September 22, 2017
By Kristi Birch
Abbey Elsbernd was beginning her third year at the University of Kansas School of Medicine when she learned she would be spending the year at KU instead-in Denmark, that is, where the capital city's major university, the University of Copenhagen or Kobenhavns Universitet, also is known as KU.
Elsbernd is one of seven University of Kansas students who have been named Fulbright Scholars for the 2017-2018 school year. Originally named an alternate back in May, she received a letter notifying her in August that a space opened up and she had been admitted to the University of Copenhagen as a Fulbright Scholar, giving her just a couple of weeks to pack up and head to the university in Denmark.
Through June 2018, Elsbernd will research how a special oncology ward designed specifically for adolescents and young adults at Rigshospitalet, one of Denmark's largest hospitals, benefits those patients and how it can be improved. Ultimately, Elsbernd would like to see her work used to create a framework to develop similar oncology units in the United States and elsewhere.
A patient population that falls between the cracks
Adolescents and young adults who are diagnosed with cancer can have a uniquely difficult time coping with their illness because they are too old for the pediatric ward, yet they are not fully independent adults, either. These patients (who are typically between the ages of 15 and 29 years of age) receive a serious diagnosis that can derail them during what is typically a milestone-rich period of life. A time when they would normally be setting or reaching educational and career goals, having romantic relationships, establishing their own families, and taking on roles in their communities. "And they're also often removed from their social group right when social development is important," said Elsbernd. "In America, we have cancer patients who cannot attend high school or college. And the older young adults can have problems with relationships or planning for the future-financially, socially, academically."
Elsbernd, who earned her undergraduate degree in biology from Baker University, says she has long been interested in the science of medicine, especially hematology and oncology, but her interest in the psychosocial and economic aspects wasn't kindled until her junior year of college. Then, she participated in a pre-medical program in London, England, that focused on the intersection of culture, accessibility, and health care. "I learned that genetic breakthroughs were not enough to help others with critical outside needs," she said. "In medicine, a patient's personal well-being plays a role as well."
After her first year of medical school, Elsbernd began researching areas of medicine that are underexplored or underserved, and she found some articles about adolescent and young adult cancer patients. "It's a developing field, so there was room to explore and expand the work," she said.
A holistic approach
The research that Elsbernd is conducting as a Fulbright Scholar is a continuation of the work she began as Clendening Summer Fellow in 2016. She spent half of last summer in Copenhagen and the other half in Kansas City studying and comparing stress levels in adolescent and young adult oncology patients within the context of each country's health care system and on the basis of their insurance situation.
During that summer, she got to witness first-hand Kraeftvaerket, the cancer ward and support group for adolescent and young adult patients at Rigshospitalet. Created by adolescent specialists in 2015, working closely with and for that population, "Kraeftvaerket stood out to me as a novel and incredibly beneficial approach for adolescent and young adult care," said Elsbernd.
The ward is run by a youth coordinator, a panel of young adults and teens who have had cancer, and doctors, nurses, and mental health professionals, along with others trained specifically to treat this age group. They organize many activities and social outings, including bike rides and evenings at restaurants. Celebrities even come through. Last year, Chris Martin from Coldplay was there.
That's impressive, but the important thing, Elsbernd said, is the autonomy that patients regain. Patient voices are not just heard, but have a direct role in the activities of the Kraeftvaerket: "The Kraeftvaerket is focused on giving autonomy back to these patients. They are doing what they can to build a community and return to these patients the social aspect of life and the choices that have been taken away from them."
Making what works, work better
This year, Elsbernd will be working with a pediatric oncology lab (known as Bonkolab) at the University of Copenhagen to study patient opinions on the activities of the Kraeftvaerket. She also will do a comprehensive analysis on participation and what patients suggest for improvement, while shadowing hematologists and oncologists to gain more clinical knowledge. She plans to survey the patients about the impact Kraeftvaerket has had on their lives, and also to look at the patients demographically to address any specific results that may be affected by race, diagnosis, gender, sexuality, and socioeconomic status: "I want to know, how dothey use those resources? How can we make it better?"
Elsbernd ultimately would like to incorporate what she learns in Denmark into a career focused on adolescent and young adult oncology patients in the United States. "The one thing I can say for sure now, is that youth-oriented facilities help these patients," she said. "It's so important to provide support for patients who may not have it and who may feel like they've lost support because of cancer."