Young, Complex, and Coping with Cancer

A new program strives to meet the life changes and special challenges of young cancer patients.

collage of young people's portraitsMia is in her last year of college carrying a full load of classes. When her thoughts aren’t consumed by applying for law school, she’s worrying about her dad who’s been laid off of his longtime job. She tries to keep her energy up by catching a Zumba class with a friend, but she’s been exhausted for most of the fall. She’s lost weight and chalks it up to stress, but she has to admit that something doesn’t seem right.

The doctor at student health furrows her brow and sends Mia to the ER for more tests. The results are quick and life altering: Mia has leukemia. She is admitted to the hospital and before her parents can arrive from Chicago, bone marrow tests are underway to figure out what kind of leukemia she has and next steps. In the midst of all this, a nurse talks to her about something called fertility preservation—freezing her eggs definitely had not been on her mind just a few days earlier.

Now Mia wonders if she’ll have to drop all of her classes and sublease her apartment. As the weeks go by, she finds herself in her childhood bedroom. Friends at college return her texts with emojis or silence. Except for grandparents, most of them have never known anyone with cancer and their discomfort is palpable.

Mia feels deeply alone—the only 20-year-old in the world who isn’t going to parties and thinking about school. Since most of her care takes place in an adult wing of the hospital surrounded by patients three times her age, she doesn’t realize that this is far from the truth. Every eight minutes, an adolescent or young adult in the United States is diagnosed with cancer.

Different Ages, Different Needs

Although Mia is fictional, her story represents what many young cancer patients go through. Hospitals are coming to understand that Mia and her cohort, identified as adolescents and young adults (AYA) who range from 15 to 39 years old, have different experiences and needs. They also have different survival rates.

While the survival rates for infants, children, and adults with cancer continue to improve, the rates for AYA cancer patients have remained stagnant. Starting with movements in the United Kingdom and Australia, hospitals are increasingly trying to provide whole-patient care that is focused on the particular needs of this group with the hope of giving them better odds.

In order to inform a new AYA cancer program that was initiated jointly by the University of Iowa Stead Family Children’s Hospital and the Holden Comprehensive Cancer Center, a series of focus groups was held with AYA patients. The result was a recently published article co-authored by Erin Mobley, a CPH doctoral student in health management and policy; Kristin Foster, a pediatric oncology nurse; and William W. Terry, a pediatric oncologist.

The paper, “Identifying and Understanding the Gaps in Care Experienced by Adolescent and Young Adult Cancer Patients at the University of Iowa Hospitals and Clinics,” was made possible by funding from the Iowa Cancer Consortium and the Iowa Department of Public Health.

An Understudied Age Group

The new AYA program started in 2015, the same year that Mobley arrived at the University of Iowa. As a pediatric cancer survivor, she has had a lifelong goal of working on the frontline of cancer care.

“First I wanted to be an administrator,” recalls the Florida native, “but after doing research following graduation around bone marrow transplant, I knew that I wanted to be able to do my own research.”

Terry, who directs the AYA program, invited Mobley to be part of the team that conducted the focus groups. The published paper is planned to be one chapter in Mobley’s dissertation, which focuses on young people and cancer.

“This is an age group that’s really under­studied in terms of their needs,” Mobley says. “There are a lot of changes that occur during this time of life that get overlooked. We want to create a program at Iowa that is aligned with what patients want and need.”

Two dozen AYA patients participated in the conversations, responding to questions that ranged in focus from finances and insurance, to relationships with family and friends, to spirituality and suicide. The results give a much more robust picture about what this group has not been receiving in terms of care and infor­mation, what it needs, and what it wants.

Finding the Gaps

Mobley knew that gaps in care would surface, but she was surprised by some of the results. For example, many participants noted that they would have liked more frequent information about risky behavior, such as drug and alcohol use, domestic violence, and emotional distress. They shared that they hadn’t used the Internet to research their illness very much and would appreciate a list of reputable sources. And although cancer affected their body image, this topic wasn’t touched on by care providers.

One area of the AYA experience that Mobley says might be related to the lower improvement rate for survival is less access to clinical trials.

“Nationally, we know that about 80 percent of adolescents and young adults are treated in community cancer centers,” Mobley says, noting that such centers do not have access to trials. As patients at the UI Hospitals & Clinics, this is not the case; nonetheless, many of the young people interviewed did not seem to sufficiently under­stand the studies, whether they were part of one, and if they’d been offered the opportunity.

“How do we better educate them?” wonders Mobley. “How do we present information in a way that matters to them and that conveys what is most important?”

