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July 24, 2012 • Volume 9 / Number 15

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COMMENTARY

Oncology Nurses: Leading from the Future

by Dr. Mary M. Gullatte

In my 34-year career as an oncology nurse, I've had the opportunity to witness firsthand the dramatic changes that have shaped the current state of cancer care. For instance, the first, second, and now a third generation of targeted therapies have changed cancer care significantly, as has the recognition that good patient care extends well beyond treating tumors and should continue long after active treatment is complete. Read more > >

A Conversation with Karen Stanley on the Importance of Communication in Palliative Care

Karen Stanley, an advanced practice oncology nurse who manages the Pain and Palliative Care Service at Stamford Hospital, a teaching hospital in Connecticut, recently spoke with the NCI Cancer Bulletin about her work and the informative conversations that she has with patients and their families.

FEATURES

A MESSAGE TO READERS

Oncology Nursing Series icon

Oncology Nursing Series and Special Issues

This special issue of the NCI Cancer Bulletin focuses on the topic of oncology nursing. Don't miss other articles in our oncology nursing series, and be sure to check out our other series collections on communication, technology, survivorship, advocacy, and global health.

Other recent special issues have focused on obesity and cancer research, adolescent and young adult cancers, and clinical trials enrollment.

NEWSSUPPLEMENT TO THE SPECIAL ISSUE

UPDATESSUPPLEMENT TO THE SPECIAL ISSUE

  • FDA Update

    • FDA Approves Test to Identify Colorectal Cancer Patients Who May Respond to Cetuximab
    • Public Workshop Focuses on New Guidelines for Pediatric Imaging Devices
  • Notes

    • University of Kansas Earns NCI Cancer Center Designation
    • NIH Seminar Will Address Palliative Care for Cancer Patients
    • NCI Dictionary of Cancer Terms Available for Your Website


Selected articles from past issues of the NCI Cancer Bulletin are available in Spanish.

The NCI Cancer Bulletin is produced by the National Cancer Institute (NCI), which was established in 1937. Through basic, clinical, and population-based biomedical research and training, NCI conducts and supports research that will lead to a future in which we can identify the environmental and genetic causes of cancer, prevent cancer before it starts, identify cancers that do develop at the earliest stage, eliminate cancers through innovative treatment interventions, and biologically control those cancers that we cannot eliminate so they become manageable, chronic diseases.

For more information about cancer, call 1-800-4-CANCER or visit http://www.cancer.gov.

NCI Cancer Bulletin staff can be reached at ncicancerbulletin@mail.nih.gov.

Guest Commentary by Dr. Mary M. Gullatte

Oncology Nurses: Leading from the Future

Dr. Mary M. Gullatte
Dr. Mary M. Gullatte

In my 34-year career as an oncology nurse, I’ve had the opportunity to witness firsthand the dramatic changes that have shaped the current state of cancer care. For instance, the first, second, and now a third generation of targeted therapies have changed cancer care significantly, as has the recognition that good patient care extends well beyond treating tumors and should continue long after active treatment is complete.

Cancer care is now a highly complex undertaking, and with the new advances in genomics, personalized therapies, bioscience, pharmacology, social science, and health information technology, it’s likely to become even more so.

As president of the Oncology Nursing Society (ONS), an organization with more than 35,000 members, I believe oncology nurses are prepared to lead across a multitude of settings: academia, research, and clinical service. In fact, we already are!

To shape its future activities, ONS recently issued a 2012–2016 Strategic Plan. In it, we talk about “leading from the future,” meaning having the vision of what cancer care needs will be 5 years from now. That vision will enable us to better prepare nurses to lead in the new health care future and to design care models to boldly embrace that future with confidence and success. (See the box below.)

Nurses play a crucial role in actively improving efficiency, cost effectiveness, safety, and quality to promote positive patient outcomes. The nurse is an integral member of the professional provider team, whose members must work together effectively to connect with patients and their families in a true partnership to achieve the best overall patient outcomes.

This special issue of the NCI Cancer Bulletin focuses on some of the trends and issues in oncology nursing today, including how physicians and nurses can partner together to improve care for cancer patients, the role of nurse navigators, and how nurses can help family members caring for cancer patients.

On the research side, bioethics is an issue that is growing in importance, particularly for oncology nurses involved in clinical trials. Finally, although caring for cancer patients can be rewarding, it can also cause burnout and compassion fatigue among nurses, an issue that more care centers are beginning to address.

By profession and preparation, oncology nurses promote evidence-based practices and patient- and family-centered care to enhance patient education, treatment, survivorship, and positive outcomes of care. We are preparing for and are ready to go boldly into the future to achieve a better health care system for our patients and the oncology interprofessional provider team.

Dr. Mary Magee Gullatte
President, Oncology Nursing Society

Institute of Medicine Recommendations: The Future of Nursing

The new health care future will require a robust, stable, and educated nursing workforce. To this end, ONS embraces the Institute of Medicine's (IOM's) The Future of Nursing report, published in 2010, and its four key messages:

  1. Nurses should practice to the full extent of their education and training.
  2. Nurses should achieve higher levels of education and training through an improved education system that promotes seamless academic progression.
  3. Nurses should be full partners, with physicians and other health professionals, in redesigning health care in the United States.
  4. Effective workforce planning and policymaking require better data collection and improved information infrastructure.

Special Issue: Oncology Nursing

Nurses and Physicians Collaborate to Improve Cancer Care

Medical team looking at patient chart
Close collaboration between advanced practice nurses and oncologists can improve patient care and help meet an increased demand for oncology services.

In the suburban St. Louis oncology practice of Dr. John Wilkes and his colleagues, every patient starting a new treatment regimen meets with a nurse practitioner (NP) for a roughly hour-long education session.

“That’s my first opportunity to introduce myself to patients…and establish a relationship with them, so that when I see them while they are in treatment, they already know who I am and that I am part of the physician’s team,” explained Melanie Maze, one of two NPs in the office.

NPs “are hands on in every facet of our endeavor,” Dr. Wilkes said. They help with patient care, develop survivorship care plans and review them with patients, serve as intermediaries between the physicians and other nurses in the office, and supervise the treatment room, where nurses administer chemotherapy and biotherapy.

Collaborative working relationships like the one between Maze and Dr. Wilkes, which are often legally cemented by a collaborative practice agreement, are not unusual.

And as the aging U.S. population and growing number of cancer survivors increase the demand for oncology services, oncologists are looking to advanced practice nurses—NPs and clinical nurse specialists—to help meet that demand. These nurses are joining forces with oncologists in community-based practices as well as in hospitals and academic medical centers to perform a variety of roles.

Advanced practice nurses not only help ease physicians’ workloads but also bring complementary skills, abilities, and perspectives to the table, adding breadth and depth to patient care, noted Georgia Decker, an NP in Albany, NY, and a past president of the Oncology Nursing Society (ONS).

“The delivery of cancer care has gotten very complicated, and it takes a whole team to deliver modern, high-quality care,” said Dr. Michael Goldstein of Beth Israel Deaconess Medical Center, who co-chairs the American Society of Clinical Oncology’s (ASCO) Workforce Advisory Group.

Easing Workforce Shortages

More than half of 226 oncology practices surveyed in the ASCO Study of Collaborative Practice Arrangements reported that they employ NPs or physician assistants (PAs), jointly known as nonphysician practitioners. (The study did not distinguish between NPs and PAs.)

The study, the results of which were reported last September in the Journal of Oncology Practice, showed that, in community oncology practices that employ NPs and PAs, patient satisfaction was universally high and physician and nonphysician provider satisfaction was generally high. The study also found that practices in which NPs or PAs worked with all physicians in the practice and saw a wide variety of patients had higher productivity.

The delivery of cancer care has gotten very complicated, and it takes a whole team to deliver modern, high-quality care.

—Dr. Michael Goldstein

ASCO’s interest in examining collaborative practices stemmed from the organization’s 2007 study that forecast a significant shortage of oncologists by 2020.

“One of the myths that the [collaborative practice] study dispelled was that patients may not be satisfied with NPs providing oncology care as part of a physician-NP team,” commented Dr. Dean Bajorin, an oncologist at Memorial Sloan-Kettering Cancer Center who co-chairs the Workforce Advisory Group with Dr. Goldstein.

A Win-Win for Patients and Physicians

“Collaboration improves patient care in a number of ways,” said Decker, who sees cancer patients and survivors in a primary care practice and also has a private nursing practice.

Oncology nurses are trained “at the bedside, and they pay very close attention to patients’ physical, spiritual, and emotional needs in ways that medical oncologists are not as focused on at times,” Dr. Wilkes noted.

And, whether in a community practice, hospital, or academic medical center, nursing professionals tend to play a greater role in communicating with patients and patients’ family members than physicians do. “Generally speaking, especially with the shortage [of oncologists], physicians are relying heavily on nurses and advanced practice nurses or PAs to keep that line of communication open,” said Decker.

Communicating with patients and their families is central to Karen Stanley’s job. A clinical nurse specialist and former ONS president, she manages the pain and palliative care service at Stamford Hospital in Connecticut. “By spending time with the patient and their family, I can learn things that are critical to making difficult decisions,” she explained.

At Memorial Sloan-Kettering, where Dr. Bajorin works, oncologists and patients alike have noted the benefits of having NPs on the inpatient bone marrow transplantation teams.

“Because NPs have an intimate knowledge of the treatment protocols and the patients, it provides better continuity of care,” Dr. Bajorin said. “Figuratively speaking, the NPs are there with their fingers on the patient’s pulse on an ongoing basis. And they are superb at transitioning and coordinating care to the outpatient setting.”

