Dr. Kirchhoff and her research team have a collective goal of understanding and improving the health of pediatric, adolescent, and young adult cancer survivors. Using the definition from the National Cancer Institute (NCI), we define a cancer survivor as any person diagnosed with cancer from the time of diagnosis until the end of life.
Cancer survivorship research encompasses studies designed to understand
- The physical, psychosocial and economic issue of cancer.
- Issues related to survivors' access health care and follow-up treatment, treatment of health late effects, and quality of life.
- The needs of family members, freinds and caregivers who are also part of the survivorship experience.
Why do we focus on cancer survivorship?
In the United States there are over 14 million cancer survivors. At the end of cancer therapy, a survivor often has to adjust to physical and emotional changes that can arise as a result of their treatment. As a team, we aim to understand survivors’ health care costs, quality of life, and other outcomes, with the goal of using this information to design interventions to support and educate cancer survivors. We explore these research questions through the analysis of patient surveys and health care administrative data. We also use qualitative methods such as semi-structured interviews and focus groups.
Our work is guided by NCI’s Cancer Control Continuum, a framework that highlights the different points in cancer care including prevention, detection, diagnosis, treatment, end of life, and survivorship. This framework helps us to identify research gaps and areas of needed support. As we design studies, we consider how important patient factors such as socioeconomic status, geographic barriers, and social determinants of health such as race and ethnicity, contribute to differences in survivorship care.
The most important part of our research is working with patients, families, and providers to ensure that our studies are designed to consider their unique perspectives and needs.
Examples of Current Studies
In Utah, approximately 1,200 adolescents and young adults (AYAs), ages 15 to 39, are diagnosed with cancer each year. Connecting these patients to appropriate services is challenging because many AYAs with cancer are uninsured and require age appropriate services that are often not available in pediatric or adult settings.
The Huntsman-Intermountain Adolescent and Young Adult (HIAYA) Cancer Care Program is a new program to improve health outcomes for AYAs with cancer in the five-state Intermountain West (Utah, Idaho, Montana, Nevada, and Wyoming). The goal of HIAYA Cancer Care is to provide services to link AYAs diagnosed with cancer between the ages 15-39 with information on survivorship, fertility, and other supportive services through patient navigation.
AYAs have less experience with health insurance than older patients. In the summer of 2019, Dr. Kirchhoff was awarded an R01 from the National Cancer Institute to help improve health insurance literacy among adolescents and young adults (AYA) with cancer in the HIAYA program. HIAYA-CHAT will conduct interviews with AYA cancer patients and test a program to improve their health insurance and cost-related literacy during their cancer treatment.
The HPV vaccine for Oncology Patients (HOP) is a study that involves cancer survivors, parents and health providers. Our goal is to identify family and/or provider barriers to the HPV vaccine after cancer treatment and what factors play into making decisions about vaccinations. This information will help our research team develop a tool on how to best provide families with cues to action for HPV vaccination from their oncologist.
Many childhood cancer survivors face new and continued health care challenges such as cardiac complications and reproductive issues. These challenges may require ongoing care to monitor and treat long-term effects of their cancer throughout adulthood. These effects often appear decades later and it’s important for survivors to have access to quality healthcare and coverage. Health insurance coverage has been hard to obtain among childhood cancer survivors and can also be difficult to navigate once someone is insured.
The goal of the HINT study is to test a psychoeducational health insurance program among survivors from the national Childhood Cancer Survivor Study. This project is currently supported by the American Cancer Society (PI Elyse Park).
Pulmonary Effects of Air Pollution among Childhood Cancer Survivors
We are the first team ever to examine the short-term effects of air pollution on the lung health of childhood cancer survivors. Several treatments for childhood cancer can cause lung problems and reduce function of this critical organ. Sdditional exposure to lung irritants from air pollution could worsen existing lung conditions among childhood cancer survivors. Air pollution is a serious problem in Utah and known to have adverse effects on the lungs of healthy children. Identifying how this environmental problem affects vulnerable cancer survivors could help reduce future hospitalizations and lung conditions. This project is supported by the St. Baldrick’s Foundation.
Young Adult Cancer Caregivers Social Media Study
Taking care of a cancer patient as a young adult is a unique experience. Many young adults might not expect that they will take care of a cancer patient. They might also be taking care of young children, finishing their education, or starting new careers. We know that people who help take care of cancer patients need support, but we know very little about how young adults get help from their friends, family, and other people in their lives.This study helps us learn how to help young adults find the information, emotional, and social support they need when their loved one is experiencing cancer. We want to learn more about how using social media might help or hinder young adults who take care of cancer patients.