Siblings of children with autism are at a higher risk of also having the disorder than previously thought. Researchers at the Mind Institute at the University of California, Davis have found that siblings of children with autism spectrum disorder have a 1 in 5 chance of also being autistic, when previous statistics said there was a 1 in 10 chance of the sibling having the disorder.
The latest research came from the largest study to date on the risk of autism among siblings. Published in the journal Pediatrics and supported by Autism Speaks and the National Institutes of Health, the research followed 664 eight month-old infants, who had siblings with ASD, until they reached 36 months. Nineteen percent of the siblings were diagnosed with the disorder, which puts siblings of children with autism at a 20 times greater risk of developing ASD than the general population.
Keeping families and patients informed and aware of emerging research like this is important. Researchers urge families who have children with autism and are considering having more children to prepare to watch younger siblings more closely as they develop. Potential signs of autism can display even in infancy. On their website, Autism Speaks has a list of signals for parents to look out for as early as three or four months. Some of the potential signs include a lack of smiling at six months or an absence of gestures like pointing, waving, or babbling, at 12 months. Early detection, diagnosis, and intervention have been shown to positively improve the effects of the disorder in a child’s behavior.
When JoAnn Lomax, MSN, RN, supervisor of the patient relations department at Froedtert Hospital in Milwaukee, was diagnosed with breast cancer in July 2002, her twin sister, Mary Ann Mosley, MS, RN, was at her side. “Mary Ann was with me because I was not about to hear that news, good or bad, by myself,” Lomax explains.
Sisters Sherrill Jackson, RN, MHSA, CPNP (right) and Connie Orr
When her surgeon told her she had breast cancer, Lomax says she immediately got the worst headache of her life. Her sister had a similar reaction. “It was devastating to hear that she had breast cancer. It hit me between the eyes,” recalls Mosley, who is a clinical instructor in the college of nursing at Cardinal Stritch University in Milwaukee. “Even when [you’re a health professional] who works with cancer patients, it is still difficult to hear [when it happens to someone who is close to you].”
Fortunately, Lomax’s cancer was caught in the early stages by a mammogram. She had a mastectomy in August 2002 and then went through six months of chemotherapy. “In the journey through all of this, the only support I asked for and I wanted was from my twin sister,” she says.
Even though Mosley has been a nurse since 1971, her initial reaction to her sister’s diagnosis was fear.“The fear is still there,” she admits. But it has motivated her to become aggressively involved in helping to fight the disease. “Since this has happened to my sister I have armed myself with more information and knowledge and gotten more involved in the community of breast cancer awareness,” she says. “I have taken my head out of the sand. The more I work with this, the less fear is involved.”
As part of that work, Mosley has signed up to participate in the Sister Study. Conducted by the National Institute of Environmental Health Sciences (NIEHS), one of the National Institutes of Health, with additional funding from the National Center on Minority Health and Health Disparities, the Sister Study is the only long-term study in the U.S. of women whose sisters have had breast cancer. The researchers, who stress that this landmark study is not a clinical trial, plan to follow 50,000 ethnically diverse women for at least 10 years to learn how environment and genes may affect their chances of getting breast cancer.
Women are eligible to join the study if they are between the ages of 35 and 74; have a sister (living or deceased), related to them by blood, who had breast cancer; have never had breast cancer themselves; and live in the United States or Puerto Rico.
Sister Study participants receive a free kit containing all materials and instructions they will need. Initially, participants complete four questionnaires and a telephone interview, along with providing one-time samples of blood, urine, toenail clippings and household dust. The researchers will then follow up with the women once a year for the next 10 years. Sisters in the study who develop breast cancer over the course of the research period will be checked against a random sample from the cancer-free group for differences in exposure levels to biological and chemical agents such as insulin, solvents and pesticides.
According to Dr. Dale Sandler, the study’s principal investigator, “By studying sisters, who share the same genes, often had similar experiences and environments and are at twice the risk of developing breast cancer, we have a better chance of learning what causes this disease. That is why joining the Sister Study is so important.”