Maze pointed out that collaborative practice arrangements also offer financial advantages to oncology practices by freeing up physicians “to do things that have a financial impact on the viability of the practice,” such as seeing new patients or going to the hospital to consult on a case.

“There’s no question,” Dr. Wilkes confirmed, that collaborative practice arrangements allow physicians to see more patients. “But that can’t be the primary goal.”

Recipe for Success

The ingredients required for successful collaboration between oncologists and advanced practice nurses are not unlike those needed for a successful marriage. “Like any relationship in life, it’s about communication,” Dr. Wilkes said.

Mutual trust and respect are also critical. “The physician has to trust that you know what you’re doing, and give you the ability to practice fully within the scope of your practice,” Maze said. In a successful collaboration, Decker elaborated, “there is recognition of individual practitioners’ strengths and the ability to put those strengths into action.”

“[Having] not only respect for the other person as a person, but also respect for the skills that they have and the knowledge that they bring to the table” is important, asserted Stanley.

A close working relationship between the two providers is key, Dr. Wilkes emphasized. “If an NP and physician have a collaborative practice, but the patient is not routinely seen by both members of the practice, there is a potential for miscommunication,” he said.

A Need for More Training

While oncologists are looking to NPs to help fill gaps in delivering care, the advanced practice nursing field, too, is contending with shortages.

On top of a general shortage of NPs, few formal training programs in oncology exist for advanced practice nurses. (The largest such master’s degree program is at the University of South Florida.) “One of the challenges I see is that [oncology] NPs are receiving their education in an almost apprentice-like fashion in the community” from the physicians they work with, Dr. Bajorin noted.

Although ONS offers certification as an Advanced Oncology Certified Nurse Practitioner, most state boards of nursing do not recognize such certification. “Many states want NPs certified in the broader areas like acute care, rather than in subspecialties like oncology,” said Dr. Anne Belcher, an associate professor in the School of Nursing at the Johns Hopkins University.

That’s one of the chief reasons that master’s-level oncology nursing programs are scarce, explained Dr. Joyce Dains, who directs a post-graduate oncology fellowship for advanced practice nurses at the University of Texas MD Anderson Cancer Center. With only two or three fellows admitted each year, the application process for the year-long program is very competitive.

[In a successful collaboration,] there is recognition of individual practitioners' strengths and the ability to put those strengths into action.

—Georgia Decker

Financing such programs can be difficult. “The vice president for nursing [at MD Anderson] feels very strongly about having this education program available, so she has funded the fellowship” each year since it began in September 2006, Dr. Dains said. MD Anderson is also thinking about starting a residency program in oncology for advanced practice nurses hired to work at the cancer center, she continued.

Yet another challenge, Dr. Belcher noted, is that “there aren’t many oncology NPs to teach oncology NPs.” Most people with such advanced training prefer clinical practice to full-time teaching and can earn much more money in a health care setting than as faculty members, she explained. “It’s going to get worse with the graying of the faculty,” she concluded.

And the shortage of oncology-trained NPs could hinder the expansion of collaborative practice arrangements. “As much as we like the collaborative practice model, and as much as it works well, if we don’t have enough NPs to do it, it’s a moot point,” Dr. Goldstein said.

Elia Ben-Ari

Special Issue: Oncology Nursing

As Patient Navigation Expands and Evolves, Nurses Assume Many Roles

Arrow exiting maze
Nurses help patients with cancer navigate a maze of tests and treatments.

Nurses have always supported and guided patients with cancer through difficult times and often complex treatments. It’s what they do.

Now, in small but growing numbers, oncology nurses are joining the ranks of patient navigators—a diverse group of lay people and health care professionals who assist patients at all stages of cancer care, from screening and diagnosis to treatment and survivorship.

“In the labyrinthine health care system we have today, patient navigators play a critical role” in helping people gain access to care, said Dr. Steven Patierno, deputy director of the Duke Cancer Institute and a leader in the field.

Nurses can be particularly helpful after a patient has been diagnosed and during treatment. “This is when nurses really shine,” noted Dr. Patierno. “The coordination of care at this time is so important, and oncology nurses speak the language.”

Although navigation is still relatively new, some lessons are starting to emerge. Much of this knowledge has come from nurses who work as navigators or train and supervise navigators.

Extra Support

With a single nurse, the Billings Clinic Cancer Center in Billings, MT, launched a pilot patient navigation program in 2003. Today, the clinic has eight navigators dedicated to specific types of cancer and another focused on survivorship. All patients are offered navigation services.

“Every day is different,” said Deb White, an oncology nurse who helps patients with head and neck cancers navigate their care. “A lot of people see us as an extra level of support. They hear what the physicians have to say, and they call us later with questions.”

You will need Adobe Flash Player 8 or later and JavaScript enabled to view this video.

Produced and edited by Natalie Giannosa

Back in 2003, the nurse doing navigation primarily coordinated care for underserved patients, many of whom traveled long distances to the center. As navigation expanded, there were many success stories and some growing pains. Defining the roles and expectations of navigators has been an ongoing process, according to Karyl Blaseg, a nurse who manages the team.

In the past, the navigators tried to attend every medical appointment, but, as the number of patients rose, that became impossible. Navigators are now expected to be part of diagnosis and treatment-planning meetings, but they may choose not to attend appointments and catch up with patients at other times.

“We are fine tuning which activities the navigator should be doing on a daily basis,” said Blaseg. “After doing navigation for 9 years, you might think we would have perfected this. But it’s hard; navigators want to be all things to all people, and this is not possible.”

Harnessing Energy

The concept of patient navigation was developed in the late 1980s by Dr. Harold Freeman, a surgeon in Harlem in New York City. He wanted to help African American women with breast cancer gain access to potentially life-saving health care. This would be done primarily by using navigators to eliminate barriers to the diagnosis and treatment of early-stage disease.

The first navigators were lay people from Harlem who were sensitive to cultural and language barriers to care in that community.

“Navigation is a way to harness energy from a community that people can then use to help others in the community,” said Dr. Freeman, who runs an institute that trains navigators. Karen Schwaderer saw this phenomenon firsthand in 2004, when she started a navigation program for underserved groups in western Pennsylvania, such as the Amish.

Although some Amish distrust medicine, Schwaderer, a nurse, was able to provide health resources by working with an Amish woman who wanted to bring services to the area. “We let the community—through this woman—drive the outreach services from our hospital,” Schwaderer recalled.

The navigators in this NCI-sponsored program were health care professionals but not nurses. Their jobs were to connect minority, elderly, or low-income people with financial help and transportation.

From a cost perspective, lay people and others who are not nurses would likely do the work for less money than nurses, and would therefore be preferable to nurses, noted Schwaderer, who is now a navigator for women with breast cancer at West Penn Allegheny Health System in Pittsburgh, PA.

“The type of navigator should be driven by the needs of the individual program,” Schwaderer continued. “If a care coordinator would suit your program, then an oncology nurse would be appropriate. If your program is in need of resource navigators, those would not necessarily need to be nurses.”

She added, “As oncology nurses, we are all navigators.”

Sharon Francz, founder of a grassroots organization called the National Coalition of Oncology Nurse Navigators, agreed: “Nurses who are doing navigation know that it is an added benefit for a cancer program. And, hopefully, by getting patients to follow care instructions, nurses will help patients become survivors with an improved quality of life.”

New Navigation Assessment Tool

All patient navigation programs are unique, but medical centers often face the same challenges and barriers in trying to establish and expand navigation services. An NCI-sponsored working group has just released an assessment tool that could be used to develop patient navigation programs at community cancer centers.

Created in a matrix format, the Navigation Assessment Tool includes 16 core measures identified by the working group as essential for any navigation program. Cancer centers can use the measures to set goals and assess the progress of their navigation programs, according to the NCI Community Cancer Centers Program, which supported the project.

For a PDF of the Navigation Assessment Tool, click here.

Tailored Programs

Just as every patient is different, navigation programs should be tailored to the medical center and patient population, noted Patricia Strusowski, clinical director of the Cancer Program at the Helen F. Graham Cancer Center at Christiana Care Health System in Newark, DE.

“But all navigation programs share the same barriers and challenges; we’re all kind of going through this together,” she added. To help people in the field evaluate their programs, Strusowski and her colleagues in the NCI Community Cancer Centers Program (NCCCP) just released a navigation assessment tool with 16 key components of a navigation program. (See the sidebar "New Navigation Assessment Tool.")

A question in the field is whether to have a single navigator follow patients through to survivorship or to use a team model. At the Graham Cancer Center, patients are transferred from treatment navigators to survivorship navigators once they have completed therapy.

Patients in survivorship mode “have a different mindset—they want to know how to eat better and exercise more,” said Strusowski, adding, “Treatment navigators can’t hold on to these patients forever, because the case load would be too high.”

Pairing Nurses and Community Health Workers

Leaving the hospital can be a difficult transition for some cancer survivors. A pilot program being tested in Texas could help support survivors in their homes through the collaborative efforts of oncology nurse navigators and community health worker students at the Houston Community College Coleman College for Health Sciences.

“This would be an extension of oncology nurse navigation from the hospital out into the community,” explained Dr. Amy Deutsch, the advanced practice oncology nurse at Memorial Hermann Healthcare System, the largest nonprofit health care system in Texas.

During a recent clinical training session, three oncology nurse navigators mentored community health worker students through the phases of the cancer care continuum—from screening to treatment interventions to supportive care. The students were selected in part for their familiarity with the cultural traditions of the neighborhoods they would serve.

The pilot program, which is in its infancy, illustrates another way that nurses are playing a role in the evolution of patient navigation. A goal of the program is to develop new resources for cancer survivors in the community, particularly as hospital stays are being shortened.

