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A D V A N C I N G T H E P O W E R O F M E D I C I N E ®

Imagine a day when every bone marrowtransplant patient has a match.

A new day of hope for cancer patients is here. Even if you’re related, a perfect match is difficult to find. Bone marrow transplant patients typically wait months for a lifesaving match. Now, specialists at The University of Kansas Cancer Center have new ways to match almost any patient immediately, including the opportunity to match with a parent, sibling or adult child. And a match could mean a cure. In this region, it’s only happening here.

For an appointment, a second opinion or to speak to a nurse, call 913-588-1227. Or learn more at kucancercenter.org.

© The University of Kansas Hospital

On the Cover:

Illustration by Sarah Walsh

Executive Editor

CJ Janovy

Editor

Donna Peck

Art Direction and Design

Design Ranch

Contributing Writers

Toni CardarellaAndy HylandLaura LongDavid MartinDonna Peck

Contributing Photographers

Tatjana AlvegardForester Michael

Illustration

Paul Wearing Sarah WalshDesign Ranch

The University of Kansas Administration

Bernadette Gray-Little, Ph.D., Chancellor

Doug Girod, M.D., Executive Vice Chancellor, KU Medical Center; Executive Dean, KU School of Medicine

Karen Miller, RN, Ph.D., FAAN, Senior Vice Chancellor, Academic and Student Affairs, KU Medical Center; Dean and Professor, University of Kansas School of Nursing; Dean, University of Kansas School of Allied Health

Kansas Medicine + Science is published by the Office of Public Affairs at the University of Kansas Medical Center, 3901 Rainbow Blvd., Kansas City, Kansas 66160, 913-588-5956, www.kumc.edu. This publication is available in alternate formats upon request by calling 913-588-7963 (TDD). To view Kansas Medicine + Science online, go to www.kumc.edu/public affairs.

All changes of address, undeliverable copies and other correspondence should be sent to this address. The views presented in this pub-lication do not necessarily reflect the opinions of the administration of the University or the Kansas Medicine + Science staff. Kansas Medicine + Science does not endorse and is not respon-sible for any of the services or merchandise advertised. Potential advertisers can contact the Office of Public Affairs at 913-588-5956. The entire issue is copyrighted, and no part may be reproduced without prior permission. Patient photos are used with permission.

DOUG GIROD, M.D. Executive Vice Chancellor, KU Medical Center

MESSAGE FROM the EXECUTIVE VICE CHANCELLOR

Educating a 21st-century health care workforce for Kansas, the country and the world has always been our primary mission at the University of Kansas Medical Center. It is a particular point of pride that the KU School of Medicine has been one of the top medical schools in the country when it comes to training primary care and family doctors. As a matter of fact, the American Academy of Family Physicians conducts an annual census of the medical school graduates who enter family medicine residency programs accredited by the Accreditation Council of Graduate Medical Education. In its most recent census, the KU School of Medicine ranked No. 2 on the list, with 20.8 percent of its graduates going into family medicine residencies. That’s pretty impressive when you consider that nationwide, only 7.8 percent of graduates of M.D. programs are entering family medicine.

At the KU School of Medicine, we are doing everything we can to help alleviate the shortage of physicians entering primary care. In 2011, the school opened a new campus in Salina and expanded the M.D. program at the Wichita campus to a full four years. The expansions increased the number of first-year KU medical students from 175 to 211.

In this issue of Kansas Medicine + Science, there is a fascinating illustration that shows the long and challenging path a medical student takes on the way to becoming a primary care physician.

Also in this issue, there is a poignant story about Kathy Davis’ work with critically and chronically ill children and their families. You can also learn more about the increasing number of nurse navigators who are helping patients through the often overwhelming health care maze. We also take a look at a research breakthrough using transplanted pancreatic islet cells to help fend off diabetes in dogs…and humans.

We hope you enjoy this issue of Kansas Medicine + Science, and as always, we appreciate any feed-back from our readers. Just drop us an email at kmands@kumc.edu. We look forward to hearing from you.

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INSIDE THIS ISSUE

ARTICLES

Forming a New IsletBoth animals and humans with diabetes may benefit from new research into pancreatic islet cells

The Patient’s GuideNurse navigators are guiding more patients through the health care system

Coping with HopeThe KU Kids Healing Place provides support for the families of children with chronic and life-threatening illnesses

How to Make a Primary Care PhysicianThe road to becoming a primary care physician can be a long and arduous one

The Kansas Stroke TeamPatients in rural areas of Kansas are getting advanced stroke treatments because of an initiative to bring better care across the state

DEPARTMENTS

PulseNews from KU Medical Center

10 QuestionsThe director of The University of Kansas Cancer Center talks about going for comprehensive National Cancer Institute designation

Alumni Spotlight

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02 KANSAS MEDICINE + SCIENCE

A question that has long perplexed scientists is why, of two individu-als who are the same age and in the same environment, does only one develop a health problem such as cardiovascular disease or meta-static cancer? Danny Welch, Ph.D., chair of the University of Kansas Medical Center’s Department of Cancer Biology, and his colleagues at the University of Alabama-Birmingham (UAB), may have discovered part of the answer to that question.

According to research by Welch and his UAB colleague Scott Ballinger, Ph.D., mitochondrial DNA might play a role in whether certain peo-ple are more susceptible to diseases than others. With just 37 genes, the mitochondrial genome seems small compared with the nuclear genome’s 30,000 genes, but Welch believes that those 37 genes may be a key factor in the predisposition toward some diseases.

Welch used a technique called mitochondrial-nuclear exchange (MNX), which allows researchers to determine whether a given trait tracks with the nucleus or the mitochondria. Welch and his fellow researchers were able to manipulate the mitochondria genomes in mice and observe disease traits that the offspring then inherited. Welch says what they have learned is that there’s a language of communica-tion involving the mitochondria that hasn’t been fully appreciated.

Welch thinks scientists will now begin to look more closely at what role mitochondria may have in the predisposition toward certain diseases. In the meantime, Welch and Ballinger have been tinkering with other MNX mice in additional experiments. The research was published in the August 2013 issue of Biochemical Journal.

THE KU CANCER CENTER JOINS THE BRAIN TUMOR TRIALS COLLABORATIVE

A CELL’S MITOCHONDRIA MAY BE A FACTOR IN SOME MAJOR DISEASES

The University of Kansas Cancer Center is now a member of the Brain Tumor Trials Collaborative (BTTC), a 10-year-old national organization based in Houston, Tex. BTTC is comprised of clini-cians from multiple institutions who work together to devise clinical trials investigating new drugs, or new combinations of existing drugs, against brain tumors.

Sarah Taylor, M.D., the KU Cancer Center’s sole neuro-oncologist and a professor of medicine at KU Medical Center, was the driving force behind this new membership.

Scientific and clinical breakthroughs against brain cancer may seem glacial, especially to patients and their families, but progress is being made. The average survival rate for patients with glioblastoma, for example, has gone from just six weeks post-surgery to 14 months. Techniques such as stereotactic radiosurgery — pinpointing the exact location of brain tumor cells, then aiming a precise dose of radiation at them — greatly reduce side effects for patients. Chemotherapy, once considered useless, is now standard. Two FDA-approved chemotherapy drugs, temozolomide and bevacizumab, have emerged in the last decade.

Collaboratives such as BTTC apply the critical-thinking skills of mul-tiple experts toward tackling a challenging problem. Taylor says the need for collaboration is more pronounced with rarer cancers because individual centers can’t see enough patients to complete clinical trials on their own. Also the more heads put together means better scrutiny of observations, quicker answers and wider acceptance of the data.