Wanted: Sisters of Color
Lomax and Mosley are African Americans. They have a family history of cancer, including a cousin who died of breast cancer. But in their immediate family, Lomax is the only member to have been diagnosed with any type of cancer.
“[The Sister Study’s] goals are to [examine] what the connection is between family members and cancer, how it manifests itself,” Mosley says. “It is something that needs to be done to figure out if this is a genetic link or if it is just happenstance.”
Both women are aware of the fact that racial and ethnic minorities are not well represented in many medical studies. “From my nursing background, I know that African Americans [are often reluctant to] participate in research studies,” Lomax says. “It is very important to take part in these studies. Even though cancer may be cancer, I still think contributing to the study will allow for data to be collected and analyzed so that if there is [some cancer-causing factor] that’s unique and specific to the African American community, it can be identified.”
Her sister believes there are a number of reasons why people in general–and people of color in particular–do not take part in research studies. “My opinion is that minorities do not become part of major studies, first of all, because of the time commitment that is involved,” Mosley explains. “Secondly, they have an attitude of: ‘If I don’t know, there is no problem.’ I would encourage people [of color] to participate, because with knowledge you have power. The more you know, the better off you are.”
Researchers from the Sister Study are making an intensive effort to reach out to minority women, including African Americans, Latinas, Native Americans and Asians. Initially, recruitment for the study started in four cities in fall 2002: Phoenix, Tampa, St. Louis and Providence, R.I. These cities were selected for their size and their geographic, ethnic and socioeconomic diversity. The study is now nationwide, including Puerto Rico, and is in the last year of its recruitment phase.
Having as diverse a sample as possible is critically important, because women of color are harder hit by breast cancer than their majority counterparts. Statistics show that while white women are more likely to develop breast cancer than minority women, the latter are more likely to die from the disease. They are also more likely to develop the disease at a younger age.
“In recent years, for women under the age of 45, African American women have become the highest [impacted] group,” explains Dr. Paula Scarborough Juras, who serves as the NIEHS’ project officer for the Sister Study. “More young [African American] women are not only getting breast cancer but they also quite often have more aggressive forms of the disease. Many people believe [the reason for this disparity] is that minority women have less access to health care–but [that is not the whole story]. There are actual [physical] differences in the [types of] breast cancer that African American women are getting, and we do not know why.”
In addition, Juras points out that the incidence of breast cancer in Asian women and Latinas who are immigrants to America is higher than in their countries of origin. “There are many pieces of evidence that suggest the environment is affecting whether [immigrant] women will get breast cancer or not in the United States,” she says.
Juras has American Indian great grandmothers on both sides of her family. And, she says, the statistics concerning American Indian/Alaska Native women and breast cancer are grim. “Fewer Native women get breast cancer, but they are more likely to die of it and they are more likely to be diagnosed at a more advanced stage of the disease. Again, we do not have all the evidence to determine why that is.”
Genetic mutations, such as BRCA1 and BRCA2 abnormalities, put some women at an increased risk for breast cancer. “But,” Juras says, “really only 5% or 10% of women diagnosed with breast cancer have those genetic mutations. Also, fewer than 20% of women diagnosed each year have a family history of breast cancer, so we know there must be more going on [than just] genetic tendencies. This data, taken together with other evidence, is very suggestive that the environment is playing a role.”
These racial and ethnic disparities have led researchers to try and enroll as many women of color as possible in the Sister Study. “We have worked really hard to have the 50,000 women in the study be representative of the women in the United States. In fact, we want [an even higher percentage of] minority women in the study than are represented in the U.S population,” says Juras. “The more diverse the women we study, the better chances we have of finding associations between how the environment and our genes may influence breast cancer. The more diverse the women are, the more diverse their experiences are–such as the jobs they have, the places they have been and the products they use.” And that means the morestatistical power researchers will have to detect real results, she adds.
How Nurses Can Help
The Sister Study is partnering with a number of cancer prevention and advocacy organizations to help with its recruitment efforts, includingthe American Cancer Society, the Susan G. Komen Breast Cancer Foundation, Y-Me National Breast Cancer Organization and Sisters Network, Inc. These groups are supporting the Sister Study by using their own resources and activities to encourage women to participate.