“Many patients feel very scared when they leave the ‘protective arm’ of the hospital,” said Dr. Deutsch. “This collaboration could provide a way to extend that protective arm a little bit further.”

Shaping the Future of Navigation

Few studies of the cost-effectiveness of patient navigation or the benefits to patients have been published. Without much data and given the current economic climate, the future of patient navigation seems to be uncertain.

Nonetheless, many in the field are optimistic. Some point to a new requirement for accreditation by the American College of Surgeons Commission on Cancer: by 2015, cancer centers must provide patient-navigation services.

“Our patients have told us that having a navigator has made all the difference in the world to them with regard to their treatments,” said Strusowski.

Dr. Patierno, who has developed training for navigators, believes that navigation is here to stay, though it is unclear what it will look like.

“Because cancer care is so complicated, there’s no question that everyone, regardless of income level, could benefit from navigation,” he said. “The original intent of patient navigation was to help people overcome barriers, though. Everyone will benefit from navigation, but the underserved will benefit the most.”

Edward R. Winstead

Evaluating Patient Navigation

The largest study to date assessing patient navigation is expected to report results later this year. Sponsored by NCI's Patient Navigation Research Program, the study included more than 10,000 participants from diverse racial and ethnic groups and asked a number of questions related to navigation. The navigators in the study were primarily lay people, but nurses played a role as supervisors.

The findings will indicate that patient navigators assist people in overcoming barriers to health care and also help people who are at risk of "falling out" of the system stay in the system, according to Dr. Martha Hare of NCI's Center to Reduce Cancer Health Disparities.

"Navigators are great at overcoming barriers," said Dr. Hare. "They are also tenacious. They engage and educate people who are at risk of being lost in the health care system, especially people who may not speak English or who may have test results that are difficult for a lay person to understand."

Special Issue: Oncology Nursing

Innovative Program Aims to Improve Support for Cancer Family Caregivers

Drs. Laurel Northouse, Barbara Given, Joy Goldsmith, and Elaine Wittenberg-Lyles
Faculty members of the family caregivers course (from left, Drs. Laurel Northouse, Barbara Given, Joy Goldsmith, and Elaine Wittenberg-Lyles)

The man was 56 when he was diagnosed with acute myelogenous leukemia (AML). The prescribed treatment for the AML was a stem cell transplant. With her husband undergoing a grueling treatment and recovery, his 53-year-old wife suddenly became his full-time caregiver. The wife had her own health problems as well. Several years earlier she had undergone heart bypass surgery after suffering a heart attack. Even so, she continued to smoke.

According to a case report on the couple’s travails, the wife “struggled to maintain hope for the transplant's success while living with the constant uncertainty of her husband's survival. Although she complained little, when asked, she reported severe emotional distress, significant fatigue, sleep impairment, and difficulty maintaining her focus and energy throughout the transplant trajectory.”

While much of the discussion around cancer focuses on new treatments and their impact on cancer patients, until relatively recently, family members of cancer patients have often gotten lost in the shuffle.

“Family caregivers provide the vast majority of care for people with cancer across all phases of illness,” said Dr. Betty Ferrell, a leading researcher on nursing and cancer palliative care at City of Hope Cancer Center in Duarte, CA. “Yet they are often unprepared for this task and undervalued for their care.”

“Family caregivers can really struggle,” added Jo Hanson, an oncology nurse and senior research specialist at City of Hope.

And caring for loved ones with cancer is only getting harder. “Patients are being discharged when they are much more acutely ill,” Hanson said.

Oncology nurses and social workers are typically caregivers’ first line of support, Hanson explained. So it’s no surprise that oncology nurses represent the largest portion of participants in an educational program called the Family Caregiver Project, for which Dr. Ferrell is the principal investigator and Hanson the project director.

The NCI-funded program is intended to provide oncology care professionals with the tools and information needed to help cancer family caregivers care for themselves and their loved ones.

Cancer centers have a tremendous opportunity to create models of family support,” Dr. Ferrell said. “With education and support, family caregiving in cancer can also be an experience of profound meaning, as family members are able to provide compassionate and competent care.”

Setting Realistic Goals

The 5-year project is composed of four 3-day courses, with leading experts providing the most recent evidence on how to support and care for family caregivers. Each 3-day course covers the four quality-of-life domains: physical, psychological, social, and spiritual well-being.

Multidisciplinary teams—often consisting of an oncology nurse and a social worker, but also administrators, dieticians, psychologists, and physicians at times—must apply to attend the 3-day course. Each course has a new crop of roughly 100 participants. The first two courses were held last year, and the third was held earlier this month. All told, 317 people from 39 states have taken part in the program, Dr. Ferrell said.

Each course has a similar agenda, Hanson explained, although the second and third installments have changed somewhat based on participant feedback. Fueled by comments from participants in the first two programs, for example, this month’s program included more content on developing caregiver support groups and improving communication between caregivers and the treatment team.

As part of the application process, each team must develop goals they want to accomplish after attending the program, typically changes or initiatives that they would like to implement at their own institutions.

Family caregivers provide the vast majority of care for people with cancer across all phases of illness.

—Dr. Betty Ferrell

Their goals, however, have to be realistic and practical, explained Dr. Polly Mazanec of Case Western Reserve University, a project faculty member.

“We don’t want them tackling something we know could never happen,” she explained. “We want them to focus on what is doable at their center. It might be a 1-day workshop for caregivers that’s offered every month, a half-day class, [or] starting additional support groups. It’s about weighing great ideas versus what is feasible, because we want them to be successful.”

During the course, participants’ goals may change based on what they learn and discussions with project faculty, Hanson explained. Participants must submit updates on their progress at 6, 12, and 18 months after completing the course, and they can revise their goals as they go along. They can also get feedback from faculty members at any time.

The Evidence for What Works Best

Rebecca Fujinami, an oncology nurse at City of Hope, and a colleague attended the first course hoping to find ways to strengthen a study they are part of involving lung cancer patients and their family caregivers.

One of their goals was to improve the tools and resources they provide to caregivers as part of the study’s intervention component. “We wanted to make sure that we’re really headed in the right direction, to make sure that what we provide is based on the latest research,” Fujinami said.

The course has an added benefit, she continued. “It really connects you to the best people doing [caregiver] research.”

Those sorts of connections are one of the byproducts the project team hopes to foster.

“We’re really striving to form a national network,” Hanson said. With a nationwide web of project alumni, she continued, “they can contact each other, learn what each is doing that works or what kind of new resources they are finding, and develop new collaborations.”

An initiative like this was sorely needed, Fujinami said. The health of cancer patients and their caregivers are intertwined, and multiple studies have indicated that the better family caregivers fare in the four quality-of-life domains, the better patients do in terms of quality of life and even health outcomes.

Carmen Phillips

The Family Caregivers Project is funded by a grant from NCI (R25CA132664).

A Source of Support for Family Caregivers

There are many ways that oncology nurses and other members of the care team can help family caregivers. One of the most important, stressed Dr. Mazanec, is taking a moment with the caregiver to assess how they’re doing. “Just something very basic,” she said. “Are they taking care of themselves? Are they eating and sleeping? Are they as psychologically strong as they could be?”

Referring caregivers to national and local resources for support is extremely important, Hanson stressed.

“There are so many excellent resources available,” she said, including materials developed by NCI and CancerCare, and City of Hope’s own website. Many communities also have services to help caregivers, including support groups, hospice care, and financial-aid services.

The following websites also have resources that can be helpful to family caregivers*:

Bereavement

Assisted Living/Hospice

Individual/Family Counseling

Legal/Financial Assistance

Support

* Excerpted from “Resources for Family Caregivers,” by Rebecca Fujinami et al.

Special Issue: Oncology Nursing

A Balancing Act: Nursing and Ethics in Clinical Trials

White rocks on wooden balance beam.
Nurses working on clinical trials must balance their obligations to patients with their obligations to research.

Clinical trials straddle the worlds of laboratory research and patient care. From research nurses who help manage trials to advanced practice nurses focused solely on patient care, oncology nurses involved in trials bump up against a host of ethical issues not encountered outside the world of clinical research.

“As nurses, our professional obligation is to the patient and providing the best possible clinical outcome for that patient,” said Dr. Connie Ulrich, associate professor of nursing and bioethics at the University of Pennsylvania.

But clinical trials are run to develop new knowledge to help others, not for the benefit of individual participants (although participants might benefit from the study), and “ethical issues can overlap to some degree. As a nurse, our obligation is still to the patient, but we also have obligations to the research. It’s a balancing act,” Dr. Ulrich added.

Uncovering Misconceptions

Although some participants may benefit from taking part in a trial—even attaining a cure in some cases—no promise can ever be made that an experimental treatment will benefit any one participant.

A trial’s principal investigator and support staff, including nurses, must explain this to potential participants through the informed consent process. Even after consenting to take part in a trial, however, many patients remain under the impression that the research team enrolled them for their personal benefit—an error called therapeutic misconception.

This widespread misunderstanding can cause ethical discomfort for nurses, noted Dr. Ulrich. “I have found that informed consent seems to be a major concern for nurses—whether [they think] patients are adequately prepared to undertake the research, and how to best prepare them for that research.”

Informed consent seems to be a major concern for nurses—whether [they think] patients are adequately prepared to undertake the research, and how to best prepare them for that research.

—Dr. Connie Ulrich

On the positive side, explained Dr. Clare Hastings, chief nurse officer at the NIH Clinical Center, nurses are uniquely positioned to discover whether patients harbor therapeutic misconception and to help them better understand the purposes of a trial.

“A person going into a trial may think: “It’s research; it’s got to be something that’ll help me,’” said Dr. Hastings. “Because a nurse goes through a lot of conversations with that person about the process of participating, and what that participation will require, they may be the one on the clinical team who uncovers that [person’s misconception].”

