Executive Director, President, and Co-founder
National Coalition of Oncology Nurse Navigators
One of the central themes of the 3rd Annual NCONN Conference was navigating young adults with cancer. Young adults facing a cancer diagnosis have unique needs and barriers to care and survivorship that can present a difficult challenge to oncology nurse navigators (ONNs) tasked with guiding them through the cancer care continuum.
There are more than 72,000 adolescents and young adults aged 15-39 years who are diagnosed with cancer each year.1 Cancer in young adults is often detected late, and once diagnosed, these patients frequently receive inconsistent treatment and follow-up care.
The needs of young adults with cancer have been ignored historically, leaving these patients feeling neglected and ignored. In the adolescent and young adult (AYA) population, the 5-year survival rate has stayed constant at about 70% over the last 30 years.1 In the past 25 years, the AYA population has seen increased survivorship in only 8 of the 20 most commonly diagnosed cancers. ONNs navigating individuals in this age group require an additional library of resources and a comprehensive understanding of AYA needs. Insurance issues, isolation, and quality-of-life concerns are the top-3 factors to consider when navigating an AYA patient.
ONNs know that when navigating patients, regardless of their age, challenges related to insurance coverage can arise. A child is most likely covered under his or her parents’ health plan, and if not, many states offer low-cost affordable insurance. Older adults often have insurance through their jobs, or through Medicaid or Medicare. AYAs, however, present a greater challenge because many do not have insurance or have aged out of their parents’ plan.
Nearly 21% of the uninsured are aged <18 years, and 63% are aged <34 years. Thus, AYAs are disproportionately uninsured relative to the overall population.2
Working AYA patients may have elected not to insure themselves to avoid a decrease in their net take-home pay, or from a belief that insurance is unnecessary for younger individuals because they generally face fewer health problems.
Finding resources to cover AYA patients’ medical costs starts with an assessment. Is this patient eligible for a state program that is in existence for the uninsured? Is this patient unaware that he or she is actually still insured under his or her parents’ plan?
Navigators treating AYA patients who have insurance, employment, or other legal issues related to their cancer should consider referring their patients to the Cancer Legal Resource Center (CLRC). The CLRC provides a national, toll-free helpline (866-THE-CLRC), offering callers confidential information about relevant laws and resources for their particular issues, with available services including advice from attorneys, insurance agents, and accountants.
AYAs often receive lower levels of social support than other patients with cancer. A person aged 34 years who is diagnosed with cancer is not young enough to get the sympathy/support that a child with cancer receives. Additionally, AYAs are often ineligible for the magnitude of services available to the over-50 crowd, which have been established to assist in the normal aging process.
Thus, ONNs must often help AYAs obtain the social support they need, which can be highly challenging. Patients in the 15-39 age range are at the prime of their life, and the average age of the ONN is 52. These 2 age groups have uniquely different perspectives regarding life. Navigators are thus faced with finding resources outside of their own demographics and, perhaps, comfort zone.
Again, assessment becomes critical when navigating the AYA. What resources are age-appropriate? Does your facility offer programs specifically designed for the AYA?
One crucial resource for ONNs is the I’m Too Young For This! Cancer Foundation (iy, stupidcancer.com), which offers a wealth of resources and information for AYAs. iy offers local happy hours, tweetups, retreats, financial scholarships, peer groups, fertility advocacy, legal assistance, relationship workshops, and an annual young adult cancer conference. The organization’s website is a one-stop resource and is essential to the ONN navigating the AYA.
When navigating AYA patients during their transition from active treatment to survivorship, ONNs need to consider several quality of life issues. Fear of recurrence, latent treatment effects, financial problems, employment issues, fertility problems, changes in physical appearance, poor self-image, and dating are just a few of AYAs’ potential concerns.
ONNs must recognize that survivorship starts at diagnosis. Assessment of what is important to the AYA should be done when a treatment plan is being formulated at the AYA’s initial visit. This will help ensure the best possible quality of life for the AYA during survivorship.