To reach out to women of color, the study is also collaborating with organizations like the National Black Nurses Association, the Association of Black Women Executives, Native People’s Circle of Hope, the Office of Alaska Native Health Research, the National Alaska Native American Indian Nurses Association, Redes En Acción (the National Hispanic/Latino Cancer Network), Lambda Theta Alpha Latina Sorority and the Sigma Lambda Gamma Latina Sorority.
Nurses are natural candidates to spread the word about the study, Juras emphasizes. “In general, nurses have such close contact with so many women in the community, seeing them in the office or running into them in the grocery store,” she says. “Nurses are also looked upon as knowledgeable people who inspire trust. When nurses learn about the study and get excited about it, they can communicate that excitement to the women they are in contact with in the community. Minority nurses in particular are very aware of the unique impact of breast cancer in their community.”
The Sister Study has created a variety of multicultural educational materials that nurses can use to create awareness of the study. They include a video (available with Spanish subtitles), “Ask Me About the Sister Study” buttons, and brochures or flyers targeted specifically to African American, Latina, Asian and Native American women. These resources can be distributed in doctors’ offices and clinics, at health fairs, at breast cancer events such as Race for the Cure, and in community locations such as hair salons, churches and senior centers.
“I think it is important for minorities to be involved [in the Sister Study], because in many of these studies there is a very low percentage of us that participates. Therefore, the information that is gleaned is really about the Caucasian population,” Jackson says. “We never get to find out if our case is unique. If we participate, more of the data that would come back would be relevant to us.”
Jackson became involved with the Sister Study as a member of the advisory board when the project first started. Many Breakfast Club members, she says, tested the materials for the study. “We did the kits, filled out the forms, so we could actually tell other women what was involved in participating,” Jackson explains. “Part of the reason I wanted to go through it was so I knew exactly what it was and what it entailed. Being on the advisory board gave me the opportunity to meet the people [running the study], and that gave me a lot of confidence [about the project].”
Now Is the Time
Jackson’s sister, Connie Orr, had no hesitation about joining the Sister Study once her sister told her about it. “I was very excited about it. Anything she would ask me to do, I know it would be a good thing and my answer would be yes,” Orr says. “With the Sister Study, it felt like you were going to be part of something that was going to lead to a better understanding of the causes of breast cancer. I was glad to help out.
“I feel like the Sister Study is asking very little of you to participate. It is not an invasive study,” she adds. “There is so much that you can’t do to help your sister [when she has breast cancer]. This is one way that you can help. I feel a little more empowered because I am making a contribution.”
According to Juras, the Sister Study researchers have worked hard to make the study as participant-friendly as possible. “We have gone to very great lengths to keep all the information people give us private and confidential. Even the Supreme Court cannot subpoena it,” she explains. “We also have made the study safe. Participants do not have to take any medications. We are not testing medications. We are not a clinical trial. We do not ask participants to make any changes in their daily lives. Our interest is to find out what is causing breast cancer.”
Approximately 25,000 women are enrolled in the study to date. “There is a real urgency now. We are in our last year of enrollment,” Juras says. “We are very excited about how many women have joined us, but we need to complete this stage and move forward. So it is urgent that women join us now.”
To learn more about the Sister Study, visit the Web site www.sisterstudy.org, or call toll-free (877)-4SISTER (877-474-7837).
Editor’s Note: Minority Nurse senior editor/editorial manager Pam Chwedyk is a breast cancer survivor whose two younger sisters are both participating in the Sister Study.
Last issue, Minority Nurse addressed infant mortality in minority communities, discussing some of the disparities, research, and solutions surrounding the issue. This piece was submitted as a supplement to “A Quiet Crisis: Racial Disparities and Infant Mortality”
Aim for a healthy weight. Get enough folic acid in your diet. Find effective ways to manage stress. Talk to your doctor about your family history. All very important information to maintain good preconception health, but as nurses know all too well, people don’t always follow good advice. But how about when the message is coming from someone you can relate to and trust—like a peer?