Thinking Ahead to the Future

Building a strong, patient-driven program is the goal of the UI’s burgeoning AYA cancer program. This means taking into consideration both the quantitative and qualitative realities of this age group. It’s a fact that many AYA patients are underinsured as they move from their parents’ health coverage to their own while entering the workforce. It’s more subjectively understood that this is a group in flux in terms of personal identity, often trying on different friend groups and belief systems, all of which can make them less tethered to the community than older patients.

Mobley and her co-authors point out that AYA patients must be viewed as eventual older cancer survivors. How can the treatment today of a 20-year-old like Mia provide the best overall outcomes for all parts of his or her life?

One new approach of the AYA cancer program that tries to be more mindful of the future is the nurse coordinator who, among other things, presents fertility information to all patients. This task used to be left to individual doctors, and the information was too often skimmed over or presented inconsistently.

A diagram in the paper shows four over­lapping circles of relationships: Self, Cancer, Others, Future. The flower-like symbol that the circles create portrays the multiple facets that the AYA program is striving to address. By treating the whole patient at a complex time of life, the Iowa team hopes for better outcomes in each sector.

This story originally appeared in the fall 2018 issue of InSight magazine

Improving Rural Cancer Care

Stronger collaborations, better information sharing, and innovative approaches are enhancing cancer care in rural areas.

Corn and soybean fields in Minnesota

When it comes to progress against cancer, there’s good news to celebrate. Between 1990 and 2014, the overall cancer death rate in the United States fell by 25 percent. But not all parts of the country shared these improvements equally. Disparities in cancer outcomes continue to be an issue, including in rural areas where death rates are higher than urban areas. Cancer mortality also is decreasing more slowly in rural areas than urban areas.

Mary Charlton, CPH assistant professor of epidemiology and an investigator with the Iowa Cancer Registry, studies rural–urban cancer disparities. In 2015, she and colleagues published a paper that outlined numerous challenges of rural cancer care in the U.S. The barriers to receiving care included limited availability of cancer treatments and cancer support providers (such as oncologists, social workers, mental health care providers, and palliative care specialists), long travel distances for care, transportation barriers, and financial barriers, including having no insurance or insufficient insurance coverage.

Three years later, “a lot of the challenges are the same,” says Charlton, “but now there’s a bigger push, especially at the National Cancer Institute (NCI), to put funding and resources into projects to improve rural cancer care.”

Strengthening Rural Cancer Research

Charlton, along with Anjali Deshpande, CPH clinical associate professor of epidemiology, are co-leading an initiative supported by NCI supplemental funding to the UI Holden Comprehensive Cancer Center (HCCC) aimed at strengthening cancer control research in Iowa’s rural underserved populations. George Weiner, HCCC director, serves as principal investigator.

The goal of the project is to establish a statewide research infrastructure, based at HCCC, that will support rural hospitals and other rural health care providers in their search for new, sustainable cancer-control methods.

“We’ll be working with six Critical Access Hospitals located in rural counties that will serve as the core of a rural cancer research advisory board,” says Charlton. “We want to hear what their biggest challenges and interests are.”

Critical Access Hospital (CAH) is a designation given to eligible rural hospitals by the Centers for Medicare and Medicaid Services. The CAH designation is designed to reduce the financial vulnerability of rural hospitals and improve access to health care by keeping essential services in rural communities. These hospitals receive certain benefits, such as cost-based reimbursement for Medicare services.

Every three years CAHs conduct a Community Health Needs Assessment and develop a strategic plan to address their findings.

“We’ve looked closely at many hospitals’ needs assess­ments, and a lot don’t mention cancer as one of their priorities, or if they do mention it, they don’t have a lot of data in their plan to help guide them,” Charlton explains. “The Iowa Cancer Registry has great data and resources that we can help provide to these hospitals.”

The Iowa Cancer Registry gathers statistics on cancer incidence and mortality at the county level. This information can be used to generate maps and reports that provide actionable, relevant evidence to guide community health assessments and cancer control decision-making in the six identified counties.

The project will rely on established collaborations among HCCC, the Iowa Cancer Consortium, and the Iowa Cancer Registry, while building new relationships with the UI Rural Policy Research Institute’s Center for Rural Health Policy Analysis and the UI Cancer Prevention and Control Research Network.

The supplemental funding will lay valuable groundwork for additional grants and projects going forward, Charlton adds.

From Diagnosis to Treatment Decision

Patient consulting a doctor in the hospitalCharlton’s research isn’t limited to specific cancers, but “the cancers that tend to be the bigger numbers in rural areas are breast and colorectal cancer because they can be treated by any hospital that has a general surgeon,” Charlton says. “So we see a lot of cancer patients in Iowa—about 40 percent—who go to hospitals that have no specific cancer accreditation.”

