extent of the law. We will keep all data safe and secure, and the names of our participants will not be reported with the study’s results. When we share some of the data with Louisiana State University Health Sciences Center (LSUHSC), the Coastal Family Health Center (CFHC), the Louisiana Public Health Institute (LPHI), and Aten Solutions we do so in a way that protects the participant’s privacy. All published information about the study will be written in a way that does not identify participants or their family. For added protection, RTI has obtained a Federal Certificate of Confidentiality from the Department of Health and Human Services for the CHATS study to further protect the privacy of our participants.

Community Involvement

Community Advisory Panel Members

New Orleans, LA

Mississippi

Frequently Asked Questions (FAQs)

Q: What is the Children’s Health after the Storms (CHATS) Study?

A: CHATS is a study that was created to look into the concerns raised by some residents about the health of children living in the Gulf Coast area after Hurricanes Katrina and Rita. CHATS will help us better understand the effects of living conditions—such as storm damaged housing, FEMA-supplied trailers, or housing unaffected by the storms—on children in the area.

Q: How do I know if my family can participate in CHATS?

Q: Who will be asked to participate in CHATS?

A: Many people lived in the areas affected by the Hurricanes, however not everyone will be asked to participate in CHATS. The study scientists have chosen households randomly, that is by chance, to take part in CHATS. Those households will receive letters explaining the study. If your household is selected, it cannot be replaced with another household. Because the two year feasibility phase is small, we will look for children only in certain communities. We are doing the feasibility study to find out if we can do a larger, full study, which would be much larger, enroll many more children, and last many more years.

Q: How will CHATS help children and families?

A: By joining the study, participating families can play an important part in helping the Gulf Coast communities better understand the impact the Hurricanes had on the health of children living in the area. The CHATS study will provide each participating family with information for their child that includes the results of the blood and urine tests, as well as results of air quality tests done in their home within 5 months of each completed assessment. If CHATS finds areas of concern about a participating child’s health, we will provide a resource list of clinics and doctors to contact for help.

Q: Hurricanes Katrina and Rita occurred in 2005, more than 5 years ago. What has taken so long?

After the Hurricanes, people started expressing concerns about health problems in children living in the area. In 2007, CDC started looking into the possible reasons and received advice from several groups of experts. The CHATS study is the result of those early studies and long discussions. CDC is supporting CHATS as part of its continuing public health commitment to the people affected by Hurricanes Katrina and Rita. After consulting scientists and state and federal government officials, the CHATS study is ready to start. CHATS will be a very large study and the design and planning for a study of this size is complicated. The first two years of the study will actually be a test to see if the full study is possible.

Q: Who is doing the CHATS Study?

Q: How do families know their privacy will be protected?

A: Privacy is the most important thing for CHATS staff. All CHATS staff signed a privacy pledge. We take that pledge very seriously. Here are some examples:

Personal data will be protected to the fullest extent of the law.
We will not report our participants’ names with the study’s results. We look at all of the data by groups of persons, not specific individuals. Participants will not be identified in any report that uses results data from the CHATS Study. All published information about the study will be in summary form only.
We have strict data security procedures in place. After the data are processed, we keep any identifying information about participants separate from the responses and blood or urine test results. In fact, we keep the two types of information in two different places. This helps us keep participants’ identities private. For added protection, RTI has obtained a Federal Certificate of Confidentiality from the Department of Health and Human Services for the CHATS study to protect the privacy of our participants.
Only authorized staff and researchers have access to participants’ answers. We let only the fewest people possible see participants’ answers to respect and protect their privacy.
We do not share names or any identifiable information participants give us with any government agency. All identifiable information participants give will be kept strictly private and not shared with any government agencies. There is an important exception: if participants tell the CHATS interviewer or nurse that they plan to cause serious harm to themselves or others, the CHATS interviewer or nurse will inform the appropriate county or state agency.

Q: Will you sell participants’ information?

Q: Are there risks to a family’s health or services if they take part?

A: No, there are no risks to a participant’s health or services they may receive. We do not share any information about a participant’s family with any other organization or any government agency other than CDC so there is no way participation could affect any services they receive. There is an important exception: if the CHATS interviewer or nurse feels that anyone’s life or health is in danger, they will inform the appropriate county or state agency. The urine collection will not be painful and the blood sample will be similar to receiving a shot. When blood is taken, local bruising may occur, but this is not a health risk.

Q: Who will collect the biological samples and will they hurt?

Q: Who can I contact if I have questions about the study?

Q: What is formaldehyde?

A: Formaldehyde is a common chemical in our environment. Sources of formaldehyde in the environment include:

Household sources, such as fiberglass, carpets, permanent press fabrics, paper products, and some household cleaners,
Manufactured wood products used in new mobile homes,
Cigarettes and other tobacco products, gas cookers, and open fireplaces,
Smog

In some people, exposure to low levels of formaldehyde may cause irritation of the eyes, nose, throat, and skin. Some people with asthma may be sensitive to the effects of inhaled formaldehyde.

Q: What will families be asked to do if they agree to participate in CHATS?

A: We will start by having a professional CHATS interviewer visit homes to ask a few questions about the types of housing families have lived in since the Hurricanes. If the child is the right age and has had the type of living experiences we are looking for, we will invite families to participate in the study. The interviewer will begin the Baseline assessment. The Baseline assessment has two parts which we do 5 to 9 days apart. We will also do a Follow-up assessment which will occur six months after the Baseline assessment.