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Alzheimer’s disease researchers at KU Medical Center have received $3 million from the National Institutes of Health (NIH) to study the role of exercise in preventing the disease. It will be one of the first such studies in the country. Researchers hope to enroll healthy adults 65 and older in a new effort called the Alzheimer’s Prevention Program. Participants determined to be at higher risk for Alzheimer’s disease will exercise by walking on a treadmill regularly over the course of a year. After completing the study, brain scans will show whether the participants are at higher or lower risk. Jeffrey Burns, M.D., professor of neurology and associate director of the Alzheimer’s Disease Center, hopes that the new program will determine how much exercise is beneficial for the brain and what types are best.

A new study by KU Medical Center researchers suggests that one mechanism for controlling the ravages of polycystic kidney disease (PKD) might be found in vitamin B3. Xiaogang Li, Ph.D., an associate professor of nephrology and hypertension and a member of the KU Kidney Institute, found that vitamin B3 helped naturally inhibit the activity of a protein called Sirt1 which influences the formation and growth of cysts. Li and colleagues were able to show that vitamin B3 slowed the creation of cysts and restored kidney function in mice with PKD. Polycystic kidney disease is one of the most common life-threatening genetic diseases, affecting 600,000 Americans and 12.5 million people worldwide. With a research program dating back to the 1950s, KU Medical Center scientists are internationally recognized experts on the disease. The results were published in the June 17 issue of the Journal of Clinical Investigation.

ALZHEIMER’S DISEASE RESEARCHERS AWARDED GRANT TO STUDY BENEFITS OF EXERCISE

VITAMIN B3 MAY HOLD PROMISE FOR TREATING POLYCYSTIC KIDNEY DISEASE

The KU School of Nursing has been designated a Center of Excellence in Nursing Education by the Washington, D.C.-based National League for Nursing. KU is the only nursing school in the region and one of just 26 nursing schools in the country to earn the designation since the organization began awarding it nine years ago. The School of Nursing was granted designation for demonstrating sustained, evidence-based and substantive innovation in the category of “Creating Environments That Enhance Student Learning and Professional Development.” The designation, which extends through 2017, also acknowledges the school’s ongoing research to document the effectiveness of its innovations, for setting high standards and for showing commitment to quality improvement.

A KU Medical Center professor whose research focuses on the benefits of exercise after stroke walked across the state of Kansas in May to draw attention to stroke research. Sandra Billinger, Ph.D., PT, assistant professor in the Department of Physical Therapy and Rehabilitation Science, and her 20-year-old son, Michael Thomas, covered 570 miles from the Colorado state line just west of Coolidge, Kan., to the Missouri state line at the KU Medical Center campus in Kansas City, Kan. The funds raised in support of the walk were used to purchase new equipment that will help Billinger and her team better measure brain blood flow so that they can see how exercise can help people recover from stroke. Billinger was inspired to pursue a career in physical therapy after going through a lengthy recovery from a severe car accident in 1993. Thomas, too, plans to pursue a career in physical therapy and sports medicine.

KU SCHOOL OF NURSING EARNS CENTER OF EXCELLENCE DESIGNATION

KU PROFESSOR WALKS ACROSS KANSAS TO PROMOTE STROKE RESEARCH

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As soon as The University of Kansas Cancer Center earned National Cancer Institute (NCI) designation in July 2012, director Roy Jensen, M.D., set the next goal: even higher designation as a comprehensive cancer center. Jensen’s hope is that by September 2016, when the KU Cancer Center applies for renewal of the grant that earned its original NCI designation, the application will be for comprehensive status (see page 18).

The difference between the two types of designation is essentially the size, breadth and depth of the cancer center’s research and educational expertise.

For its initial designation, the cancer center had to show “scientific leadership, resources, and capabilities” in at least one area: laboratory, clinical or population science (or a combination of those three). It also had to show “reasonable depth and breadth of research” and “transdisciplinary research” in its main area of expertise.

To earn comprehensive designation, however, the cancer center must have depth and breadth of research in all three of those areas. Moreover, the cancer center must show that it is educating health care and research professionals and reaching out to communities, “including the dissemination of clinical and public health advances in the communities it serves.”

Working in its favor are KU Medical Center’s strong public health researchers, many of whom are members of the cancer center’s Cancer Control and Population Health program. This work got a boost in April, when Won Choi, Ph.D., and his colleagues were awarded a $2.7 million, five-year NCI grant to create an Internet-based program to help American Indian tribal college students stop smoking. Choi’s latest project builds on a long history of successful research efforts in Native Americans communities. In 2010, the medical center was awarded a $7.5 million National Institutes of Health grant to launch the Center for American Indian Community Health, led by Christine Daley, Ph.D., to address the health disparities common among American Indians.

KU researchers in the Center for American Indian Community Health enjoy a strong relationship with the tribes in Kansas as well as at Haskell Indian Nations University, whose students represent more than 250 tribes throughout the country. Collaborations with Haskell led to All Nations Breath of Life, a culturally tailored program designed to help American Indians stop smoking while respecting their traditions involving tobacco. Choi says the goal was to develop a program for adult to middle-aged and older American Indian smokers, not just from Kansas but throughout the country.

With the new NCI funding, Choi says researchers will begin developing a culturally tailored smoking-cessation program specifically for tribal college students and their online environments. The first year of the program deals with fine-tuning the intervention — including conducting focus groups, developing qualitative studies and integrating ideas recommended by the potential participants.

KU PUBLIC HEALTH RESEARCHERS ARE WORK-ING TO STOP CANCER IN ENTIRE POPULATIONS

Carl Weiner, M.D., chair of the KU School of Medicine’s Department of Gynecology and Obstetrics, says the use of medication during pregnancy is a neglected area of research. Only a few drugs are tested on pregnant women. In fact, in 1977, the Food and Drug Administration excluded all women of childbearing age from early phases of clinical trials. The decision was overruled in 1993. Still, most information about how medications affect pregnancy — and how pregnancy affects a drug — is derived from animal tests, epidemiological studies, and registries of women who take medication and volunteer to provide information during and after their pregnancies.

Weiner is the co-author of a textbook, Drugs for Pregnant and Lactating Women, about to enter its fourth edition. Now he has written a book aimed at a much wider audience. The book, The Complete Guide to Medications During Pregnancy and Breastfeeding, was published in April 2013. Weiner says women can use the book as a starting point to question whether a particular drug is safe for them.

KU OBSTETRICIAN WRITES MEDICATION GUIDE FOR WOMEN WHO ARE PREGNANT OR BREASTFEEDING

STUDY USES IPADS TO CONNECT PATIENTS AND FAMILIES WITH HEALTH CARE TEAMS

Patients who suffer from severe digestive disorders can receive life-sustaining nutrition directly into their bloodstream at home, with an intravenous blood infusion therapy called home parenteral nutrition (HPN). However, the treatment can have complications, including bloodstream infections. About one-third of the patients who get infections die.

A new telemedicine study led by KU School of Nursing researcher Carol Smith, RN, Ph.D., FAAN, is investigating how iPad technology can be used to reduce intravenous bloodstream infections and help improve the lives of these patients as well as the family members who care for them at home.

With an iPad in each study household, patients who receive HPN will have more real-time access to health care and expertise. The project, funded through a $1.3 million grant from the NIH, will use mobile technology to engage and empower patients and their families by connecting them to Web-based health care clinics, peer support and a range of Internet nursing educational and counseling resources.