Charlton and colleagues recently published a paper that examined rectal cancer patients’ decision-making process about where to receive surgery. Although colon cancer and rectal cancer tend to get grouped together, the two diseases are very different.

“Rectal cancer is much rarer, and it’s a much more complicated surgery and course of treatment than colon cancer,” Charlton points out.

Several studies have shown that rectal cancer patients treated by specialized surgeons who perform large volumes of rectal cancer resections have better outcomes and survival rates compared to patients treated at lower volume centers. Despite evidence of a volume-outcome relationship, less than half of rectal cancer resections are performed by high-volume surgeons in comprehensive facilities.

Charlton’s research team interviewed 15 rectal cancer patients about their decisions regarding where to receive surgery. All lived in Iowa, averaged 63 years of age, and a little more than half resided in non-metropolitan areas.

Overall, the researchers found that advice from primary care physicians, gastroenterologists, friends, and relatives was the most critical factor in choosing a surgical center. And while almost all of the respondents indicated that surgeon experience was important, most didn’t research their surgeon’s experience and none sought a second opinion.

Because Iowa is a very rural state, distance was a factor in the decisions of some of the patients. However, in most cases where patients chose more local, lower volume centers, it wasn’t because they were unable to travel to a higher volume center. Rather, they chose the closer, low-volume centers because they were recommended to them by a local physician or because they were just more familiar with local providers. This highlights the importance of referrals received from physicians who diagnose rectal cancer.

The researchers noted that primary care physicians and gastroenterologists aren’t typically involved with staging, treatment, or follow-up of rectal cancer; are often unfamiliar with the specifics of rectal cancer surgery; and may not be aware that there is a difference in care and outcomes at high-volume versus low-volume centers. As a result, they may base referrals on their professional relationships with surgeons rather than on expertise.

The findings suggest that developing educational inter­ventions to help guide more informed decision-making by patients and referring providers could be beneficial.

Innovative Approaches

Technology offers additional tools for enhancing rural cancer care. Telehealth is the use of electronic information and telecommuni­cations technologies to support long-distance clinical health care, patient and professional health-related education, public health, and health administration, according to the Health Resources and Services Administration.

Instead of remotely connecting rural cancer patients to specialists, it often makes more sense to link rural health providers to oncology specialists, says Marcia Ward, CPH professor of health management and policy and director of the Rural Telehealth Research Center.

“Oncology specialists can serve as consultants and be a resource for primary care providers and other frontline health professionals in rural areas,” Ward explains. “Using telehealth, a family physician can ask questions or say, ‘I have this case, what would be the best referral?’”

But, Ward notes, the telehealth consultant role “raises all sorts of issues about reimbursement” in the current fee-for-service health care system. “There are still challenges to putting this approach into place,” she says.

Other solutions for rural cancer care include outreach clinics, where specialists travel to certain rural sites several times a week or month, thereby reducing cancer patients’ travel time; and incentives and programs to increase recruitment and retention of the oncology workforce.

Although rural cancer disparities can be addressed in a number of ways, Charlton summarizes the goal behind these efforts into one overarching question: “What is the best way to get everyone the best care without making them go farther than they need to go?”

This story originally appeared in the fall 2018 issue of InSight magazine

New report examines elder abuse in Iowa

older adult woman sitting in chairA new University of Iowa study finds that older Iowans who experience some form of abuse have little chance of experiencing any resolution. While most older Iowans are doing well, a large and growing number of Iowans over the age of 65 have become vulnerable, says researcher Brian Kaskie, associate professor of health management and policy at the University of Iowa College of Public Health.

The report, The Elder Abuse Pathway in East Central Iowa, was co-authored by Kaskie and Leonard Sandler, clinical professor of law and director of the Law and Policy Action Clinic at the University of Iowa College of Law.

Older persons face a number of age-related challenges, including diminishing cognitive capacity, increasing physical frailty, and social isolation, which can lead to dependence on others. The researchers identified five different kinds of abuse, exploitation, or neglect that can be experienced by older adults: neglect, self-neglect, financial exploitation, physical and psychological abuse, and sexual abuse and personal degradation.

Researchers examined activities concerning elder abuse in an area of east central Iowa covering more than 1,000 square miles and two metropolitan areas with a population of more than 300,000. To gather their data, the team held a series of meetings with public agents involved with addressing elder abuse. They also conducted interviews, compiled information from law enforcement, and reviewed laws, regulations, and other data.