“The public trusts nurses so much that they feel comfortable asking them [questions such as: ‘What’s the benefit to me?’],” said Dr. Ulrich. “My worry is, do nurses have the knowledge and expertise to address those questions, and I’m not sure that they always do.” Most nursing school curricula do not cover issues nurses might face in caring for patients participating in clinical research. (See the box below.)

Protecting the Patient’s Investment

This gap in nursing education can cause ethical difficulties not only because nurses may not feel comfortable discussing trials or helping patients work through the consent process, but because patient care within a trial has to be more regimented and more documented than normal clinical care, explained Dr. Hastings.

To support a patient’s participation, “a nurse has to have very specific timing [for data collection], to do certain types of complete documentation…. If you don’t do that correctly and the data collected are not valid, that person’s investment could be lost,” she said. “That really is an ethical issue, because how can you allow someone to participate and then essentially drop them out of the analysis because [you] didn’t follow the protocol?”

Although clinical research nurses receive substantial on-the-job training in these issues, many clinical bedside nurses, who often help with blood draws and other tests, may not. “Those of us in clinical research recognize that it’s important that, say, blood be drawn at a particular time because the research being done related to the metabolism of that drug is tied to getting that sample on time,” said Annette Galassi, a nurse and public health advisor with NCI’s Office of Communications and Education.

“But if you don’t have clinical research in the forefront of your mind, you may not recognize that,” since there’s much more flexibility in regular clinical care about when things can get done, she added.

Improving the Patient Experience

Dr. Sandra Mitchell, a nurse scientist and program director in the Outcomes Research Branch of NCI’s Division of Cancer Control and Population Sciences, sees access to oncology nurses as an ethical imperative in clinical trials.

Many people who may not receive any direct therapeutic benefit from trial participation have an improved patient experience as a result of the extensive contact with members of the health care team during the course of the trial, explained Dr. Mitchell.

It's an ethical obligation that all patients participating on a trial have sustained access to an oncology nurse.

—Dr. Sandra Mitchell

People enrolled in a trial “typically get very expert and sustained attention, including attention from oncology nurses, and, as a result of the supportive care components, can often have improvements in symptoms and sense of well-being,” she said. “I see improving the patient experience for those participating in a clinical trial as an important ethical obligation.”

Oncology nurses also play an important role in helping patients manage known and new side effects from experimental treatments during a trial. This can be vital when patients achieve a level of tumor control in a trial but may need to have side effects carefully managed and monitored to allow them to remain on that treatment, said Dr. Mitchell, who is helping to develop better systems to collect patient-reported outcomes, including symptomatic treatment toxicities.

“I think it’s an ethical obligation that all patients participating [in] a trial have sustained access to an oncology nurse. That’s an important health policy issue, particularly in today’s [environment] of shrinking resources and expanding need,” she stressed.

Easing Transitions of Care

Unfortunately, many patients, especially those in early-phase trials, eventually have to leave a trial because their cancer progresses or they experience dangerous side effects. If no other experimental options exist, that often means a transition to palliative or end-of-life care.

“There are issues that are unique to research that nurses struggle with,” said Dr. Christine Grady, chief of the NIH Clinical Center’s Department of Bioethics. “When is the time to take somebody off a research trial? Is this really the best thing for this person to continue to do? How do you transition somebody from a research trial to something else—something new, or to hospice, whatever the next step is?”

Oncology nurses can help alleviate the psychological distress that can arise from such transitions—and ease ethical discomfort felt by the patients, their families, and the health care team—by ensuring that such transitions are not abrupt, explained Rose Ermete, coordinator of the Oncology Nursing Society’s Clinical Trial Nurse Special Interest Group.

“The time for preparing somebody for [a transition] isn’t when they progress. When you approach patients about oncology treatment and research, you have to lay the foundation for them so that they’re prepared,” she said. “If all of a sudden you say, ‘that’s it, there’s nothing more we can do for you,’ that would not go well. But starting that discussion early as opposed to later allows them time to think and allows for a smooth transition,” she added.

When is the time to take somebody off a research trial? Is this really the best thing for this person to continue to do?

—Dr. Christine Grady

Some of the hardest conversations occur when a patient experiences substantial benefit from a new drug but also experiences side effects that don’t cause outward symptoms, such as reduced liver functioning, that makes it unsafe to continue taking a drug that may have seemed like “an answer to [that patient’s] prayers,” said Ermete.

“A drug can cross over from being beneficial to being harmful, and you have to prepare patients for that point throughout their journey,” she continued.

Nurses can alleviate some stress by explaining how much state-of-the-art supportive and palliative care can do to relieve pain and other symptoms associated with cancer and its treatment, added Dr. Mitchell. Sometimes patients faced with a transition to palliative care say “I don’t want to stop active treatment,” said Dr. Mitchell, “and I say, palliative care is a very active treatment approach! It can be a very reasonable choice for people at any point along the cancer treatment continuum, and oncology nurses have a key role in helping people learn what that choice represents, and what kind of therapies are available to them with aggressive palliative care.”

For many patients, the transition away from active tumor-directed treatment or trial discontinuation also involves a transition back to care in their community. “Facilitating a smooth transition across settings and care providers is a tremendous responsibility and can be a labor-intensive process, but at the same time a smooth transition is incredibly important in alleviating the psychological effects of disease progression and trial discontinuation,” stressed Dr. Mitchell.

“Oncology nurses, including nurse practitioners and clinical nurse specialists, have an important role in coordinating the transition of services, and it’s the kind of work at which oncology nurses excel," she said. We’re moving [patients] to that next set of treatment goals, but in a way that really preserves their autonomy and sense of control. That’s really the heart of what we try to do.” 

Sharon Reynolds

Teaching about Trials

In 2009, while helping NCI find ways to improve the clinical trial system, Annette Galassi and her colleagues in NCI’s Office of Communications and Education “started to think about the fact that nurses could really be a powerful force in raising the level of awareness about clinical research with patients,” said Galassi.

The important question that arose for the team was: Had nurses been taught enough about clinical research to be able to teach their patients?

“We [realized] that we learned very little about clinical research and clinical trials when we were in nursing school,” she recalled.

With colleagues from NCI’s Center for Cancer Research and Division of Cancer Prevention, as well as the NIH Clinical Center and the Johns Hopkins School of Nursing, the team collected the opinions of nursing school faculty members, hospital staff development directors, nurse executives, practicing nurses, and a focus group of deans from 28 nursing schools.

“While everyone [agreed] that nurses need to know more about how to care for clinical research participants and the issues surrounding clinical research, the nursing school faculty didn’t have the expertise to teach this content, and there wasn’t a whole lot of room in the curriculum to add it,” said Galassi.

The schools did say they would be interested in such a class if they had access to a package of materials they could use “out of the box” to add to an existing course. The team developed an educational package, including exercises, handouts, and test questions.

In June, they approached the deans and directors of six nursing schools near NIH about collaborating on a pilot of their content. To their pleasant surprise, the reaction was, “Sign us up!” said Galassi. The team will work with the nursing schools this fall and in the spring of 2013 to test and refine the class materials.

“We believe that every nurse should have beginning-level competency about clinical research so that he or she can appropriately care for these patients and effectively answer a patient’s questions about clinical research participation,” she concluded.

Special Issue: Oncology Nursing

Emotional Rescue: Addressing Compassion Fatigue in Oncology Nursing

Nurse consoling a colleague
Recognizing the symptoms of compassion fatigue is the first step in treating the condition.

People who choose a career in nursing understand that there are many rewards in the profession and that they can expect to work hard. The hours may be long and workplace conditions may, at times, be grueling.

What many nurses don’t expect is that their relationships with patients and patients’ families involve a special kind of work, a type of often-taxing emotional labor. Too many of these experiences without healthy recovery can lead to compassion fatigue, a combination of secondary traumatic stress and burnout.

“Secondary traumatic stress is when caregivers suffer from witnessing or providing care to someone who is directly experiencing trauma. Burnout is the perception of work demands exceeding resources,” explained Dr. Patricia Potter, who directs research for patient care services at Barnes-Jewish Hospital in St. Louis. “Combined, compassion fatigue results in an array of symptoms that can intrude upon caregivers' lives and lead them to want to avoid the patients they must care for,” she continued.

Nurses who experience compassion fatigue usually don’t know what they are experiencing; they just know that they don’t like nursing anymore. They may even want to leave the field. They don’t feel sympathy for their patients and may be emotionally numb. Some become hostile toward co-workers, and many feel cynical.

Research has shown that there may be a relationship between the symptoms of compassion fatigue and the risk of committing medical errors. And, unsurprisingly, numerous studies have found that when nurses lose enthusiasm for their work, patients are less satisfied with the care they receive.

Fortunately, there are programs and tools that can help nurses recover from compassion fatigue relatively quickly. A crucial first step is to recognize the symptoms of compassion fatigue and to understand that it is normal.

Emotional Withdrawal

Compassion fatigue affects caregivers when they help someone through a traumatic or life-threatening event without acknowledging their own physical and emotional needs.

Emergency first-response teams, mental health professionals, and medical professionals who work in fields such as oncology are particularly at risk for compassion fatigue. The risk goes up if someone works in an inpatient setting, which presents more opportunity to become emotionally attached to patients facing death.

According to various studies, at least one-third of nurses who work in high-risk settings may be suffering from compassion fatigue at any given time.

If someone has gone through caring for two or three patients who have suffered a cancer recurrence and died, those are the nurses who may need our help.

—Brenda Nevidjon

“Some of the clues are that they don’t smile anymore, they don’t spend as much time in patient rooms as they used to,” said Brenda Nevidjon, a professor in the nursing program at Duke University and former president of the Oncology Nursing Society. “Other clues are when people start calling in sick, being late, or just not engaging in typical activities. You see them pull away.”