The U.S. Health and Human Services Office of Minority Health’s Preconception Peer Educator (PPE) program taps into the power young people have to positively influence each other’s behavior, by enlisting and training college students to become health ambassadors. PPEs—many of them nursing, public health, and social work students—organize events at college campuses, K–12 schools, and in the wider community to educate teens and fellow 20-somethings about infant mortality and to deliver the simple message that now is the time to take care of your health…for life.
Born out of OMH’s A Healthy Baby Begins With You campaign, launched in 2007 with the aim of raising awareness about infant mortality in minority populations, who suffer some of the highest rates, the PPE program highlights preconception health as the less-emphasized factor to influence birth outcome and maternal and child health. Science shows that in communities of color, health disparities begin early in life, so PPEs serve as messengers—drawing attention to the critical link between healthy behaviors in youth and improved maternal and overall health in adulthood.
The information is important for other reasons too. While many adolescents and young adults may be a long way from thinking about starting a family, about half of pregnancies are unplanned, which makes preconception health all the more pertinent. Poor health in the early years can also lead to chronic disease later in life, and learning about the long-term payoff of preconception health is not only a way to catch problems early but to curb health disparities in communities as a whole.
The pilot program started in 2008 with Morgan State University, Spellman College, Fisk University, Meharry Medical College, and University of Pennsylvania School of Nursing. The general objective was to tackle the high rates of infant mortality in the African American community by addressing the root causes much earlier in life.
Today, around 90 schools and almost 1,000 students have participated in preconception health trainings. PPEs who have completed the program say their efforts are making a difference in young lives, and the program has grown in popularity mostly through word of mouth.
“We’ve always been taught in the black community that when you get married and decide to have kids—that’s when you should start thinking about your body,” says 20-year-old PPE Atalie Ashley-Gordon, a University of South Florida student in public health. “But I learned that we were very wrong.
“Peers make a big difference in driving this message home,” she adds, because “I’m just old enough to be influential but just young enough to be credible. That’s what makes peer education so important.”
No secrets between sisters: The author (left) and her sister, Roslyn McConico Fisher, RN, BSN, chief clinical officer for Nursing Sisters Home Care in Haupauge, N.Y.
Does your family know your personal health history? Or is it your personal secret?
I recently found out that my latest routine mammogram revealed two one-centimeter nodules in my left breast. Alarmed by these results, I tried to recall whether or not I had a familial risk or predisposition to breast disease and breast cancer. I was so anxious, I needed to talk! The first person I called was my husband. He offered supportive words and reassurance, advising me to not panic. The second person I called was my younger sister Roslyn, who is also a registered nurse.
A few years ago Roslyn had a mammogram that revealed a cyst in her breast; it was treated and aspirated through a fine needle. At that time, Roslyn confided her diagnosis to me but made me promise not to tell Mom. Now, as I told her about my own health problem, Roslyn again tried to persuade me not to tell our mother, because “Mom will worry!”
Later, though, I thought more about my discussion with Roslyn. Against her advice, I decided to tell Mom and other family members about the result of my mammogram. Mom took the news very well and told me that she had had a benign nodule removed from her right breast over 20 years ago. My sisters and I never knew this! Breaking the cycle of secrecy for the first time, Mom told Roslyn and my three other sisters about her history of breast disease. For years, we had all been answering one question about our family health history incorrectly. That question is: “Do you have a family history of breast disease or breast cancer?”
For Nurses, Knowledge Is Power
This example of my family members keeping their personal health histories a secret is a familiar behavior in minority communities. From my professional experience as a public health nurse who has worked with African American and Latino populations for more than 15 years, I have observed that, for many reasons, people of color don’t share information about our health histories with our loved ones.
Often, culture plays a role in whether or not family members disclose information about diagnosis and illness to other relatives. For example, in the African American culture, especially among the older generation, the tradition is to “mind your business” and not discuss sensitive personal issues, such as health problems. Some minority patients try to shield their family members from what they perceive as embarrassing facts about their health, such as illnesses that stem from risky behaviors and poor health practices. They believe that revealing this information may bring shame, scorn or needless worry to their relatives.