The mobile technology will mean that patients and family members participating in the study can easily access website information about signs and symptoms of deteriorating conditions, and about managing procedures and equipment at home. Through the iPads, patients will have access to Internet-based step-by-step home-caregiving procedures and videos illustrating home-care IV procedures. The project will also examine how mobile technology can assist with quality-of-life issues associated with HPN patients and their families, such as depression, fatigue and financial distress.

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ILLUSTRATION: Paul Wearing

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B Y D O N N A P E C K

KU MEDICAL CENTER’S RESEARCH INTO INSULIN- PRODUCING CELLS COULD LEAD TO BETTER TREATMENTS

FOR DIABETES FOR DOGS — AND HUMANS

It was about two years ago that Kevin Alexander knew something wasn’t right with his dog, Rueben, a 10-year-old schnauzer-poodle mix. Rueben had started drinking alarming amounts of water and had to urinate constantly. After a few visits to the vet, Alexander got the news that Rueben had diabetes.

Alexander now gives his dog insulin shots twice a day and has to be vigilant about Rueben’s health. Earlier this year, for example, Rueben scraped his tail on a shrub during a walk. A massive infection developed, and he had to have his tail surgically removed. Rueben is also losing his eyesight.

Although Alexander doesn’t complain about Rueben’s diabetes-related health problems and the lengths he must go to keep his dog healthy, he admits it has had an enormous impact on his life. But research now being done by scientists at KU Medical Center could change the prognosis for diabetic animals like Rueben – and for some humans with the disease as well.

TRANSPLANTS AS A CURE

Rueben is one of an estimated 400,000 dogs and cats in the United States with diabetes. In both animals and humans, diabetes is caused when the islet cells of the endocrine pancreas can no longer produce enough insulin or stop producing it altogether. The condition is commonly divided into two types, depending on its origin. Type 1 diabetes is caused by destruction of the beta cells in the pancreas. Type 2 diabetes, the most common type in humans, occurs when the pancreas doesn’t produce enough insulin, or the cells ignore the insulin; this form of the disease is most often caused by obesity and lack of physical activity. There is no Type 2 diabetes in dogs. For the 25.8 million children and adults in the United States who have diabetes, the condition can lead to heart and blood-vessel diseases, nerve damage, kidney damage and a loss of sight. Canine diabetes has fewer complications, the primary one being diabetic cataracts.

Lisa Stehno-Bittel, Ph.D., chair of the Department of Physical Therapy and Rehabilitation Science at KU Medical Center, has devoted much of her career to finding a cure for diabetes. In her laboratory, Stehno-Bittel has spent years exploring the restoration of normal glycemic conditions through pancreatic islet transplantation.

Islets are the clusters of endocrine cells scattered throughout the tissue of the pancreas. Within each islet are several types of cells working together to regulate blood sugar. The islet’s beta cells sense sugar in the blood and release the necessary amount of insulin to maintain normal blood-sugar levels.

First performed successfully on humans in 2000, pancreatic islet cell transplantation involves harvesting the fragile insulin-producing islet cells from a deceased donor’s pancreas and transfusing them into the liver of the recipient. Stehno-Bittel says the idea of transplanting

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Lisa Stehno-Bittel and Karthik Ramachandran

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DOGS LEAD THE WAY

It is a bit ironic that Likarda is getting ready to do a clinical trial on Kanslets for canine diabetes that might someday have applications for humans – when it was dogs that were used as clinical trial subjects when scientists were in the process of developing the islet transplantation procedure for people.

“The islet transplantation clinical trials years ago showed that the treatment was very effective in dogs and was then successfully tested on humans,” she says. “But because academic medicine researchers and veterinary researchers seldom interact, islet transplants for dogs were never developed.”

Stehno-Bittel says a key advantage is that Kansas City sits in the heart of the Animal Health Corridor, which stretches from Columbia, Mo, to Manhattan, Kan., and has the world’s largest concentration of animal health industries.

pancreatic islet cells into a patient with diabetes is currently science’s best option for curing the disease in both animals and humans. But she says there have been challenges with the procedure.

“First of all, there aren’t many donors,” Stehno-Bittel says. “Then after transplantation, the patient must use immunosuppressive drugs for the remainder of their lives, which can put them at risk for infections and certain cancers.”

Stehno-Bittel says another huge complication is that more than half the islet cells die upon infusion, and the cells left alive after the procedure tend to die off over time.

“The transplanted cells are not reconnected to the circulatory system in the body the way they are in a person whose islet cells function normally. Islet cells require a lot of blood flow to get the insulin they produce into the system when needed, and the lack of blood flow reduces the effectiveness of the cells.”

That’s where the islet transplant research of Stehno-Bittel and her colleague, Karthik Ramachandran, Ph.D., comes in. In 2012, Stehno-Bittel and Ramachandran founded Likarda LLC, a start-up company housed at the Bioscience and Technology Business Center at KU Medical Center. Likarda’s technology centers around the ability to miniaturize tissues and organs – and its first major research study involves producing miniaturized islets for transplantation in dogs.

“We discovered that the smaller the tissue is that you are implanting, the better it will perform,” Stehno-Bittel says.

Ramachandran came up with a process to miniaturize tissues in the lab. In the case of islet cells, Ramachandran would take a pancreas and put it through an enzymatic process that broke down the tissue. Then the islet cells could be extracted. But Ramachandran has taken one step further by pulling the islet cells apart, and placing them on a patented micro-mold surface Likarda developed so they can reform individual islets, which are responsible for releasing insulin. Likarda has dubbed the miniaturized islets “Kanslets.”

When Likarda first tested the Kanslets on rats with diabetes, the results were astounding.

“Within 24 hours, the rats were cured of their diabetes,” Ramachandran says. “It was quite thrilling to observe.”

One big advantage that the Kanslets have over islets in transplantation is that the Kanslets grow in a way that allows them to survive without a blood supply. Ramachandran says Likarda is also working on a method of surrounding the Kanslets with a hydrogel to prevent the donor cells from being rejected by the recipient while still allowing them to release insulin.

Likarda is currently conducting safety studies on Kanslets in dogs and will begin a Phase 1 clinical trial in mid-2014 on the effectiveness of Kanslet transplantation on diabetic dogs. The clinical trial will be conducted at the University of Missouri‘s College of Veterinary Medicine in Columbia.

While Stehno-Bittel and Ramachandran are enthusiastic about a possible cure for diabetes in dogs, what they’re most excited about is the potential of Likarda’s miniaturized organs technology.

“There are so many possible applications for this technology,” Ramachandran says. “We create miniaturized cancer tumors in our labs and test potential cancer drugs on them to see if they are effective on the tumors – and before they are taken through animal studies to a clinical trial phase.”

Ramachandran says he can see the day when Likarda could produce miniaturized stem cell clusters – or grow bone and cartilage cell clusters that could be used to treat arthritic knees and hips instead of more invasive artificial knee and hip replacement procedures.

Stehno-Bittel says the work being done at Likarda could be game-changing. “It’s really hard to wrap your head around where this technology could take us.”

Contact Donna Peck at dpeck@kumc.edu

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B Y L A U R A L O N G

When Liz Bessette, RN, was asked to help guide patients through their care after St. Francis Hospital in Topeka opened its cancer center in 2003, she had no idea she was making Kansas history. Bessette, a nurse at St. Francis since 1968, had spent many years in critical care administration and was involved in staff education when the CEO of St. Francis asked her to help steer cancer center patients through the overwhelming maze of treatment and logistics they would encounter. Bessette thus became the first nurse navigator in Kansas.