Research has shown that younger nurses and nurses who have more education and higher levels of certification may be at greater risk for developing compassion fatigue.

Nevidjon, whose research focuses on cultivating leadership skills in nurses, says that this relationship makes sense. In 2010 she gave a presentation as part of the Oncology Nursing Society’s Leadership Development Institute to help nurses understand the risk of burnout and compassion fatigue and how these troubling conditions can be avoided.

“Nurses are the last to say, ‘I need help’,” Nevidjon said. “We’re always willing to offer help, but to ask for help is very hard.”

Learning Self-Care and Reflection

When nurses have the courage to ask for help dealing with emotional stress at work, it’s important for their managers and hospital administrators to have appropriate support systems in place.

Dr. Ann Berger, chief of the Pain and Palliative Care Service at the NIH Clinical Center, faced this situation less than 2 years ago, when multiple groups of nurses and physicians contacted her staff after a rash of patient deaths and the deaths of several clinical staff members.

“We couldn’t handle this alone; the need was too great,” Dr. Berger said. So, she formed a work group from various hospital departments and the NIH Office of the Director to develop a plan.

Their first step has been to assemble a volunteer group of approximately 40 staff members at the NIH Clinical Center who will receive training to conduct debriefing sessions for hospital staff who are struggling with emotions on the job. Pairs of volunteers will customize a plan for each person who requests help and walk them through the process. Later this fall, the clinical center plans to begin Schwartz Rounds, a forum where clinicians can talk about emotionally difficult experiences at work. (See the box titled "Treating Compassion Fatigue.")

Dr. Potter encountered a similar situation nearly 3 years ago when two nurse managers from her hospital’s outpatient infusion centers came to her with concerns about burnout.

Members of the compassion fatigue team at Barnes-Jewish Hospital.
Barnes-Jewish Hospital’s compassion fatigue team includes (from left to right) Marty Clarke, cancer psychiatry consultations service; Kathleen Walton, social worker; Dr. Julie Berger, chaplain; Brent Brazell, human resources; Dr. Patricia Potter, director of research and patient care services; and Cathy Powers, clinical nurse specialist.

Dr. Potter surveyed the oncology nursing staff using a 30-point scale instrument called ProQOL R-IV and found that a significant proportion of the nurses scored in a range indicating compassion fatigue. She sought the guidance of Dr. Eric Gentry, a traumatologist who has worked with emergency first-responders and mental health professionals, including those who assisted with recovery efforts after the terrorist attacks of September 11, 2001.

Dr. Potter and her colleagues implemented a pilot program among the oncology nurses at the Siteman Cancer Center, the NCI-designated cancer center affiliated with Washington University and Barnes-Jewish Hospital. They used a program based on Dr. Gentry’s Accelerated Recovery Program, which includes a train-the-trainer session, techniques for relaxation, and exercises to remind nurses why they became nurses in the first place.

Six months after the intervention, the oncology nurses at the Siteman Cancer Center had significantly reduced symptoms of compassion fatigue and felt rejuvenated at work. The results were so encouraging that Dr. Potter expanded the program hospital-wide earlier this year. The program teaches participants to care for themselves, how to reduce the body’s response to stress, and to recognize that the most that they can do is their best, and no more. All of these help lessen the symptoms of compassion fatigue, noted Dr. Potter.

It’s Okay to Struggle

Dr. Potter says that one of the most valuable exercises they offer is called The Silent Witness. Everyone in the group has an index card on which they write three negative effects that caregiving has had on them. Participants then circulate around the room sharing their cards with each other, reading the notes in silence.

“What they see is that everyone has the same symptoms,” Dr. Potter said. “They realize that what they have been feeling is normal. They may have been hesitant to recognize these issues before, because they felt guilty about their emotions and didn’t know what they might mean. This exercise teaches them that they are not alone.”

When Dr. Potter asks workshop participants if they’ve heard of compassion fatigue before, usually only a few people raise their hands, she said.

That may change as nurses and nursing school faculty members become more familiar with the term and with the consequences it can have, both for staff retention and for nurses who may find themselves losing a sense of purpose in their career because of it.

“We have to pay attention to each other,” Nevidjon says. “If someone has gone through caring for two or three patients who have suffered a cancer recurrence and died, those are the nurses who may need our help. We need to make it safe for them to ask for it. And we need to have a venue where they can express their grief and deal with loss.”

Brittany Moya del Pino

Treating Compassion Fatigue

“The treatment for compassion fatigue has to do with communication and communication skills,” Dr. Ann Berger said. “It’s about self-care and self-reflection.”

Self-care includes getting exercise, eating well, and getting enough sleep. But it also includes maintaining hobbies, friendships, and interests outside of work.

Some of the tools the NIH Clinical Center pain and palliative care staff have used to help clinicians manage grief and emotional overload include art therapy, healing gardens, and journaling.

Other interventions and programs that deal specifically with compassion fatigue include

  • Mindfulness-Based Stress Reduction: In a series of classes, participants learn how to analyze their physical perceptions from head to toe—what they smell, if they have any aches or pains, and if they are hot or cold. These exercises help people block out thoughts about what happened in the past or worries about what may happen in the future so they can better understand and respond to their sources of stress.
  • Accelerated Recovery Program: Developed in the 1990s by Drs. Charles Figley and Eric Gentry, this program helps participants develop self-management plans and learn self-regulation skills, which may help nurses control symptoms that are triggered by the sympathetic nervous system in response to stress.
  • Schwartz Rounds: Developed by the nonprofit Schwartz Center for Compassionate Healthcare, this program is held once or twice a month and allows clinicians the opportunity to share their most emotionally difficult experiences at work and offer each other support, with the help of a trained facilitator.

Hospital administrators who want to develop a compassion fatigue program for their clinical staff would do well to work with an experienced professional, rather than improvising on their own, Dr. Patricia Potter advised.

“It makes a big difference to have professional guidance in this area,” she said. “You can’t have an effective program without having a sense of what is at the root of an individual person’s compassion fatigue, and linking that with appropriate interventions.”

A Conversation With

A Conversation with Karen Stanley on the Importance of Communication in Palliative Care

Oncology nurses have contributed to the evolving field of palliative care. Also known as supportive care, palliative care is increasingly being integrated into cancer care soon after diagnosis. Karen Stanley, an advanced practice oncology nurse who manages the Pain and Palliative Care Service at Stamford Hospital, a community-based teaching hospital in Connecticut, recently spoke with the NCI Cancer Bulletin about her work and the informative conversations that she has with patients and their families.

How did you get involved in pain management and palliative care?

Karen Stanley
Karen Stanley

I’ve practiced oncology nursing for 31 years and am oncology certified at the advanced level, as well as board certified in pain management. The issues faced in working with oncology patients across the illness continuum led naturally to a deep interest in palliative care, which has always been part of my practice in some form. I moved primarily into the palliative care arena 6 years ago. Although I currently have administrative duties, a good 75 percent of my time is spent seeing patients, and approximately 60 percent of patients referred to our service are oncology patients.

Having a background in oncology gives me a huge advantage. Since the Palliative Care Service works closely with all the practitioners at [Stamford Hospital’s] Bennett Cancer Center, my background in oncology affords me greater understanding of the patient and family issues and more opportunity to move with patients across the continuum of care, from the start of treatment until death.

What do you, as an advanced practice nurse, bring to the working relationship you have with physicians?

From my perspective, one of the most important things that I bring is an ability to speak to the reality of the current prognosis. It’s very easy as an oncologist to want to do the best you can for your patient, and that often translates to treating as long as possible with active therapy.

My job in some instances is to ask: “Where are we in the continuum of care, and what are the advantages and disadvantages of continuing down this road?” In many cases the patient, a family member, or the oncologist will ask this question.

However, I feel it is part of my role to raise these questions when the patient is losing ground and the disadvantages of therapy outweigh the advantages.

How does your involvement benefit patients as well as their oncologists?

One thing I often have that an oncologist doesn’t have is time. By spending time with the patient and their family, I may learn things that are critical to decision making. I may pick up dysfunction in families that may be difficult for the average oncologist to know based on encounters during office visits for therapy. That often informs me, and subsequently the oncologist, about how to approach patients and families about difficult decisions.

The benefit for the patient is that I can learn about their psychosocial issues, the “rules” in the family, cultural issues, and who the decision maker in the family is. Even when the patient is alert and oriented and able to make his or her own decisions, we find that sometimes he or she is deferring to someone else. These situations can be ethically very complex because the other person in the family may be making decisions that the patient doesn’t necessarily want. One of our jobs is to inform the oncologist about what we see going on, and this then informs the whole team.

It isn’t unusual for us to say to an oncologist: “I think Mary is ready for hospice.” And she may at that point still be receiving active treatment. Our ability to provide this kind of philosophical or existential information allows the oncologist to make an informed decision, along with the patient, about shifting the direction of care.

What are “life reviews,” and why do you conduct them?

A life review is a conversation in which the patient reminisces about his or her important life experiences. This kind of intervention allows individuals to remember successes and failures, speak about issues of profound grief, and perhaps confess to behavior they regret.

It also offers the patient an opportunity to describe his or her legacy. We can ask about things that were important to them, things that hurt them, and discuss their relationships with their children, significant others or spouses, and their philosophy of life. You may ask questions like: “What were the things that meant the most to you? What would you consider your legacy? What would you want people to remember after you’re gone?” If you don’t have a lot of time you might start with that last question.