The researchers found that prosecution of elder abuse is a relatively rare occurrence, meaning that abusers often go unpunished. According to Kaskie, much more could be done to protect older Iowans and prosecute alleged cases.

“Issues pertaining to older adults just do not seem to compete well among the many other priorities of health, law enforcement, and public health agencies,” Kaskie says “For example, while they are by no means sufficient, public efforts to raise awareness of child abuse seem to be much more developed, and there are comparatively higher amounts of public resources being directed to the identification and investigation of child abuse.”

Despite these many challenges, Kaskie thinks the state of Iowa is poised to take several steps forward in the coming year.

“The issue of elder abuse has become a top priority for many citizen based groups and the network of aging service providers,” he says. “There also have been some signs that the legislature and governor’s office may advance this agenda in 2019.”

Recommendations from the report include: increased funding for state and county attorneys to prosecute elder abuse; involving social workers and therapists in the investigative process; funding for individuals and organizations who can serve as guardians for elders; and public awareness campaigns.

“I am hopeful that the citizens of Iowa and the persons who represent them in our government come to see this as an important bi-partisan issue,” Kaskie says. “The number of older Iowans is not getting any smaller and elder abuse is something that is happening in all corners of the state.”

A PDF of the report is available.


Study finds rural tele-ERs save money, improve physician recruitment

Marcia Ward

A new study from the University of Iowa finds rural hospitals that use telemedicine to back up their emergency room health care providers not only save money but find it easier to recruit new physicians.

Marcia Ward, study author and professor of health management and policy in the UI College of Public Health, says the results suggest that expanded use of tele-emergency services could play a key role in helping small, rural critical access hospitals maintain their emergency rooms.

“The study finds that expanding options for provider coverage to include telemedicine in some rural emergency departments has noticeable benefits,” says Ward, whose study was published Dec. 3 in the December issue of the journal Health Affairs. “This supports the viability of critical access hospitals at risk of closing and leaving their communities without local emergency care.”

Read the full story in Iowa Now…

Additional Media Coverage

For Small Hospitals, Telemedicine Can Be a Game-Changer in the ED (mHealthIntelligence)

Rural critical access hospitals benefit from telemedicine in EDs (Health Data Managment)

U-I report finds telemedicine saves money, helps draw doctors (Radio Iowa)

RUPRI policy leader contributes to rural health transformation listening session

Jocelyn Richgels, director of national policy programs for the University of Iowa-based Rural Policy Research Institute (RUPRI), was one of a small number of rural health advocates, researchers, and providers at a recent Centers for Medicare and Medicaid Services listening session on rural health transformation. The meeting took place on Dec. 3, 2018, at the U.S. Department of Health and Human Services headquarters in Washington, D.C.

During the session, Richgels shared information from recent RUPRI rural health policy briefs with CMS Administrator Seema Verma. Ms. Verma highlighted CMS’s goal to more fully implement recommendations from the recently released CMS Rural Health Strategy. The CMS rural health strategy is intended to provide direction on health care issues to ensure the nearly one in five Americans who live in rural areas have access to care that meets their needs.

USPSTF issues recommendation on screening for unhealthy alcohol use

The U.S. Preventive Services Task Force (USPSTF) recommends that primary care clinicians screen all adults, including pregnant women, for unhealthy alcohol use.

Unhealthy alcohol use is increasing among adults. Unhealthy alcohol use is the third leading preventable cause of death in United States. About 88,000 people die each year from alcohol-related causes—deaths that could have been prevented.

Drinking and driving is always unsafe, but it is particularly dangerous among adolescents; one in five teen drivers involved in fatal car accidents had alcohol in their system.

“There isn’t enough evidence to know if screening and providing counseling to adolescents in primary care settings helps address alcohol use,” adds task force chair Sue Curry, Ph.D. “We continue to call for more research and encourage primary care clinicians to use their judgment when deciding whether to screen adolescents.”

This recommendation statement has been published online in the Journal of the American Medical Association, as well as on the Task Force web site.

Read the full press release from the USPSTF Bulletin (clicking this link will download a PDF to your computer)


MHA students win case competition

group photo of Iowa MHA students at U Kansas case competitionA team representing the University of Iowa College of Public Health’s Department of Health Management and Policy won first place at the  2018 University of Kansas Case Competition for First Year Track Students in Kansas City on November 2.

Team members were Coleman Heaney, Alex Smolik, Benjamin Meyer, and Mary Kate Titus.

The first year track competition consisted of nine teams from schools accredited by the Commission on the Accreditation of Healthcare Management Education (CAHME).

A second team of first-year students from the University of Iowa also competed and finished in the top three.