Nurse navigators help patients make informed medical decisions and assist with setting up multiple doctors’ appointments and tests. Navigators also provide tips on coping with patients’ prognoses; make sure patients stay on track with their treatment; run interference on insurance issues; and offer emotional support. All this is at no additional charge to patients.

Bessette’s years of nursing experience helped her quickly assume her new responsibilities. “It

didn’t take long to see how navigation could help patients achieve better outcomes.”

Cancer care navigators first came to the general public’s attention in 1990 when Dr. Harold Freeman, who was then president of the American Cancer Society, developed the Harlem Cancer Education and Demonstration Project to help low-income families in New York City get access to the health care they needed to prevent, detect and treat cancer. A disproportionate number of poor people in New York were dying from cancer, and Freeman’s research indicated a need for caring professionals to help uninsured and under-insured get the care and follow-up they needed to survive. Freeman believed that no one with cancer should spend more time fighting their way through the system than fighting the disease.

Bessette recalls that early on in her days as a navigator, she worked with a patient diagnosed with lymphoma who was also addicted to illegal drugs. “This was someone who struggled

Nurse navigators in Kansas are helping patients make their way through today’s labyrinthine health care system

From top: Heather Wright-Renick, Liz Bessette, and Carol Bush

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“Lynn was instrumental in guiding us through my husband’s treatment plan,” says Polly Pearce, Stephen’s wife. “She helped us with everything from his second opinion appointment to recommendations on hotels and maps and directions at KU Cancer Center. Lynn has also been available for questions now that my husband is back home and getting his follow-up care in Salina.”

The University of Kansas Cancer Center has jumped on the nurse navigator bandwagon in a big way. “We’ve gone from one navigator to nearly a dozen in less than three years,” says Teri Banman, RN, BSN, who heads up the navigator program at the KU Cancer Center. “I wouldn’t be surprised to see our team expand further, as the cancer center treats increasing numbers of patients.”

Nurse navigation programs have advanced so far that some nurses are going into navigation specialties. For example, the KU Cancer Center

has a nurse navigator whose primary focus is palliative care. The navigator helps patients who are dying or who have long-term illnesses address quality-of-life issues, discusses best avenues for a treatment track and helps with advance care planning and end of life care.

Several studies have shown that navigation services increase participation in cancer screenings and commitment to follow-up care. Data from a five-year study sponsored by the National Cancer Institute and involving thousands of patients is currently being analyzed to determine the benefits of patient navigation to groups, including racial and ethnic minorities, who often don’t get early screenings and face multiple barriers to timely and effective care.

In the meantime, patient satisfaction provides some of the strongest evidence of how valuable navigators have become in Kansas. Steven Pearce’s wife, Polly, explains it best.

“Dealing with cancer is never easy. But having someone on your side certainly makes it more bearable.”

Contact Laura Long, llong2@kumc.edu

to get through a normal day, much less having to stay on track with medications, insurance and appointments. But thanks to navigational assistance, he completed treatment.”

By 2006 Bessette was sharing her knowledge about navigation with the Kansas Department of Health and Environment and developing nurse navigation tools for the Kansas Cancer Partnership. Interest in the concept began picking up steam across the state as word of improved outcomes spread in the health care community.

Less than two years after Bessette began providing navigation in Topeka, Dorothy Austin, RN, OCN, was hired as a nurse navigator by Douglas Girod, M.D., then the chair of otolaryngology at The University of Kansas Hospital.

Girod, who is now executive vice chancellor at KU Medical Center, says he knew this was an area where nurses would excel.

“Oncology nurses in particular understand how challenging the journey can be,” Girod says. “I think navigators have filled a critical gap as the liaisons between doctors, patients and their families.”

Austin recalls that, although she was serving as a navigator, she was called a clinic nurse coordinator at first because the term “navigator” was not widely known. “Regardless of what we called it,” says Austin, “it was clear that the navigational assistance was decreasing wait times and increasing patient satisfaction.”

Results like these helped ensure passage of the Patient Navigator Outreach and Chronic Disease Prevention Act, signed by President George W. Bush in 2005 to help fund implementation of patient navigation programs in cancer treatment centers. Successful outcomes also spurred the National Cancer Institute to establish patient navigator research programs in nine centers across the country that same year.

By the time the Midwest Cancer Alliance (MCA) was formed at KU Medical Center in 2008 to help extend research and trials into rural Kansas, health professionals in the region had a clear idea of how critical the navigation role was in improving treatment and outcomes.

“One of the first positions we filled was for a nurse navigator because we knew how crucial it would be in helping to improve access to the latest care and treatment across the state,” says Hope Krebill, the executive director of the MCA.

Carol Bush, RN, had experience as an infusion nurse and had been a complex cancer and transplant case manager when she was hired by the MCA as a nurse navigator through an endowment provided by the Kansas Masonic Foundation. Bush spent some time shadowing Bessette as she learned about her new role.

Five years in navigation have taught Bush that success as a navigator requires broad clinical experience, exceptional communication skills, and the ability to collaborate and broker relationships. With guidance from Bessette and other navigators she has met across the country, Bush has helped build a network of navigators in rural Kansas, including Heather Wright-Renick, BSN, at St. Catherine Hospital in Garden City.

A nurse for 15 years, Wright-Renick is a recent graduate from the KU School of Nursing and a breast cancer survivor – which helps her bring a unique perspective to the care she provides.

“I don’t mind sharing my own cancer experience with patients,” Wright-Renick says. “In fact, it helps some patients feel a connection to me.”

Lynn Marshall, RN, the patient navigator at Salina Regional Health Center’s Tammy Walker Cancer Center, points out that navigators have to connect not only with patients but also serve as bridges to services and resources. As a navigator, she was able to help set up a second-opinion consultation for Stephen Pearce of Wells, Kan., a melanoma patient who needed a treatment that was not available in Salina. Pearce was able to see Gary Doolittle, M.D., at The University of Kansas Cancer Center for a second opinion and be admitted for treatment in a matter of days – a process that could have taken weeks without navigation and interactive televideo services.

“I DON’T MIND SHARING MY OWN CANCER EXPERIENCE WITH PATIENTS.”

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One warm summer day in 2010, Darrena Bagley, then 10 years old, was practicing double dutch jump rope with her mother and sister when she fell to the ground. She was taken to the emergency room, where an MRI revealed that this was no ankle sprain. The scan indicated that Darrena had osteosarcoma, a malignant bone tumor that usually develops during the period of rapid growth that occurs in adolescence.

After receiving chemotherapy to shrink the tumor in her leg, Darrena underwent surgery at The University of Kansas Hospital. It was not possible to remove the tumor and save the affected limb.

A girl who loved jumping rope, volleyball, dancing and roller-skating before the diagnosis would now have to learn to use a prosthetic. Amputation was not her only obstacle. The cancer had spread to Darrena’s lungs and her thigh bone in the same leg, requiring additional surgeries. Last year, in order to save Darrena’s remaining leg, Kimberly Templeton, M.D., a professor of orthopedic surgery and director of musculoskeletal oncology at KU Medical Center, removed Darrena’s entire thigh bone, replacing her hip, knee and thigh bone with metal and plastic replacements. This type of surgery is usually performed in adults and is extremely challenging in young people who have small bones. A lengthy and intense period of rehabilitation followed.

And, of course, the chemotherapy caused her hair to fall out. “You know, a woman’s hair is her glory,” says Norma Harris, Darrena’s grandmother.