The life review gives us some insight into the patient—who they are, what their philosophy is, and what they might do in a given circumstance. That kind of information is very valuable and, to a large degree, informs the decisions that patients will make at the end of their lives. The [research] literature will tell you that it’s [also] a wonderful way for the patient to prepare to die.

This is not something that the average medical practitioner would have time to do, or is expected to do. I don’t often use the word “sacred,” but [a life review] is a sacred time when I can really have a chance to spend extraordinary time with the patient.

What are some other ways that you gain insights into your patients’ concerns?

Anybody in our hospital can make a referral to the pain and palliative care staff if they see somebody in pain, and that includes the pastoral care staff. Sometimes a patient says [to pastoral staff], “I don’t want to do this anymore. I’ve had enough.” We have asked pastoral staff to tell us and document when this happens, because that informs the rest of us. If you don’t tell anybody, we can’t help.

Another comment that I might hear from patients is, “Would you please help me die?” It’s a very frightening question to ask, because the individual runs the risk of being judged. Rarely do you hear patients ask the doctor for this kind of assistance.

When I hear that, I immediately try to find out why the patient feels that way and, if possible, remedy what can be remedied—for example, unmanaged symptoms. But then I can also inform the oncologist, and he or she can be part of the decisions that we make about further care. If the patient is still receiving active therapy, this is a red flag.

How many nurses have the time to spend talking with patients and their families as you do?

Time is a luxury in today’s health care system. One of the strengths that a palliative care service brings to a hospital is that we have more time. We are trained and expected to handle existential issues…which are more time-consuming and more frightening for patients and their families.

The bottom line is that palliative care services markedly improve the patient and family experience at the end of life.

Interviewed by Elia Ben-Ari

Profiles in Cancer Research

Bertie Ford: Mentoring Oncology Nurses and Helping the Underserved

Senior clinical oncology specialist
Genentech BioOncology

Bertie Ford
Bertie Ford

Bertie Ford knows what a difference a good mentor can make in a new nurse’s career. Even before deciding to become a nurse, while working at the Ohio Cancer Information Service, she was inspired by a lecture on cancer screening and prevention by visiting oncology nurse Elaine Glass. “I decided, ‘I want to do what she does,’” recalled Ford, who is now a senior clinical oncology specialist with Genentech BioOncology.

After Ford received her master’s degree in nursing from Ohio State University (OSU), Glass hired and supervised her at the OSU medical center cancer unit. During that time, Glass recommended Ford as a speaker for a meeting of a local American Cancer Society (ACS) chapter. That “was a great learning experience for me,” she recalled, and it served as an introduction to Ford’s subsequent success as a speaker, program planner, and leader in ACS and Oncology Nursing Society (ONS) local chapters. Her boss also motivated Ford to participate in nursing grand rounds for a program about phase I clinical trials.

When Ford decided to pursue a career as a research nurse several years later, however, “I did not have good [mentoring relationships] with my colleagues and managers,” she said. “I had to figure out what my role was going to be,” she explained, especially when she transitioned from being a staff nurse who was focused on primary care to a clinical trial nurse, which requires complex organizational and record-keeping skills.

Ford has since spent her career mentoring a host of oncology nurses. Her long-time leadership role in the Columbus chapter of ONS has been key to her mentoring activities. Among other things, she encourages involvement in research and in efforts to reach out to medically underserved populations.

In a recent interview with ONS Connect magazine, she said: “Pro­fes­sional involve­ment feeds your soul. I came up with a Rookie of the Year Award to reward young nurses who became involved in my chap­ter and made a differ­ence early on. Our first Rookie of the Year is now president-elect of our chapter!”

One nurse who has greatly benefited from Ford’s support and advice is Torri Curtis, who works in the hematology-oncology unit at the OSU Comp–Arthur G. James Cancer Hospital and Solove Research Institute (the James). Curtis met Ford shortly after graduating from nursing school, when they worked together in the oncology nursing unit at OSU medical center. “I had also become involved with the Columbus [ONS] chapter, so I would see [Bertie] at the chapter meetings and on the oncology floor,” she said.

In both places, Ford “was a great mentor to me,” Curtis said. She encouraged Curtis to run for the position of chapter historian. In addition, when the James Cancer Hospital opened in 1990, Curtis moved to the facility, where Ford was a nursing administrator for clinical research. “There are a lot of clinical trials that go on at the James, and it was growing rapidly at that time,” she said.

Ford urged Curtis to pursue a clinical research position at the James. “I was working more with phase I studies,” she said. “Bertie helped guide me on what I needed to do to organize those studies, as well as all the reviews and documentation needed for clinical trials.” And Ford encouraged Curtis to attend clinical trial research conferences.

Ford, who is African American, also saw the need early on to foster education for health care providers, including nurses, to engage in community outreach for better cancer control and treatment of underserved minority populations. In 1993, when she was president of the Columbus ONS chapter, Ford set up a Community Outreach Committee “to educate and partner and do things with the community,” she said.

With a series of small education grants over the next few years, the committee established a number of programs targeted at health care providers and underserved groups, including cultural competency workshops, health fairs, and the annual Breast Health Fashion Show, which is now in its sixth year. These efforts were also recognized at the ONS 2012 Congress, where the Columbus chapter’s committee, which now has 20 members, received the Pearl Moore “Making a Difference” Team Achievement Award.

Ford believes that mentoring nurses and other providers to be more culturally competent is key to increasing the enrollment of medically underserved populations in clinical research studies.

“The problem is that a lot of researchers and health providers are defensive about that,” she noted. “They say ‘we treat everybody the same and that’s a good thing.’” But, by better understanding another culture, “you can help increase those patients’ comfort with you, and they are more willing to listen to what you’re saying when you talk about participating in research,” she noted.

“Mistrust of medical institutions is a big obstacle” to attracting minority patients, Ford added. “You have to always be partnering with their communities in order to overcome that fear.”

Ford’s legacy as a mentor and contributor to the field of oncology nursing led ONS to recognize her with the ONS National Mentorship Award at its 37th Annual Congress last May.

Ford doesn’t intend to stop now: “My men­tor­ing has become more global in terms of both my think­ing and action,” she said. “The scope has changed from just a local ONS chap­ter to regional to national levels, encour­ag­ing greater involve­ment by oncology nurses in their field. We all can truly make a difference.”

Bill Robinson

Special Issue: Oncology Nursing

Observation as Good as Surgery for Some Men with Prostate Cancer

Two surgeons performing an operation
Results from the PIVOT trial suggest that some men with early-stage prostate cancer could opt to forgo radical prostatectomy.

Many men diagnosed with early-stage prostate cancer could forego radical prostatectomy and live as long as men who have immediate surgery, according to long-awaited results from a clinical trial published last week in the New England Journal of Medicine (NEJM).

The results of the trial, called PIVOT, were initially presented last year at the American Urological Association annual meeting. But many researchers and clinicians have been anxious to see the published paper so they can delve into the trial’s details and better gauge how the results will affect clinical practice.

The trial took place from 1994 to 2002, when screening for prostate cancer with the prostate-specific antigen (PSA) test was becoming widespread. The 731 men in the trial, whose median age was 67, were diagnosed with localized prostate cancer based on PSA test results and a biopsy. They were then randomly assigned to undergo either a radical prostatectomy or observation, sometimes called “watchful waiting.”

Overall, after follow-up for as long as 15 years (median of 10 years), the percentage of men who died from any cause was similar in both groups: 47 percent in men assigned to surgery versus 49.9 percent in men who underwent observation, a difference that was not statistically significant. The absolute difference in the risk of dying from prostate cancer was very similar, 5.8 percent versus 8.4 percent, and was also not statistically significant.

The data suggested, however, that men in the surgery group whose PSA level was above 10 ng/mL had a lower risk of dying from any cause including prostate cancer, Dr. Timothy Wilt of the Veterans Affairs Center for Chronic Disease Outcomes Research in Minneapolis, MN, and his colleagues reported. A similar, but not statistically significant, trend was seen among men whose cancer was considered to be at intermediate or high risk of progressing.

“Our findings add to evidence supporting observation, and possibly active surveillance, for most men who receive a diagnosis of localized prostate cancer, especially those with a low PSA value or low-risk disease,” they wrote.

The trial is “not necessarily definitive,” said Dr. Barry Kramer, director of NCI’s Division of Cancer Prevention. But the results, he continued, “are important findings that men can incorporate into the decision-making process” as they consider their options.

Dr. Kramer cautioned against extrapolating too much from the subset analyses that suggested a benefit from surgery for men with a PSA score above 10 ng/mL or high-risk disease. When the overall results of a study are not statistically significant, subgroup analyses “can give you variable and conflicting results,” he said. “You have to be careful in interpreting those findings.”

In an accompanying editorial in NEJM, Drs. Ian Thompson of the University of Texas Health Science Center and Catherine Tangen of the Fred Hutchinson Cancer Research Center argued that the trial’s size likely affected its results. PIVOT was originally designed to enroll 2,000 patients, but, due to difficulties in recruiting patients, the design was altered. In the end, Drs. Thompson and Tangen wrote, there were too few patients to provide the necessary statistical power to show whether surgery could reduce mortality.

The finding that men with low-risk cancer who underwent surgery had no reduction in the risk of dying is consistent with other studies of active surveillance, the editorialists continued, and “strongly supports this approach” for those men. “On the other hand, high-grade, aggressive prostate cancers usually have a lethal course if left untreated,” wrote Drs. Thompson and Tangen. “It is these men who are at greatest risk for death from cancer and who are most likely to benefit from therapy but whom we must treat effectively.”           

Although PIVOT compared surgery with watchful waiting, active surveillance appears to be a more commonly used approach than watchful waiting. A number of cancer centers have established active surveillance programs, said Dr. Ethan Basch of Memorial Sloan-Kettering Cancer Center in New York. Dr. Basch chaired a panel assembled by the American Society of Clinical Oncology (ASCO) that issued recommendations on PSA screening for prostate cancer 2 days before the publication of the PIVOT results. (See the box below.)

