Although adolescent and young adult cancer patients (AYAs) are a quickly growing population, few of the cancer programs we spoke to said they're investing in survivorship and follow-up care for this particular demographic—a dearth of support that could affect your organization's ability to attract and retain AYA patients for their cancer care.
AYAs are defined by the American Cancer Society as "those who receive diagnoses between ages 15 and 19 (adolescents) or 20 and 39 (young adults)." Compared to older demographic cohorts, AYAs deal with heightened financial and psychosocial barriers to care without tailored or sufficient support, which means their treatment adherence often suffers.
According to Bijal Shah, a hematology oncologist and associate member of Moffit Cancer Center in Tampa, Florida, an expected "50% to 60% (of AYAS) will be cured if they can follow therapy to the letter," but "[a]nything that takes away our ability to give a goal amount of therapy over a specific amount of time is going to compound th[e] risk" of non-adherence. Here's why—and how—you can start investing in critical areas of survivorship and follow-up care for AYA patients.
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Despite increases in AYA populations, tailored survivorship care is lacking
According to our 2019 Trending Now in Cancer Care Survey, conducted jointly with the Association of Community Cancer Centers, 29% of cancer programs have noticed an increase in their AYA populations. Among those organizations, a majority are offering psychosocial services to this population, but only 25% have invested in tailored survivorship programs and only 31% have invested in AYA-specific support groups.
These findings are especially grim because AYAs face a higher risk of side effects and secondary conditions caused by treatment, and their age makes them much less likely to make follow-up appointments and get screenings and medication.
Our 2019 Cancer Patient Experience Survey backs this up, showing that the top reasons for AYAs missing appointments are very different than the top reasons for the older cohort. The top reason for both cohorts was, "I did not feel well," but the responses differed markedly after that. The second-most common resource for missed appointments, for AYA patients, was "my insurance didn't cover it," followed by "I couldn't afford the costs" and "it conflicted with my work schedule."
In stark contrast, for the older cohort, where those three were ranked 10th, 7th, and 6th, respectively.
Ultimately, the findings support larger trends for the younger population, including how AYAs are generally in the process of becoming independent, many of their worries are financial, and health concerns are often on the back burner—and the first to be cut.
Support and survivorship matters more to AYAs
Not having a tailored survivorship program and support system in place for AYA patients isn't just a risk to patients. It also can affect your organization's ability to attract and retain AYA patients for their cancer care.
After isolating responses from our 2019 Cancer Patient Experience Survey to focus on 18-34 year olds, we found a number of differences in the importance of several features related to survivorship and support services when compared to older patients. For example, we found:
- When asked "which service provided by a cancer center would have been the most valuable to you," survivor support was the 5th-ranked response in the younger cohort, compared to 8th-ranked in the older cohort. Unsurprisingly, interest in survivorship group visits was also higher among AYAs, moving to 64.4% from 44.4% in the older cohort.
- Among respondents who changed cancer care providers, reasons for the change differed between cohorts as well. "I wanted better support services" ranked as the 8th-highest reason among the older cohort, but jumped to the 2nd-most important reason for AYAs.
- Speaking specifically about survivorship care, "A care plan which outlines my treatment and potential side effects" was the highest-ranked program feature for AYAs, while coming in second for the older cohort.
It is easy to see in this data the importance that AYAs place on survivorship and support services.
4 steps to accommodate your AYA population
It's clear that cancer programs need to collaborate with AYAs to engineer solutions to their unique issues.
According to Shah, "[Cancer programs] have a responsibility to try and identify therapeutic approaches that patients have the potential to be more adherent with. In terms of trying to improve adherence, the key here is shared decision-making." In other words, engaging your patients from the beginning—as well as helping them think through their goals—is crucial to ensuring adherence in the long run.
We've put together a few steps below for you to think through while trying to accommodate your AYA population:
- Promote the most appropriate treatment options with a shared decision-making program. Use UCSF's Patient Support Corps as an example of how to actively engage your patients in their care.
- See your strengths and get off the ground. Use our survivorship program resource grid to serve as a diagnostic and follow up with the resources required to develop basic and advanced survivorship programs.
- If non-adherence is being caused by financial issues, make sure to include information on choices AYAs have available to limit their costs. Navigating AYAs toward lower cost labs for testing and other helpful resources can make or break the ability of a patient to hit 100% of the goals of their plan.
- Make sure that your AYA patients understand the benefits of survivorship resources and how they can tap into them. Take a look at our best practices for activating patients and engaging them in survivorship services.
For more information on the 2019 Trending Now in Cancer Care survey, check out the Oncology Roundtable's insights and the Association of Community Cancer Centers' blog.
Citations: Willingham S, "Improvements Are Needed in Adolescent and Young Adult Cancer Follow-Up Care," Cancer Updates, Research & Education, https://www.curetoday.com/publications/cure/2019/fall-2019/improvements-are-needed-in-adolescent-and-young-adult-cancer-followup-care.
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