Darrena has proved her mettle. Today, she is a 14-year-old freshman at a high school in Kansas City, Kan. Not fully confident in her ability to walk on her prosthetic leg without falling, she uses a crutch or a cane. But in September, she took part in homecoming activities. She dreams of becoming a doctor.

Darrena’s mother, Chanté Harris, and grandmother say they are grateful for the care Darrena has received at KU Medical Center. In particular, they describe one member of the team as a “remarkable woman” and someone they were “truly blessed to have known.”

That person is a former schoolteacher who has worked with Darrena’s family since the osteosarcoma was discovered. Kathy Davis, Ph.D., is the director of KU Kids Healing Place, a program for children diagnosed with life-limiting or chronic conditions.

While doctors and nurses administer treatments, Davis works with children and families to meet their nonmedical needs. The work can take many forms. On any given day, Davis is a mediator, tutor, educator,

THE KU KIDS HEALING PLACE PROVIDES CARE AND SUPPORT FOR CHILDREN AND TEENS WITH CHRONIC OR LIFE-LIMITING DIAGNOSES

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ILLUSTRATION: Sarah Walsh

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spiritual advisor and fixer. The go-to person for the psychosocial needs of chronically ill and dying children, she does everything from searching for strollers that can accommodate a 10-year-old boy with chronic kidney disease to helping couples plan for the delivery of a baby who will not survive outside the womb.

For example, part of her advocacy for Darrena meant working to make her school life as normal as possible. When Darrena was in middle school, Davis spoke to a student assembly about the challenges their classmate faced. She also talked to the coach of the cheerleading team. Darrena was fitted for a uniform and named captain of the squad.

“I don’t think Darrena could have made this transition without her,” her grandmother says.

“Kathy is a consummate advocate for children, especially those in need of help,” says John Carney, the president and chief executive of the Center for Practical Bioethics, a not-for-profit organization in Kansas City, Mo.

‘A LITTLE WAR ZONE’

Davis’ first job out of college was as a teacher at R.J. Delano School for the Physically Impaired in the Kansas City, Mo., school district. Her students had IQs ranging from 29 to 141 but were lumped together because of their physical limitations. “At first, we really didn’t see the strengths of kids who had physical disabilities,” Davis says. “We just saw the disability.”

In 1983, she joined the Kansas City, Kan., Public Schools. Her classroom was in The University of Kansas Hospital, which is located in the district. Her students were patients in the hospital’s pediatric units.

A week before Davis arrived, the classroom had served as a neurosurgery intensive care unit. She recalls tracing her fingers along the punch labels that marked which cupboards held brain lavage and lumbar puncture kits.

The room had a desk, a vinyl-covered dental chair and five Little Golden Books. Davis quickly went through the $300 she had been given to pay for supplies for students who were in preschool, studying high school calculus and every point in between. She hit garage sales on the weekends and begged other school districts for their hand-me-down textbooks. “I learned pretty quickly how to ask for things,” she says.

From her previous job, Davis had experience working with children who had spina bifida, cerebral palsy and other serious medical conditions. In the hospital, she met children who had been abused, survived automobile accidents and were being treated for cancer. In time, she learned where to hold the emesis basin for a child who was nauseous from chemotherapy. “I kind of felt initially like I was coming into a little war zone,” she says. “I had no preparation or understanding of what I was diving into.”

The doctors and nurses were a big help. But most of what Davis learned about life-altering and life-limiting illnesses came from the children and their families.

At one time, she had a group of eight girls, ranging in age from 12 to 20. One spoke about the sadness of missing her high school prom. Another worried about her family’s financial situation. To Davis, it was clear that the girls needed to stop being patients, if only for a little while. The next day, she ordered pizza, brought in bottles of nail polish donated by a friend who sold cosmetics, and put a romantic comedy in the video player. The party lasted five hours.

Kathy Davis and 16-year-old Alyssa Farrell, who is being treated for Ewing’s sarcoma

15WINTER 2014

Pizza night and other experiences showed Davis the importance of helping the children move forward and do the things kids love to do: Go to school, play, hang out with friends, visit grandparents. “Part of my job was to teach them how to read and how to do math, those very real school things,” she says. “The other part of my job was to help them figure out how to continue living with a quality of life that was meaningful for them despite this big cloud of serious illness or injury.”

While she was teaching, Davis began a doctoral program in chronic illness and palliative care at the University of Kansas. This was just as health professionals were beginning to think more about child death. Too many children in the United States, Davis says, were dying with inadequate attention to their pain control and quality of life. “Instead, we’re just kind of plopping them in the hospital or sending them home without support, and that just wasn’t good enough,” Davis says.

As a schoolteacher, Davis had already been providing what would be considered palliative care. Parents of dying children would ask her to help manage the grief of siblings and grandparents. She performed eulogies for children from families who did not have regular places of worship. “I kept getting pulled into the psychological, social, emotional and spiritual needs of kids and families,” she says.

Davis and Chet Johnson, M.D., the chair of the KU Department of Pediatrics, began talking about starting a pediatric palliative care program at KU Medical Center. Johnson says Davis’ work as a teacher had allowed her to see how illness and disease affected children and their families. “She already had the compassion and the caring,” he says. “I think she developed a natural passion for what it meant when children got sick.”

The timing was right. By 2008, both the hospital and the school district had stopped funding her classroom. Davis, having completed her doctorate, joined the Department of Pediatrics as an assistant professor.

Davis’ faculty position allows her to teach students, residents and fellows about educational and psychosocial needs of children with chronic and life-threatening illnesses. In 2013, she was selected to receive the Chancellor’s Distinguished Teaching Award, which recognizes outstanding classroom teaching at the University of Kansas. “You can’t hear as much as a whisper when she is at the head of a classroom,” says Martha Barnard, Ph.D., a professor of pediatrics in the KU School of Medicine.

As for her work in the pediatric unit, Davis is not technically a clinician, which means her efforts are not reimbursed through insurance and other sources. Instead, KU Kids Healing Place relies on the Department of Pediatrics and on philanthropy for financial support. But Johnson, for one, has no doubts about the contributions Davis makes.

“She probably puts in more hours caring for children than the average physician would,” he says. But there has never been any question in my mind about her value to the pediatrics department.”

CARING FOR THE WHOLE CHILD

KU Kids Healing Place is not the oldest pediatric palliative care program, nor is it the largest. But it is one of the first to provide holistic care at the

time of diagnosis. Before caring for the whole child became the norm, most pediatric palliative care programs focused just on the end of life.

By getting involved early in treatment, Davis has built relationships with some families that have lasted years.

Jayon Blakey was diagnosed with sickle cell anemia shortly after birth. Davis met him when he was about a year old. He is now 15.

Jayon’s mother, Gina, says Davis has advocated for her son at the schools he has attended, helped his younger brothers understand his condition and worked with a child’s wish-granting organization to arrange a family trip to Disney World. “There’s never been a time when we needed her where she didn’t respond with a phone call or piece of information we needed,” she says.

Blakey has also relied on Davis at times when Jayon has seemed overwhelmed by the challenges of navigating adolescence with his disease. “He’s comfortable talking to her about things that he may not be

comfortable talking to me about,” Blakey says. “There have been times when I didn’t know what I was going to do with him, but she was able to get through to him.”

Some children Davis works with have complex diseases. Quenten Hayes, age 10, has chronic kidney disease and experiences seizures and hypertension. Once a month, he goes to The University of Kansas Hospital for intravenous immunoglobulin transfusions that last all night. Earlier this year, he was admitted for hospital stays lasting 30 and 67 days. “We’re frequent fliers,” says his mother, Heather Hayes.

