Fluid measure
A perometer is used to quickly and accurately measure limb circumference.
Professor Jane Armer studies women who suffer from lymphedema, a localized swelling of the arm or shoulder that may occur as a result of breast-cancer treatment. But what makes her especially unique is that Armer lives with lymphedema herself. Few researchers have such a personal understanding of the disease they study and the human subjects they encounter. Armer’s experience as a breast-cancer survivor coincides with her history of researching health promotion practices and beliefs. After years of studying chronic illness management, in 1997 she was diagnosed with breast cancer and developed lymphedema.
“I had intensive therapy and then specialized training in lymphedema management because there was little published research on management in the medical literature,” she says. Armer soon discovered that lymphedema, although a chronic condition that can have tremendous impact on a woman’s activities and quality of life, is both underdiagnosed and undertreated.
Lymphedema occurs when lymph nodes are removed or damaged, causing an excess of lymph fluid to develop in the surrounding area. Prostate cancer survivors sometimes develop lymphedema in their legs as a result of treatment that interferes with the lymph nodes in their groin.
Node removal or dissection during breastcancer surgery, fibrotic changes to the nodes after radiation treatments or post-surgical infections that damage the lymphatics can all lead to lymphedema.
“We focus on saving a person’s life and so we deliver acute treatment focused on eradicating the cancer — and rightly so,” Armer says. “As our treatments become more successful, there are more cancer survivors. In the past, we’ve focused on the fact that they are survivors and we have not looked at what they deal with after they survive acute cancer treatment. Now there’s more interest in cancer survivorship issues.”
Armer adds that more than 200,000 women are newly diagnosed with breast cancer each year and there are more than 2 million breast-cancer survivors in America today. Twenty to 40 percent of these women are at a lifetime risk of developing lymphedema as a result of their treatment, making management of lymphedema a growing concern.
In a practical sense, living with lymphedema takes some adjustment. Imagine not being able to buy off-the-rack fashions because your arm is too swollen to fit in the sleeve of a regular garment. Repetitive movements with the affected limb become difficult or impossible. Lifting heavy items is out of the question, and cold or hot temperatures make the swelling even worse.
The appearance of and physical limitations caused by lymphedema can dramatically affect a woman’s self-esteem and make her extremely self-conscious. Armer notes that even women who have relatively mild swelling have reported significant psychological effects due to the condition. Besides the immediate concerns related to lymphedema management, some women see the condition as a constant reminder of the cancer they’ve fought and the risk of recurrence.
Armer, like many other women who have lymphedema, wears a compression garment on her affected arm every day and sleeps in one at night. She uses a special massage technique, called manual lymph drainage, to help keep the swelling in check. She exercises regularly in a pool where the water supports and eases her movements. And she is extremely careful not to prick or cut her skin for fear of infection, which is common and serious in affected limbs.
As a result of her own situation and subsequent discovery regarding the lack of information available about lymphedema, Armer turned her academic eye to the subject in an attempt to raise awareness of the problem and identify the best treatment interventions to manage this chronic condition.
She began by conducting a simple measurement study of women who were receiving follow-up treatment for breast cancer at MU’s Ellis Fischel Cancer Center. Her subjects ranged from women who had been recently treated to those who were long-term breast cancer survivors. She found that 39 percent showed measurable changes in the size of their arms that could be attributed to lymphedema. Half of those subjects had no lymphedema diagnosis in their medical charts.
“That statistic gave us a foundation from which we could seek federal funding to look at the best ways to measure limb changes associated with lymphedema,” Armer says.
In the study that followed, she measured 40 subjects who had lymphedema and 40 who did not. A tape measure around the arm to document circumference, a standard water-displacement method and a new type of measurement using infra-red lasers to gain a very exact reading of limb-size changes were compared.
Although the water-displacement method has been commonly accepted as the “gold standard” of lymphedema measurement, Armer found several drawbacks to the technique and concluded that the most clinically friendly and reliable method involves measurement with a perometer.
This device is used to quickly and accurately measure limb circumference in order to manufacture special compression garments for lymphedema patients, and consists of a mechanical frame with laser beams that travels the length of the arm, examining the arm’s dimensions at 360 different points. A computer uses the laser-generated data to build a graphic representation of the limb and estimate fluid volume seconds later.
Another significant finding was that clinicians were not regularly measuring patients’ limbs prior to cancer treatment. Therefore, no baseline measurement existed with which to compare the arms’ size after treatment. Of the 40 subjects without breast cancer or lymphedema, Armer found many with asymmetrical arm size.