“When you put all of the available data together, you can begin to piece together a vision of a screening strategy” for prostate cancer, Dr. Basch said. Younger men who opt for PSA screening and are diagnosed with intermediate- or high-grade cancer would discuss potential treatments, while men diagnosed with low-grade disease would go into a surveillance program, he continued.

“That could potentially lead to a very different risk-benefit ratio for many men,” said Dr. Basch, one with a greater likelihood of benefit and a smaller risk of harms. He cautioned, however, that such a strategy needs to be tested prospectively in clinical trials.

—Carmen Phillips

This research was supported in part by the National Institutes of Health.

Further reading: “Active Surveillance May Be Preferred Option in Some Men with Prostate Cancer

Also in the Journals: ASCO Releases Clinical Opinion on PSA Screening

An expert committee convened by the American Society of Clinical Oncology (ASCO) has advised against PSA screening for prostate cancer in men with a life expectancy of less than 10 years and recommended that physicians discuss the potential benefits and risks of PSA testing with men who have a life expectancy of 10 years or more. The recommendations appeared in a provisional clinical opinion published July 16 in the Journal of Clinical Oncology.

The provisional clinical opinion was based largely on a literature review by the Agency for Healthcare Research and Quality, as were the recent recommendations on PSA screening from the U.S. Preventive Services Task Force (USPSTF), which recommended against routine screening. Like the USPSTF, the ASCO committee reviewed the most recent findings from two large randomized clinical trials: the Prostate, Lung, Colorectal, and Ovarian Cancer Screening Trial and the European Randomized Study for Prostate Cancer.

“We concluded that younger men with a longer life expectancy can have meaningful benefits [from PSA screening], but there is a trade off with the risk of harms,” Dr. Basch said. “Balancing these is subject to the values and preferences of an individual man, so we recommend that the decision [about screening] be aided by trustworthy and clear information explaining the evidence.”

ASCO also released a decision aid, written in plain language, for physicians to use with patients to help guide discussions about PSA screening.

Special Issue: Oncology Nursing

Selected Resources Related to Oncology Nursing

NCI Resources

  • Cancer Information Service
    NCI's Cancer information Service (CIS) provides up-to-date and accurate cancer information to patients, their families, the public, and health professionals. The CIS provides personalized responses to specific questions about cancer. Access the CIS by calling 1-800-4-CANCER, by e-mail, or by using the LiveHelp instant-messaging service.
  • Clinical Trials
    NCI's clinical trials portal features information on finding cancer clinical trials that are open for enrollment, the results of recent clinical trials, and who pays for the costs of care in clinical trials.
  • Physician Data Query (PDQ)
    PDQ provides up-to-date information summaries on most types of cancer and their treatment, supportive and palliative care, screening, and other topics for patients and health care professionals.
  • CCR Clinical Trials
    This NCI Center for Cancer Research (CCR) website features a list of cancer clinical trials being conducted at NIH, as well as general information about clinical trials and information for health care providers on referring patients to a clinical trial at NIH.
  • Education in Palliative and End-of-Life Care for Oncology (EPEC-O)
    This multimedia publication includes self-study modules and materials for trainers developed for clinicians caring for people with cancer.

National Institute of Nursing Research (NINR)
This NIH institute funds nursing research and research training. NINR's website contains information on research, funding, and training, with sections featuring research on end-of-life care and symptom management.

NIH Bioethics Resources on the Web
This website provides links to a wide range of bioethics information, teaching materials, conferences and events, journals in the field, academic centers and institutes in bioethics, and bioethics initiatives at NIH institutes and centers and other government agencies.

Oncology Nursing Society(ONS)
ONS is a professional organization of over 35,000 registered nurses and other health care providers dedicated to excellence in patient care, education, research, and administration in oncology nursing.

Cancer Research Highlights

Mapping the Molecular Changes in Colorectal Cancer

A molecular analysis of colon and rectal tumors has yielded insights that could lead to more targeted treatments for patients with this disease, according to a report by investigators from The Cancer Genome Atlas (TCGA) Research Network. Their findings are publicly available (here and here) and summarized in Nature this month.

TCGA investigators have previously reported on the molecular changes underlying ovarian cancer and glioblastoma, an often deadly brain cancer. In the new analysis, the researchers comprehensively characterized the genomes of 224 colon or rectal tumors, as well as matched normal DNA from the donors.

After excluding from their analysis tumors that had abnormally high rates of genetic mutation (hypermutated tumors), the researchers found no significant genomic differences between colon and rectal tumors, based on a variety of measures, including the number of copies of genes and the gene expression profiles of the tumors.

But an analysis of the molecular pathways in colorectal tumors showed that pathways could be disrupted in a number of ways. Some tumors had potentially cancer-related changes in multiple pathways, suggesting to the researchers that targeting a single pathway would not be sufficient to treat these tumors.

Most of the approved treatments for colorectal cancer are chemotherapies that produce poor response rates, noted Dr. Raju Kucherlapati of Harvard Medical School, who co-led the study. The new findings could form the basis for developing and testing therapies that target the molecular changes driving the disease, he added.

“There are a number of genetic changes present [in the tumors we examined], and drugs that target many of these changes are already in development,” Dr. Kucherlapati continued. For selected patients, new targeted drugs “have the potential to be highly effective.”  

He and his colleagues in the TCGA Research Network also found that 16 percent of the tumors were hypermutated. This phenomenon may be caused by defects in a cell’s ability to repair damaged DNA. Hypermutated tumors may also be aggressive.

Three-quarters of the specimens had a genetic change called microsatellite instability, which is associated with a better prognosis.

The researchers also found that the gene IGF2, which plays a role in cell proliferation, was altered in some tumors. Drugs that target the product of this gene or its receptor are in development and could be tested in patients whose tumors have alterations in IGF2.

The data from this study “provide an unprecedented resource for understanding this deadly disease and identifying possibilities for treating it in a targeted way,” the authors concluded.

This research was supported by grants from the National Institutes of Health (U24CA143799, U24CA143835, U24CA143840, U24CA143843, U24CA143845, U24CA143848, U24CA143858, U24CA143866, U24CA143867, U24CA143882, U24CA143883, U24CA144025, U54HG003067, U54HG003079, and U54HG003273).

Drug May Make Bone Marrow Transplants to Treat Blood Cancers Safer

Results from a small clinical trial suggest that a drug used to treat HIV infection may help prevent a potentially lethal complication of bone marrow transplants to treat patients with blood cancers. The drug, maraviroc, appears to work by altering the activity of immune system cells that are chiefly responsible for graft-versus-host disease (GVHD). The findings were published July 12 in the New England Journal of Medicine.

Allogeneic stem cell transplantation is often required to treat patients with leukemia and lymphoma. GVHD occurs when immune cells in the transplanted cell population attack the patient’s body, typically organs such as the liver, skin, and gut.

Dr. Ran Reshef of the University of Pennsylvania Abramson Cancer Center and his colleagues conducted a 38-patient clinical trial to test whether a 33-day course of maraviroc might limit or prevent GVHD. The drug targets a receptor on certain immune cells that helps direct them as they move throughout the body.

Overall, 35 patients could be evaluated, all of whom underwent reduced-intensity conditioning stem cell transplants. In this procedure, lower doses of drugs are used to kill cancer cells and suppress immune cells in the patients’ bone marrow before they receive stem cells. The 35 patients also received maraviroc and two other drugs commonly used to prevent or limit GVHD.

Six months after the transplants, about 6 percent of patients had experienced serious GVHD (grade III and IV)—more than 70 percent lower than what is usually seen after reduced-intensity-conditioning transplants, the authors reported. The treatment was most effective at preventing GVHD in the liver and gut, which can produce debilitating and even fatal outcomes.

In the first 100 days after the transplants, no patient had GVHD in the liver or gut; 6 months after the transplants, the rates were approximately 3 percent and 9 percent, respectively, which Dr. Reshef noted “is still very low.”

The rates of cancer relapse and death were nearly identical to what is typically seen with reduced-intensity conditioning transplants, a finding that Dr. Reshef said supports the hypothesis that maraviroc does not significantly suppress the immune system. “Disease relapse is a major concern of any trial of GVHD prevention,” he explained. “You may reduce GVHD, but you can pay the price of increased relapse. We were encouraged that we did not see this in our trial.”

More studies are needed to better understand the drug’s impact, Dr. Reshef stressed. The Abramson team is planning another small trial to test a longer course of maraviroc treatment, and they have begun discussions with the NCI-supported Blood and Marrow Transplant Clinical Trials Network to conduct a larger, multicenter trial.

This research was supported in part by the National Institutes of Health (P30-CA16520, K24-CA117879, and U01-HL069286).

Tumors May Resist Cancer Drugs with Help from Neighboring Cells

Researchers have identified a protein secreted by nontumor cells that may help nearby tumors evade the effects of anticancer drugs. The results, published online in Nature on July 4, add to a body of evidence that interactions between cancer cells and surrounding cells in the tumor microenvironment may influence the growth of tumors and their responses to treatments.

Patients with cancer rarely have complete responses to targeted drugs, and this suggests that there are mechanisms that can render a substantial proportion of tumor cells innately resistant to therapies. Although genetic mutations that allow tumors to acquire resistance over time have been identified, less is known about sources of innate resistance.  

To identify nontumor sources of innate resistance, Dr. Todd Golub of the Broad Institute and his colleagues grew cancer cells along with cells from the body’s connective tissue, or stroma, in the lab. When they exposed these mixtures of stromal cells and cancer cells to targeted anticancer drugs, the cancer cells were resistant to 15 of the 23 agents evaluated.