Hayes says she relies on Davis for moral and emotional support. “In my mind, she’s like family.”

During hospital stays, Quenten has contact with several different subspecialists, and this can be dizzying for a parent. Hayes says Davis helps her manage what can feel like a barrage of information. “If I was struggling, I could have her paged, and she would be there in 10 minutes.”

Quenten does not attend school because of the risk of infection. In situations like his, Davis works with the families to identify the individual

16 KANSAS MEDICINE + SCIENCE

education programs the school can provide. If the child is able to attend school, Davis often visits the building in advance to smooth the student’s transition. This can entail a description of the burns, amputation or weight loss that the returning student may exhibit. She also uses televideo to communicate with school nurses and counselors.

For Davis, two early experiences — one negative, one positive — stressed the importance of getting the school piece right.

When KU Kids Healing Place was in its first year, she worked with a 7-year-old girl who had lost a leg, a hip and half of her pelvis to cancer. The girl left the hospital on a Thursday before she was set to return for chemotherapy on Monday. “Never in my wildest dreams did I think that she would go to school on Friday,” Davis says.

The girl’s father carried her into the school building. No one knew she was coming. Her desk had been moved into a hallway and was covered with Mother’s Day plants the children were growing. Unprepared for the sight of a classmate who had undergone a hemipelvectomy, one student ran out of the classroom screaming. Another vomited.

“It was a horrible experience for this kid,” Davis recalls. “She never wanted to go back again.” The child did not return to school before her death.

At about the same time, a little planning enabled a 6-year-old with leukemia to make two successful visits to her school before she died. During one visit, the child sat in a beanbag chair while the teacher read stories. The girl left school with pictures that her classmates had drawn for her. The artwork was posted in her hospital room.

The time that the girl with leukemia spent in school was meaningful for her as well as her classmates. Davis heard later from a teacher who said students who had been in the class spoke positively of the experience years later.

“It was a horrible thing for little kids to be exposed to, but hiding them from it doesn’t mean they’re not aware,” Davis says. “They still figure out what’s going on.”

WHEN TREATMENT DOES NOT LEAD TO A CURE

Children who are sick or dying can face a great number of physical challenges, including fatigue, the side effects from medication, and the disease process itself. But through it all, they “stay in the thick of it,” Davis says. “They have to keep marching through that fire that is life.”

The same could be said of adults, of course. But children, Davis says, are at a disadvantage because they have not fully developed their identities. They do not know their strengths and weaknesses. They do not know how to operate within systems.

“They just muddle their way through it with parents who are often overwhelmed, overworked and trying to hold down a job while they’re caring for an extremely sick child,” she says. “They may be driving hours from home to the hospital. They may have other children for whom they are providing care. They have a marriage to tend to.”

Daegen Feyh marched brightly through his short life. Diagnosed with acute myeloid leukemia when he was 2½, he spent days and sometimes weeks hooked to an IV at The University of Kansas Hospital. When the tubes came out, he would run around the hospital floor, arms spread, shouting, “Free as a bird!”

“Daegen was like no other child,” says his mother, Janelle. “He lit up a room and kept you wanting more.”

Davis met Janelle and her husband, Lance, and their daughter, Alexa, now 17, shortly after Daegen was diagnosed. Janelle remembers Davis visiting the family in Daegen’s room and asking if they needed anything. Davis told them where they could take a shower or get a cup of coffee. She drew a picture of Daegen in his hospital bed.

“She was always there, checking to make sure that all of our needs were being taken care of,” Janelle says. “There are so many times when we needed her, and she was there.”

The Feyhs were particularly grateful for Davis’ counsel when Daegen’s condition progressed to the point that he was transferred to St. Jude’s Children’s Research Hospital in Memphis. The experimental treatment, Janelle says, was “our last hope.” He was 4½ when he died.

The Feyhs, who live in Topeka, have kept in contact with Davis and other parents they met during their experience with Daegen. Among other things, KU Kids Healing Place is a support group. Davis says parents now do much of the planning for the celebration-of-life service, held every spring for babies and children who have died. Parents also return to The University of Kansas Hospital to talk with nurses and residents who are being trained in pediatric palliative care.

For families about to make that journey, Janelle Feyh advises taking nothing for granted and making a list of the things they hope to accomplish should treatment fail to lead to a cure. Also, she says, “Remember that everything you are feeling is fine and perfectly normal. Take care of yourself as best you can so that you can be there for your child.”

Davis has learned that families may adapt to the loss of a child, “but they never get quote ‘over’ the loss.”

When it comes to self-care, Davis has used different coping strategies during her career. There was a time, she says, when she would go shopping whenever there was a death in the pediatric unit. Now she mostly relies on her spirituality and the support of family and friends. Though the hours can be long, she tries to leave her work behind when she goes home.

But if anything, the losses hit harder than they did in the past. Davis thinks it might be because she has a grandchild now.

“It never gets easier to watch the challenges encountered by a child with a serious illness and their family,” she says. “That is why it is so important to have programs like ours, to help families find as many resources as possible along their journey.”

Contact David Martin, dmartin3@kumc.edu

Jayon Blakey

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B Y D O N N A P E C K

19WINTER 2014

Has the euphoria of getting NCI designation worn off yet?

It was certainly an exciting day when we got to make that announcement to our community and state. But NCI can-cer centers have to reapply for NCI sta-tus every five years, so we had to get to work right away examining what we are currently doing and what we can do better to keep growing.

And in 2016, you will be applying for designation as a comprehensive cancer center. How is that different from your current NCI designation?

Our current designation was awarded because we demonstrated excellence in basic science and clinical research. Comprehensive designation focuses more on prevention, education and outreach. We need to show the NCI that we understand cancer from a com-munity standpoint, with an emphasis on population science — determining the incidence of all kinds of cancer in our region and the susceptibility of our population to various forms of cancer. Most importantly, we have to demon-strate that as a cancer center, we have taken the lead in decreasing the burden of cancer in our region.

How many NCI cancer centers are also comprehensive centers?

Right now, 41 of the 67 NCI centers have comprehensive status.

How challenging will it be for The University of Kansas Cancer Center to earn comprehensive status?

We are in great shape in several areas. We know that 30 percent of all cancer is linked to the abuse of tobacco, and we already have a number of very strong smoking-cessation programs in Kansas. Obesity is the second leading cause of cancer, and we have public health initiatives in place that emphasize the importance of healthy diet and exercise in cancer prevention. We also have a very strong partnership with Children’s Mercy Hospitals on reducing child-hood obesity. And the Midwest Cancer Alliance is doing great outreach all over Kansas right now.

Where do you need improvement?

We need to focus on epidemiology and population sciences, so we can delve deeper into the distribution and causes of cancer in our population. We need to fully understand the lifestyle, environ-mental and genetic factors that influ-ence cancer incidence and survival in Kansas and the region.

Will you need to do more recruiting?

Yes, we have a few key people we need to bring on board to have a chance at comprehensive status, including a fair number of clinicians. We have several people we are close to getting, but we still have some searching to do.

It took hundreds of millions of dollars in philanthropic donations to bring The University of Kansas Cancer Center up to NCI status. Is there a price tag for The University of Kansas Cancer Center earning comprehensive designation?

We will definitely need to raise more money to recruit more researchers and clinicians and to develop and expand our prevention, education and out-reach programs. We are in the process right now of determining what it may take from a fundraising standpoint to put us in good position to get compre-hensive status.

So you think there’s a good chance of getting comprehensive status in 2016?