Indeed, in some healthy women, the nondominant arm’s limb volume was greater than that of the dominant arm, contrary to common assumptions. “That underscores the importance of knowing the individual patient’s normal limb volume before treatment,” Armer says. “We hope our work will lend credibility to the approach of documenting and measuring the arms before treatment.”
Armer’s current research project promises to be one of the most complete studies of lymphedema in medical history. The National Institute for Nursing Research has granted her $1.6 million, which was supplemented by a $317,000 grant from MU’s PRIME Funds research incentive program.
Her study of 300 women began in 2002 and continues through 2007. Armer also has an NIH grant pending that will allow her to follow patients for 7 years following their treatment.
Armer is enrolling women for the study after they are diagnosed with breast cancer but prior to treatment. Each subject is followed for 30 months, during which Armer’s team measures the subject’s limb volume to detect any changes and interviews the individual about various methods she uses to cope with her condition and maintain her quality of life.
“The 30-month follow-up gives us a validation of the occurrence of lymphedema in the face of current diagnostic and treatment methods,” Armer says.
After establishing current lymphedema incidence rates, she plans to begin researching optimal lymphedema management strategies and risk-reduction activities.
Currently the Lance Armstrong Foundation has awarded funding to pilot a behavioral education intervention for breast cancer patients at risk for lymphedema. The study began in January 2006 and will enroll and follow women diagnosed with breast cancer for 18 months following the pilot intervention.
“For health professionals, it is important to be aware that lymphedema is an ongoing issue. And we hope that women who have lymphedema become aware that what they experience is of concern and is no longer an invisible condition,” Armer says.
And until her goal is met, she will continue to focus on lymphedema risk reduction and treatment in both life and work.
Interdisciplinary involvement
The MU Health Communication Research Center (HCRC) is an example of a collaborative alliance that has both directly benefited the public and offered a new arena for continuing research possibilities.
At www.hcrc.missouri.edu, anyone with an Internet connection can read the latest health news, gather useful health resources, and learn about some of the collaborative research projects underway that focus on how communicators shape and influence health information.
Established in 2003 by Armer and Glen Cameron, professor and Maxine Wilson Gregory Chair in Journalism Research at the MU School of Journalism, the concept began when Armer served as chair of an MU Comprehensive Cancer Center Committee on cancer screening and sought Cameron’s advice on crafting media messages about that topic. The two researchers immediately saw possibilities for new projects.
“We both appreciate multidisciplinary collaboration,” Armer says. “We looked for ways we could work together because we appreciated what we brought to the table.”
Armer and Cameron soon co-authored a white paper on cancer communication as a potential topic for government research funding. Their efforts were rewarded with a two-year federal grant from the Centers for Disease Control and Prevention for the creation of a cancer communication center.
Initial funds were used to establish the Web site, hire a person to maintain and update it, and complete two pilot projects using the center as a tool for communicating and studying media messages related to teen smoking and breast-cancer screening among ethnic populations.
While Armer and Cameron forge ahead with the center as a source of information and public awareness, as well as a means to study public perceptions related to health information in the media, the HCRC provides a base for other researchers to conduct their own studies.
Although initial funds have run out, Armer is optimistic that the concentration of research activity surrounding the center will net a large grant to maintain the center, which will sponsor conferences and report on new medical research findings.
Armer is excited about a new aspect of the health communication field of study in which researchers at MU are joining with those at other institutions to explore how health professionals learn about nutraceuticals (the herbal and “natural” remedies sold to millions of consumers but not regulated by the government), what they tell their patients about them, and where they get information. The interdisciplinary research team is piloting educational modules for nurses and will create a multimedia program specifically for oncology nurses.
“We’re combining basic science research with communication and media presentation in the health professions community,” Armer says enthusiastically.
“Nursing and journalism are very complementary in goals and strengths,” she continues. “We bring a good fit to the table. Nursing involves health [education] background and patients’ perspectives, and journalism is about constructing messages for consumers and professionals, which is a different view than nurses generally take. We have positive synergy.”
That synergy will be nurtured this year as Armer and her journalism colleagues meet on a regular basis to review their progress and explore new collaborative possibilities. In some cases, Armer anticipates incorporating additional disciplines into current or developing projects.
Meanwhile, consumers will make more informed decisions as journalists and health professionals learn how to tailor messages for specific audiences.
“This is a wonderful example of what can be accomplished beyond what either of our disciplines can accomplish alone,” she says.
Working with students
Armer has always involved undergraduate students in her research studies. Her commitment to working with students is evident as she continuously involves students in the lymphedema project. Some 8 to 10 students work with Armer’s team each year.
“I believe this experience creates a long-term relationship with the students we involve in our research projects,” Armer says, “Student, faculty and staff mutually benefit from these experiences. Their involvement gives me great satisfaction.”