Other barriers that can make it difficult for nurses to access and collect information from minority patients about a family member’s health history include poor memory and low health literacy. Many elders may have trouble recalling details or may not comprehend facts about their own diagnosis and illness, or that of other close relatives. Older persons may also regard their personal health history as “their business” and no one else’s.
Last fall, U.S. Surgeon General Richard H. Carmona declared Thanksgiving Day, November 2004, to be the first annual National Family History Day. Now in its second year, this initiative recognizes that the family health history is important for early identification, treatment and prevention of many diseases that are known to have a genetic link. This includes cancer, cardiovascular disease, diabetes, alcoholism and mental illness-all of which disproportionately affect minority populations. Genetic specialists, researchers and health care providers all concur that an accurate medical and family history is vital for assessing an individual patient’s health risks and predisposition to these serious diseases.
Armed with accurate knowledge of the family health history, the nurse can instruct and guide the patient in practicing good health behaviors, such as participating in screening for cancer, heart disease, glaucoma and diabetes. Nurses can also encourage their patients to take part in other primary health and wellness activities, such as exercise groups, nutritional counseling and smoking cessation support groups.
Therefore, nurses must assist and encourage their patients, with their significant others, to begin collecting and organizing health information and details about their relatives’ personal health histories, by doing face-to-face and telephone interviews and asking them to write the information down. Examples of information to be collected are current diagnoses or illness, age of onset, medications taken and allergies. Other types of information patients should obtain and record include instances of blood relatives, such as parents, grandparents and siblings, who have experienced or are experiencing similar diagnoses and illnesses. It is also important to list any relative who died before age 55, along with the cause of death.
The next step is to store the health history of the family members on a floppy disk or CD-ROM. As part of the Surgeon General’s initiative, the Department of Health and Human Services now offers a free computerized tool called “My Family Health Portrait” that can be downloaded at www.hhs.gov/familyhistory. Using this method, the histories collected can be easily updated and printed out as needed, so that the data can be made readily available to any health care providers your patients and their family members need to see.
Breaking the Silence
Prevention, diagnostic screenings and early detection and treatment are the keys to maintaining optimal health and wellness and eliminating health disparities. It’s time to break the cycle of secrecy among our family members. A lesson for my family and others can be found in the words of the poet Audre Lorde, who lost her life to breast cancer: “Your silence will not protect you.”
So let’s talk! As nurses of color, we can encourage our patients to talk and be honest and open with their family members, keeping in mind their privilege to keep their health information confidential. And even closer to home, sharing our own health histories with our family members is another vital link that can potentially save the lives of our loved ones, as well as future generations.
Alnisa K. Shabazz, RN, MS, is an assistant professor in the Department of Nursing and Allied Health Sciences at The Bronx Community College, City University of New York. She also leads health and wellness workshops for groups and individuals with actual or potential health care needs in various community settings in the New York City area.
More About the Surgeon General’s Family History Initiative
To encourage all Americans to learn more about their family health history, Surgeon General Richard H. Carmona, in cooperation with other agencies within the U.S. Department of Health and Human Services, has launched a national public health campaign, the U.S. Surgeon General’s Family History Initiative. Other federal agencies involved in this project include the National Human Genome Research Institute, the Centers for Disease Control and Prevention, the Agency for Healthcare Research and Quality, and the Health Resources and Services Administration.
Surgeon General Carmona has designated Thanksgiving Day as annual National Family History Day because it is the traditional start of the holiday season for most Americans. Of course, this doesn’t mean that families should literally be discussing their health histories while they sit at the dinner table passing the turkey. The point is to take advantage of occasions when the whole family is gathered together to begin the process of collecting and recording this vital information.
The computerized “My Family Health Portrait” tool, available in English and Spanish, is an easy-to-use resource that walks users step-by-step through the process of organizing a family tree and identifying common diseases that may run in their family. When finished, the tool will print out a diagram of the family’s generations and the health disorders that may have moved from one generation to the next. To ensure privacy and confidentiality, families can download the tool to their own computer, create their health history and then save it to a diskette or CD-ROM so that no one else has access to the data.
For more information, visit http://www.hhs.gov/familyhistory.
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