I’m always an optimist. You have to be in this business.

Why go for comprehensive status in this cycle? Why not wait until 2020 or beyond?

If we rest on our laurels and do nothing, the incidence of cancer in our region will double by the year 2030. We don’t want to sit around and let that happen. We need to reverse that trend now.

It doesn’t sound like you’ve had much time to relax since the cancer center received its NCI designation.

Not much. But to me, this is fun. When I was young, my grandfather told me to find a job that you loved so much, you’d do it for free — and then find someone who will pay you to do it. I’m pretty for-tunate that I have that here at KU.

Contact Donna Peck at dpeck@kumc.edu

ROY JENSEN, M.D., director of The University of Kansas Cancer Center, does not appear to have rested since July 2012, when U.S. Health and Human Services Secretary Kathleen Sebelius announced that the cancer center had been awarded National Cancer Institute (NCI) designation. Jensen had left Vanderbilt University in 2004 and returned to his home state of Kansas to help KU develop an NCI-designated cancer center. The fact that he had been able to do it in a mere seven years surprised many observers. The accomplishment capped a decade-long effort backed by unprecedented community support, and for Jensen, it was just the beginning. As soon as Sebelius made the announcement, Jensen was already talking about achieving the next, highest NCI designation as a comprehensive cancer center. We sat down to talk to Jensen about the excitement of receiving NCI designation and what’s next for The University of Kansas Cancer Center.

Students are now officially M.D.s, but they can’t practice on their own until they complete their residencies.

COMMENCEMENT

HOW TO MAKE

A PRIMARYCARE PHYSICIAN

A 2013 study named the KU School of Medicine–Wichita as sixth in the nation for producing primary care physicians. That’s particularly significant at a time when Kansas and the rest of the nation face a critical physician shortage. The study was conducted by researchers at George Washington University and the Robert Graham Center for Policy Studies in Family Medicine and Primary Care. The KU School of Medicine as a whole is one of the country’s top schools for educating primary care physicians. In the class of 2013, for example, 75 of the 164 graduates at the Kansas City and Wichita campuses chose family medicine, internal medicine or pediatrics. And with the opening in 2011 of the Salina campus — dedicated to educating more primary care physicians for rural and underserved areas — the School of Medicine anticipates training even more primary care doctors for Kansas.

AS THIS GRAPHIC ILLUSTRATES, THE ROAD TO BECOMING A PRIMARY CARE PHYSICIAN IS A LONG AND ARDUOUS ONE.

STUDENT TAKES THE MCAT

Phase 1 of a student’s medical education consists of 13 modules organized around central themes or organ systems. Students spend up to 15 hours every week in class lectures, with the rest of their week spent using a variety of educational tools to reinforce lecture materials and develop clinical proficiency.

YEARS 1 & 2

EXAM 2In their fourth year, students take the United States Medical Licensing Examination Step 2 test to assess their ability to apply medical knowledge, skills, and understanding of clinical science essential for patient care.

Fourth-year medical students find out where they will be serving their residencies. A not-for-profit organization, the National Resident Matching Program, matches students with the

MATCH DAYinstitutions where they will receive their training. The matches are made by a computer algorithm that weighs the preferences of the students and the sponsoring institutions.

STUDENT IS ACCEPTED TO MED SCHOOL

20 KANSAS MEDICINE + SCIENCE

A residency is a period of graduate medical training. Residents practice medicine under the supervision of fully licensed physicians, usually in a hospital or

RESIDENCYclinic. To become a primary care physician, a resident must successfully complete a 3-5 year residency, depending on the area of primary care.

EXAM 1After their second year, students take the United States Medical Licensing Examination Step 1 test to measure how well they understand and can apply important concepts of the basic sciences to the practice of medicine.

After the residency period, if the residency director determines that a resident has mastered the six competencies (patient care, medical knowledge, interpersonal communications, professionalism, systems-

PRIMARY CARE PHYSICIAN

based practice and practice-based learning) required by the Accreditation Council for Graduate Medical Education (ACGME), the resident is now a primary care physician who can practice without supervision.

Obstetrics/Gynecology

Pediatrics

Family Medicine

Psychiatry

PHASE 2 MODULES

General Surgery

Internal Medicine

Geriatrics

Neurology

Use Problem-Based Learning to introduce an evidence-based approach to medicine.

Set a foundation for integrity and honesty in professional relationships.

PHASE 1 TOOLS: + GOALS

Provide a solid background in basic medical sciences.

Clinical Skill Labs and Exercises provide an introduction to patient care through clinical skill labs and small-group discussions.

21WINTER 2014

In Phase 2 of their training, students do rotations through hospital and community-based clinics. Students observe physicians; learn to work with a variety of health professionals; interact with patients; and develop essential

YEARS 3 & 4communication, examination and diagnostic skills. In the fourth year, students do a number of rotations, including a rotation with a rural physician. Time is also allotted for residency interviewing and extra electives.

22 KANSAS MEDICINE + SCIENCE

CAROL GROEN DOESN’T NEED TO BE REMINDED about the need for better stroke care in rural areas.

“I’ve been at the bedsides of too many patients who couldn’t move and couldn’t get their words out,” says Groen, a registered nurse at Hays Medical Center.

Now patients in rural areas of Kansas are receiving access to the most advanced stroke treatments because of a statewide initiative to bring better care across the state. The Kansas Initiative for Stroke Survival (KISS), directed by a stroke specialist at the University of Kansas Medical Center and supported and administered by the American Heart Association, helps rural hospitals stay current on the latest information and treatments for stroke.

For patients like the ones Groen sees, that can mean receiving drugs that weren’t given before the program started. One such drug, intravenously administered, can make a huge difference for patients if they arrive at the hospital quickly enough. Patients who had a bleak prognosis before can now fully recover.

“Many of our patients never would have been able to go back home if they didn’t get that drug,” says Groen, who helps administer the KISS program at Hays Medical Center. “They would’ve been in a nursing home.”

Colleen Lechtenberg, M.D., an assistant professor in the KU Medical Center’s Department of Neurology and the director of The University of Kansas Hospital’s Advanced Comprehensive Stroke Center, serves as the director of KISS. She is the chairwoman of a statewide Kansas State Stroke Task Force with 100 participating members from across the state. Lechtenberg brings her expertise and knowledge to smaller hospitals in Kansas and helps them understand how to use the latest treatments available.

Lechtenberg knows that while high-quality stroke care is available for patients in populated areas like Kansas City, people who live in more rural areas of the state often aren’t so fortunate, especially in a situation where time is extremely critical.

“With a stroke, time is brain,” Lechtenberg says. “We’re dealing with a situation where 2 million brain cells are dying every minute.”

The program is one of the first of its kind in the country, and the American Heart Association is looking to expand the model to other areas. Cherie Boxberger, who helped set up the KISS program with the American Heart Association, recently moved to a new position in Texas and is looking to start a similar effort in that state.

Kay Brown, the new program administrator for the American Heart Association, says it’s working so well, she hopes to expand it to Nebraska, which faces similar issues in treating strokes in rural areas. She says the model could also be expanded to fight the so-called “widowmaker” heart attacks, a condition that also is difficult to treat in rural areas.

According to data from the American Heart Association, stroke is the No. 4 killer of Kansans, and only 2 percent of Kansans with acute ischemic stroke (a stroke caused by a blood clot that blocks or plugs a blood vessel in the brain) receive tPA, an intravenous drug that is the only FDA-approved treatment for acute ischemic stroke.

