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Survivorship Care in AYA Patients: Battling the Loss to Follow-up

Evidence-Based OncologyAugust 2018
Volume 24
Issue 10

For insights on this issue, Evidence-Based Oncology™ spoke with Lynda Kwon Beaupin, MD, a pediatric hematologist-oncologist who recently became the director of CanSurvive, the pediatric cancer survivorship program at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida. Beaupin and her colleagues in the Consortium of Adolescent and Young Adult Cancer Centers, which includes oncologists from major cancer centers including Johns Hopkins, are working to address the nuances that come with treating adolescent and young adult cancer patients and looking for ways to increase their quality of life.

Cancer survivors of any age are at risk of many adverse effects once their treatment is completed, but 1 risk is often overlooked: being “lost to follow-up.”

Adolescent and young adult (AYA) cancer survivors are at a particularly high risk of being lost to follow-up, which means the patient has not had any form of contact with a physician since completion of treatment. If cancer survivors are not being seen for routine care, their primary care physicians are no longer aware of conditions or risk factors that these patients may be exhibiting. That’s a problem, because this population has unique risks for certain heart problems, infertility, and secondary cancers that may arise from previous treatment.

The AYA cancer population is defined as patients aged 15 to 39 years. Within this cohort, about 70,000 people are diagnosed with cancer each year in the United States, accounting for about 5% of total cancer diagnoses in the United States.1 In recent years, investigators found that AYA cancer patients are now expected to live past the 5-year mark, though survival and health outcomes seem to differ by disease type, according to recent research.2

For insights on this issue, Evidence-Based Oncology spoke with Lynda Kwon Beaupin, MD, a pediatric hematologist-oncologist who recently became the director of CanSurvive, the pediatric cancer survivorship program at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida. Beaupin and her colleagues in the Consortium of Adolescent and Young Adult Cancer Centers, which includes oncologists from major cancer centers including Johns Hopkins,3 are working to address the nuances that come with treating AYA cancer patients and looking for ways to increase their quality of life.

The AYA Cohort: A Different Breed of Patient

The concept of survivorship care is fairly new among young adult patients with cancer, according to Beaupin. For pediatric patients, the transition to surveillance and long-term care after completing treatment has become standard—that’s been done in the field for many years. However, for a young adult or adolescent cancer survivor, the years after treatment may be approached quite differently.

Pediatric centers tend to unify young patients who are being treated for similar diseases. Conversely, in the “adult cancer world,” Beaupin said, patients are unified by age, not by disease type or where they were once treated, and the focus is generally on the type of treatment they receive. Once treatment ends, there isn’t a defined period of long-term survivorship care, as is traditionally seen in pediatric cancer, she said.

“I think maybe the lack of stressing that they have ongoing risks beyond finishing their cancer treatment hasn’t been at the orefront, and therefore, [the importance of follow-up is] not obvious to them,” Beaupin said. “In turn, we’re not seeing them as much as we would like, years from their diagnosis and completion of treatment.”

Physicians often do not stress to AYA patients the need for follow-up visits after the conclusion of treatment, she said, noting that oncologists should advocate for their patients to return for annual well visits.

Fertility and Cancer Care

Certain dangers around being pregnant or potentially becoming pregnant, both during and after cancer treatment, are common concerns among older AYA patients. Fertility risks associated with treatment often go undiscussed in younger patients, but patients should be having these conversations with their doctors, Beaupin said.

“A distinct risk for younger patients is the fertility aspect,” she said, which depends on the type of therapy and radiation used. “That’s been linked with quality of life issues down the road, as well. So, I think we have to do more in terms of letting our younger population know that this is a risk they may have later on.”

Beaupin stressed that after completion of chemotherapy treatment, physicians should reassess individual fertility risks so that, as patients enter their reproductive years and consider family planning, they understand their options. Fertility risks to address by gender:

• Women: Certain treatments, such as chemotherapy, radiation therapy, or surgery can affect fertility. Experts recommend meeting with a reproductive endocrinologist to address cancer-related fertility issues and options, such as freezing eggs. In some cases, cancer treatment can cause early menopause. In other cases, menstrual periods stop during treatment but return later, preserving the ability to have children.4 Children and young women have a larger ovarian reserve, or amount of eggs in the ovaries, than older women do and therefore are less likely to experience immediate menopause and infertility after chemotherapy.