During the first session of the Baseline assessment, the interviewer will:
During the second session of the Baseline assessment:

Look at the child’s face, neck, arms, and legs for signs of allergies.
Measure the child’s height and weight.
Do some breathing tests to see if the child has difficulty breathing.
Collect a small urine sample to see if the child is exposed to some harmful chemicals and a small blood sample to check for blood problems and allergies.
Ask questions about possibly harmful chemicals the child may have been around.
Ask about the activities the child took part in over the week.
The interviewer will vacuum some dust from places around the house and pack up the equipment that was left during the first session to measure the air and dust in and around the home.
Look around the neighborhood to find things like chemical plants, roads, or other sources of pollution nearby.

Q: How long will it take?

A: We expect the first two Baseline assessments together to take 2 hours and 15 minutes to 3 hours and 15 minutes and the second two Follow-up assessments together to take about 1 hour and 15 minutes to 2 hours and 15 minutes. If a child has health problems or if he or she is wearing the MicroPEM™, a small device to measure the quality of the air he or she breathes, we will ask extra questions about his or her symptoms, doctor visits, and physical activity.

Q: Will CHATS help families if a child is identified as having a health problem?

A: Within 5 months, the CHATS Study will provide each participating family with information for their child which includes the results of the blood and urine tests that were performed. If there are any areas of concern regarding the children’s health, the study will provide a resource list of clinics and doctors to contact for help. If these test results indicate there is a serious concern that the child gets rapid health care, the participating family will be told immediately.

Q: Why do you want to review a child’s medical records?

CHATS will obtain copies of a select number of children’s medical records. We are requesting parent or guardian consent to allow CHATS staff access and review of these medical records to obtain a better picture of the child’s overall health, including any reported medical problems.

We are asking a select number of parents or guardians to choose up to 3 doctors or clinics their child has visited since late August of 2003. We will then ask the doctors or clinics to release different types of information about the child’s health, using a signed form from parents or guardians as their written permission. The information we will request will include the following:

Child’s medical chart since August 2003, including notes on office visits
Reports from the child’s laboratory or other tests or x-rays and CT scans
Child’s complete medical history, including any diagnoses and prescription data
And reports from other procedures the child has had

All staff working on CHATS are required by federal law to keep all information collected about a child strictly private. We will not report a child’s name or a parent or guardian’s name with the child’s data in the study’s results. Also, all answers and data collected for CHATS will be combined with other interviews and all published information about the study will be in summary form only.

Q: What samples will you take from homes?

A: We will take dust and air samples inside and outside the home. We will also ask about the neighborhood to find out if there are chemical plants, roads, or other sources of pollution nearby.

Q: What are you going to do with biological and air samples you collect?

A: The blood and urine samples will be tested and stored at the Interim Louisiana State University Public Hospital until the study is completed. Household and community samples (dust and air) will be analyzed and stored in laboratories at RTI International until the study is completed. The urine sample will be tested to see if the child is exposed to some harmful chemicals and the blood sample will be tested to check for blood problems and allergies. Information on the blood, urine, and air quality tests will be shared with the families.

Q: What questions will you ask?

A: We will ask study participants about the child’s medical history, breathing problems, skin problems, visits to the doctor, daily activities including school and physical activities, and classes in temporary school buildings. We will ask about family activities, such as smoking, travel in cars, use of household cleaners, burning wood, and cooking. We will also ask about hurricane-related damage to the home, home layout, room sizes, recent construction and painting, new carpet, mildew or mold, and dust, use of humidifiers, home ventilation, and heating and air conditioning.

Q: Do families contacted by CHATS have to join the study?

A: No, but we hope to invite enough children to study the health of children living in the Gulf Coast. By joining the study, participants can play an important part in helping us understand the impact of the Hurricanes had on the health of children living in the Gulf Coast. Participating families cannot be replaced with another family.

Q: Do participating families have to agree to participate in all parts of the study?

A: No. We hope that families will agree to take part, but they can skip or refuse to answer any question. Families can refuse to participate in any part of the study.

Q: What is in it for the participating family?

A: After participation, families will receive the results of their child’s blood and urine tests conducted as part of this study, and information about the air quality inside their home. If the blood and urine test results indicate a child should be seen by a doctor, the study will provide a resource list of clinics and doctors to contact for help. Participating families will also receive information from the child’s health assessment conducted in their home. The nurse will provide information on the child’s height, weight, and note any possible skin rashes or breathing difficulties at the time of the home visit.

Q: Why should families join the study?

A: By joining the Study, participating families can play an important part in helping Gulf Coast communities better understand the impact that Hurricanes had on the health of children living in the area.

Q: Will families get the test results from the environmental and biological samples?

A: After participation, families will receive information about the current health of their child based on the blood and urine tests conducted as part of this study, and information about the air quality inside their home. If the blood and urine test results indicate a child should be seen by a doctor, the study will provide a resource list of clinics and doctors to contact for help.

Q: Will participants receive anything for taking part in the study?

A: We will provide tokens of thanks to the parent or guardian and children based on the level of participation and age of the child.

Q: Why does the study take two years to complete?

A: As children grow, their health changes. We need to watch how children’s health changes as they grow to fully understand any health effects among the children living in the Gulf Coast after Hurricane Katrina and Rita.

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