One of the reasons tPA is administered to so few people is because it must be given quickly — within four and a half hours of a patient first showing symptoms of a stroke. Many patients, particularly in rural areas, don’t get to a hospital that quickly. Rural hospitals didn’t always administer the drug in the past, but having access to the expertise of doctors at larger academic medical centers is helping them feel more comfortable about administering tPA.

S T R O K E T E A M

T H E

B Y A N D Y H Y L A N D

23WINTER 2014

One of the KISS program goals is making hospitals “Emergent Stroke Ready” – meaning they are much more prepared to handle a stroke patient who comes into the emergency room. Emergent Stroke Ready hospitals have written protocols, a transport plan with one or more hospitals, and the capability to administer tPA to patients who qualify. They also collect data on stroke patients and share it monthly with the Stroke Task Force.

Before the program, Kansas had 12 hospitals that met the Emergent Stroke Ready criteria, all of them in Wichita, Topeka or the Kansas City area. Today, 58 hospitals in Kansas are Emergent Stroke Ready and can be found all across the state. And early results show that 7.2 percent of patients now receive intravenous tPA treatments in Kansas, six months after the program began.

As part of the KISS program, The University of Kansas Hospital partners with primary stroke centers at Stormont-Vail Regional Medical in Topeka; Saint Luke’s Hospital in Overland Park, Kan.; and Via Christi Health in Wichita to provide support to smaller hospitals, including having stroke doctors available to them on a telephone hotline 24 hours a day, seven days a week.

When doctors like Lechtenberg are available to take calls from health care providers at rural hospitals, it helps provide peace of mind and, at the end of the day, leads to better results for patients.

“There really are not any simple cases,” Groen says. “It’s helpful to us to be able to call the experts, and I know it’s helpful for the small communities around us.”

In Hays, after becoming Emergent Stroke Ready, the hospital is taking additional steps to become a certified stroke-care facility in the hopes of providing even better stroke care. Groen says the networking that came with being a part of the KISS network has helped with that process.

“I think it opened our eyes to a need,” she says. “Sometimes you don’t have to be a big facility with all the bells and whistles to take good care of patients.”

The KISS program also helps hospitals – especially smaller ones – make decisions about when it’s appropriate to transfer patients to hospitals that are better equipped to provide stroke care. This can be a challenge.

“We’re out in rural America, and there are great distances between facilities,” she says.

But Groen says all the advanced stroke care in the world can’t help if people don’t get to a health care facility when they show the first signs of a stroke.

In fact, according to the American Heart Association, more than half of all people in Kansas who die from stroke expire before reaching a hospital, clinic or medical center. So the group is also working on a campaign to get the word out about signs of stroke.

Knowing the symptoms of stroke — sudden difficulty speaking, a quick onset of numbness or weakness, sudden trouble seeing, trouble walking, dizziness, loss of balance, and a severe headache with no known cause – can help save lives, Lechtenberg says, especially given the very limited amount of time available to work with.

Here, too, the statistics can be daunting. According to the American Heart Association, only 22.8 percent of Kansans could identify all the signs

and symptoms of a stroke and knew the appropriate response to them: picking up the phone and immediately calling 911.

“We are so bad at recognizing these signs,” says Boxberger, the American Heart Association staffer who helped set up the program. “We think all of our stroke symptoms are solved by going to bed, and all our heart attack symptoms are solved by taking a Rolaids.”

Groen says she thinks the program is already helping spread the word about the dangers of stroke. Particularly in rural communities, people often hear from a neighbor or friend about what happened when someone in their town had a stroke and how it was treated. Groen hopes that kind of interaction can encourage others to take quick

action when they see the signs of stroke.

“The more that we are talking about stroke, the more it makes a difference,” she says.

In the coming year, the KISS program will be measuring how effective their campaign has been in disseminating information about signs and symptoms of stroke; how many stroke patients receive the tPA drug treatments; how many people are transferred to hospitals with better stroke-care options; and – most importantly – whether there has been an expected decline in the overall number of people who die from strokes in Kansas.

“Where you live shouldn’t determine whether you live,” Boxberger says.

Contact Andy Hyland, ahyland@kumc.edu

Stroke outreach coordinator Tony Nunn, Colleen Lechtenberg, and stroke program coordinator Janice Sandt

24 KANSAS MEDICINE + SCIENCE

About 16 years into a seemingly successful career in the drug development field, Jeff Knight decided to return to school and become a nurse. Knight, who has an MPH in biostatistics and epidemiology from the University of Oklahoma, had been working in clinical research for several pharmaceutical companies when he got “this feeling that something was missing.”

Knight decided he wanted a nursing education. So he went back to school to get a BSN degree at the University of Kansas School of Nursing. As a student, he worked for about nine months as a nursing associate in the Medical and Transplant ICU at The University of Kansas Hospital. He was hired as an RN in the same unit after graduating with honors in nursing in 2011. It was there he would make another career turnaround decision.

“Being at the bedside with many oncology patients and their families actually inspired me to go into research again,” Knight says. “I saw what a difference new cancer therapies could make, not only for an individual patient but for entire populations suffering from a disease. I could see the clear need to develop new and innovative treatments for cancer patients. So I returned to drug development, specifically oncology clinical research.”

Barb Geiger, a mentor to Knight in the late 1990s when he was starting out in the biopharmaceutical industry, understands how someone could

benefit from being an RN in this industry, especially if that someone is Knight.

“Jeff is one of those Renaissance-type folks,” says Geiger, who directs the Global Oncology Division for Clinipace Worldwide Inc., and is a graduate of the KU School of Nursing. “He is very much a leader at his company and is very involved in philanthropy. He’s in the pharmaceutical development side of things, yet he brings a real personal side. That’s where being a nurse comes in – they’re people-oriented, always putting the patient first.”

Knight landed at Onyx Pharmaceuticals in San Francisco, where he is now senior director of clinical operations, overseeing aspects of the company’s global oncology clinical development programs, including the management of more than 40 clinical operations professionals.

“My nursing education has given me such a different perspective,” he says. “It allows me to be a better advocate for patients as we design clinical trials. I also think it’s given me more clinical credibility with physicians and other health care providers.”

Contact Toni Cardarella, tcardarella@kumc.edu

JEFF KNIGHT SENIOR D IRECTOR, CL IN ICAL OPERAT IONS ONYX PHARMACEUT ICALS

Jeff Knight

INVEST IN FUTURE LEADERSConsider a gift for KU Medical Center

Scholarships make a KU Medical Center education affordable to promising students

who might not be here otherwise. Far Above: The Campaign for Kansas is enabling

KU to enroll and graduate the best and brightest students — our future health care

providers and leaders, researchers and clinical experts. These graduates will help us

build healthier communities and advance the frontiers of medical knowledge.

To discuss a gift benefiting students with the passion to care for others, please

contact Nell Lucas, 913-588-5551, nlucas@kuendowment.org, or Peggy Person,

913-588-5441, pperson@kuendowment.org.

Glenn Dunne, microbiology 2013

Natasha Kothari, psychology 2013

Chancellors Club scholars

“Receiving this prestigious scholarship gave us so many opportunities and definitely brought us closer together. Now we are engaged and are both attending KU Medical Center. We are truly grateful for everything the scholarship has given us.“

3901 Rainbow Blvd.Kansas City, KS 66160

– 2014 –

University of Kansas Medical Center

Alumni Reunion WeekendReconnect. Rediscover. Recharge.

Friday, October 10-Saturday, October 11, 2014

We welcome all alumni & friends back to campus for an unforgettable celebration.www.kumc.edu/alumni/reunion