An analysis of more than 500 factors secreted by noncancer cells indicated that a protein called hepatocyte growth factor (HGF) may make melanomas with BRAF gene mutations resistant to treatment with vemurafenib, a recently approved drug that targets BRAF-mutated melanoma cells.

When the authors tested 34 samples from patients with melanoma, they found a correlation between HGF levels and the amount of tumor shrinkage following vemurafenib treatment. They also found evidence of resistance mediated by the microenvironment in other cancers.

Several drugs that inhibit HGF or MET, the receptor on tumor cells for HGF, are in development or have been approved for other indications, the authors noted. Combination clinical trials in BRAF-mutant melanoma, colorectal cancer, and possibly other tumor types could be considered, they added.

“It is increasingly recognized that both the tumor and its microenvironment will need to be therapeutically targeted for maximum efficacy,” commented Dr. Dinah Singer, director of NCI's Division of Cancer Biology. “This study provides an explicit example of a therapeutic strategy to address this.”

Understanding the role of the tumor microenvironment in the initiation, progression, and spread of cancer, Dr. Singer added, is a goal of the Tumor Microenvironment Network, an initiative sponsored by NCI.

This research was supported in part by the National Institutes of Health (P50-CA093683 and U54-CA112962).

Also in the Journals: No Overall Survival Benefit from Bevacizumab in Breast Cancer, Meta-Analysis Shows

A meta-analysis has shown that adding bevacizumab (Avastin) to chemotherapy may prolong progression-free survival in women with metastatic breast cancer, but the drug has no significant effect on overall survival or quality of life. The findings were published July 11 in the Cochrane Database of Systematic Reviews.

Researchers analyzed data from seven randomized trials involving more than 4,000 women with metastatic breast cancer. In the trials, treatment-related deaths were lower in women receiving bevacizumab, even though the drug increases the risk of serious adverse events that can lead to death.

“Because of the lack of effect on overall survival and quality of life,” the researchers concluded, “it is…controversial whether bevacizumab is associated with a true patient benefit [despite] the increase in progression-free survival.”

Read more: “Advisory Panel Upholds Recommendation to Withdraw Bevacizumab Approval for Breast Cancer

FDA Update

FDA Approves Test to Identify Colorectal Cancer Patients Who May Respond to Cetuximab

The Food and Drug Administration (FDA) has approved a genetic test to help physicians determine which patients with metastatic colorectal cancer are likely to benefit from the drug cetuximab (Erbitux).

The therascreen KRAS RGQ PCR Kit can detect seven mutations in the KRAS gene in DNA extracted from a patient’s tumor.

Activation of the epidermal growth factor receptor (EGFR), which is often overexpressed on the surface of colorectal cancer cells, promotes cell proliferation. The monoclonal antibody cetuximab binds to EGFR and blocks the receptor’s growth-promoting signaling pathway. Cancer cells that have a mutant KRAS gene, however, can continue to grow even in the presence of cetuximab.

FDA approval of the test was based on a retrospective analysis of biopsy samples from patients participating in the phase III CO.17 clinical trial that supported the original approval of cetuximab. Patients whose tumors lack KRAS mutations (also known as KRAS wild-type tumors) had an overall survival of 8.6 months with the addition of cetuximab compared with 5.0 months with best supportive care alone. For patients whose tumors had KRAS mutations, adding cetuximab did not significantly affect survival.

The FDA has also approved cetuximab in combination with the FOLFIRI regimen as a first-line treatment for patients with KRAS wild-type, EGFR-positive metastatic colorectal cancer. The approval for this new indication was supported by a retrospective analysis of the phase III CRYSTAL trial, which showed a 4-month increase in median survival for patients without KRAS mutations who received cetuximab plus FOLFIRI versus FOLFIRI alone.

Further reading: “Colorectal Cancer Trials Support Gene Testing for Two Drugs

Public Workshop Focuses on New Guidelines for Pediatric Imaging Devices

On July 16, the Food and Drug Administration (FDA) held a public workshop to gather comments on a draft guidance that encourages manufacturers to consider the safety of children in the design of new x-ray imaging devices. The draft guidance addresses the development, marketing, and use of imaging devices, including design features, labeling information, and testing in children.

Children are more sensitive than adults to radiation, including the low levels of radiation delivered by imaging machines such as computed tomography (CT) scanners and fluoroscopy devices, which use x-rays to see inside the body. A recent study showed that radiation exposure from CT scans in childhood results in very small but increased risks of leukemia and brain tumors in the first decade after exposure.

The FDA developed the new draft guidance as part of its Initiative to Reduce Unnecessary Radiation Exposure from Medical Imaging. The agency launched the initiative in 2010 in response to rising concern about the contribution of medical radiation to exposures in the general population and after several reports of patients receiving accidental radiation overdoses during routine imaging.

The new draft guidance includes recommendations from a March 2010 public meeting on how to improve safety for pediatric patients undergoing medical imaging. Participants at that meeting recommended the development of tailored pediatric protocols and control settings by device manufacturers, better instructions and educational materials for device operators, an overall emphasis on reducing pediatric doses, and better tools for quality assurance and for the collection and storage of information on individual patients’ doses.

Participants at the workshop included members of the Alliance for Radiation Safety in Pediatric Imaging, professional organizations such as the American Association of Physicists in Medicine, industry representatives of the Medical Imaging and Technology Alliance, and members of the general public.

The participants discussed a number of issues, including

  • the need to use patient size rather than age to guide the development of pediatric imaging protocols;
  • the need for better training, since the majority of pediatric imaging scans are not performed in dedicated children’s facilities;
  • questions about whether simulation alone is sufficient to test new devices and protocols, or whether clinical data from children are needed;
  • the need for better communication between manufacturers and the medical staff who use the machines; and
  • concerns about whether restrictive product labeling would lead to the off-label use of machines with no safety or efficacy data available for children.

The FDA will accept comments on the draft guidance until September 7. Instructions on how to submit comments by mail or through regulations.gov can be found on the FDA’s draft guidance webpage. The draft guidance docket number is FDA-2012-D-0384.

An archived webcast of the public workshop is available, and full transcripts of all sessions will be made available, on the workshop webpage.

Notes

University of Kansas Earns NCI Cancer Center Designation

The University of Kansas (KU) Cancer Center has been selected for designation as an NCI cancer center. The designation is given to centers that exhibit scientific excellence and the capability to integrate diverse approaches to cancer research.

Richard and Annette Bloch Cancer Care Pavillion at The University of Kansas Clinical Research Center
Richard and Annette Bloch Cancer Care Pavillion at The University of Kansas

The center offers a full range of cancer services, from prevention and diagnosis to treatment and survivorship, for inpatients and outpatients. Through a partnership with Kansas City Cancer Center, patients have access to more than 10 locations with many specialists, technologies, treatment options, and clinical trials.

Clinicians and basic research investigators collaborate through disease-specific working groups to define clinical research priorities, with an emphasis on investigator-initiated trials. These groups focus on lung, gastrointestinal, genitorurinary, head and neck, breast, and brain cancers, as well as hematology/bone marrow transplantation. The center is also part of a network that offers cancer education resources to doctors, researchers, and cancer support professionals.

The National Cancer Advisory Board recommended The University of Kansas Cancer Center for the designation in June. Patients will have access to clinical trials that are available only to NCI-designated cancer centers, and the center will be able to apply for federal research grants only available to NCI-designated cancer centers.

“The National Cancer Institute has recognized our scientific excellence, and the designation validates what we already knew—that research conducted at the University of Kansas Cancer Center is already helping to eliminate the burden of cancer,” said Dr. Roy A. Jensen, director of the KU Cancer Center in a press release. “We are extremely proud of what this designation means.”

“Achieving this designation has been the university’s top research priority because of the benefits it will provide to patients and our region,” said KU Chancellor Bernadette Gray-Little.

NIH Seminar Will Address Palliative Care for Cancer Patients

Amy Berman, a registered nurse and senior program officer with the John A. Hartford Foundation, will present the next NIH Medicine: Mind the Gap Seminar, “Cancer Care: The Patient’s Role, Palliative Care, and Implications for Health Policy.” The seminar will take place August 3 from 10:00 a.m. to 12 noon E.T. at the Natcher Conference Center, Rooms E1/E2, on the NIH main campus in Bethesda, MD. A live and archived webcast of the seminar will be available online.

Berman will talk about the patient’s role in establishing the goals of care, the importance of palliation, and recommendations for health care policy. Participants will learn how a patient, in partnership with the health care team, can play a vital role in achieving better health, better care, and lower medical expenses.

Berman heads the Hartford Foundation’s Integrating and Improving Services grants, focusing on the development and dissemination of innovative, cost-effective models of care that improve health outcomes for older adults. She is also responsible for a number of efforts to improve transitions of care, home health care delivery, and redesign primary care to better meet the needs of those with multiple chronic diseases.

More information about the Medicine: Mind the Gap Seminar Series is available online.

NCI Dictionary of Cancer Terms Available for Your Website

Organizations outside NCI can now feature the NCI Dictionary of Cancer Terms by adding a widget that allows users to look up terms directly from their websites. The dictionary contains more than 7,200 cancer and medicine-related terms. Written in easy-to-understand language, the definitions include links to pronunciation and biomedical images on NCI’s website.

Once the NCI Dictionary widget has been added to a site, it is automatically updated whenever NCI updates the application. To add the widget to a website, follow these instructions. A Spanish widget is also available for the Spanish version of the dictionary.

With nearly 340,000 page views per month, the NCI Dictionary of Cancer Terms is one of the most widely used resources on NCI’s website.