• Men: Treatments such as chemotherapy, radiation therapy, and surgery also can cause fertility-related adverse effects in men. For some men, cancer treatment can lead to permanent infertility. Other men report that treatment stops or slows down sperm production for years, and though the ability may return, it may not be the same as before treatment. Boys who receive treatment before reaching puberty may have less sperm damage. However, stronger treatments or those at a higher dose, such as chemotherapy for a bone marrow transplant, could cause permanent future infertility. The American Society of Clinical Oncology (ASCO) recommends freezing and storing semen, or sperm banking, for the preservation of fertility.5

• Everyone: In addition, practicing safe sex is extremely important, particularly for patients receiving chemotherapy, because treatment breakdown and by-producted are excreted through bodily fluid. All patients should practice safe sex and use some form of contraception, for their own protection and that of their partners.

Beaupin noted that even if physicians aren’t discussing fertility with their AYA patients, she has noticed that some have preconceived notions about fertility among patients with cancer or survivors: “Sometimes they automatically assume that their offspring will have either an increased risk for cancer or have more defects, physical or cognitive, because of their history of cancer, and many may elect not to have children.”

In a recent study,6 investigators sought to identify just how many cancer survivors elected to have children. The findings revealed that regardless of cancer type, survivors achieved fewer pregnancies. Specifically, the chance of a woman becoming pregnant more than 5 years after diagnosis was notably lower in women with breast, cervical, and brain/central nervous system tumors and leukemia.The investigators recommended appropriate fertility counseling of all females of reproductive age at the time of diagnosis and going forward. This affirms Beaupin’s beliefs that physicians must do a better job of addressing the fertility aspect of treatment for AYA patients with cancer—both men and women—and inform them not only of their risks but also their fertility options.

The Importance of Survivorship in Cancer Care

In 2006, the Institute of Medicine recommended that every cancer patient receive an individualized survivorship care plan that includes guidelines for monitoring and maintaining health.7 Since then, cancer survivorship care—defined as a care plan that helps a patient, oncologist, and primary healthcare providers work together to address medical and psychosocial challenges that may arise post treatment—has grown tremendously.

Emphasizing the importance of survivorship care, Beaupin said that a plan improves the quality of life for cancer survivors. Having a support system and follow-up after treatment is crucial because some of the effects of cancer treatment can be long-lasting.

According to CDC data, AYA cancer survivors in the United States are more prone to a number of adverse effects. In a survey conducted in all 50 states and 3 US territories, researchers collected data from more than 400,000 respondents.8 The study found that compared with respondents who never had cancer, more AYA cancer survivors had higher rates of heart disease (14% vs 7%), diabetes (12% vs 9%), asthma (15% vs 8%), disability (36% vs 18%), and high blood pressure (35% vs 29%).9

“The importance, really, is that we need to recognize that although our focus when [a patient] is initially diagnosed is that we cure them—and I do think that’s an important priority to have—these survivors are telling us that many years later, they still have a lot of effects,” Beaupin said.

Adverse Effects Among Survivors

Some effects are seen commonly among cancer survivors regardless of disease state, such as what is referred to as chemo brain. Patients use this term to describe the cognitive effects of treatment, such as when they can no longer efficiently perform tasks that they completed with ease before treatment. Memory can be affected, as well.

Another adverse effect of treatment is fatigue, which can be long-lasting. It can be difficult for physicians to determine the cause for why certain patients experience it. Often, after treatment is completed, a patient may experience adverse effects that aren’t apparent to others. “Their hair might grow back, [and] if they were working before, they certainly strive [to go back] to work,” Beaupin said. “By all outward appearances, for their friends, families, and colleagues, they may look like they’re back to normal, and people may expect that of them. But what we’ve learned from survivors is that they still feel different, either vastly or just a little bit, and it’s not obvious to anyone physically on the outside, which makes it even harder.”

In Beaupin’s experience, this can leave survivors feeling disappointed because they believe they shouldn’t continue to notice the effects of treatment. Sometimes patients themselves don’t expect to have symptoms years later, either, and don’t know where they can go to share these concerns. “That’s the whole point of why we now have survivorship clinics offered around the country: to try [to] learn more about survivors and how to address these issues—how to identify them, really,” she said.

Beaupin’s Research: Using Social Media to Engage AYA Cancer Patients

Earlier this year, at ASCO’s annual Cancer Survivorship Symposium held in Orlando, Florida, in February, Beaupin had the opportunity to share what she has learned about survivors. Her research documented how nearly half of the 2367 AYA cancer survivors she studied were being lost to follow-up after even just a few years post treatment.10 Since presenting her research, Beaupin has sought to find ways to engage this cohort of patients and bring them back to cancer centers.

Beaupin and her team facilitated an informative paper mailing in an attempt to educate patients about the risks, as well as invite them back to the center, but her efforts fell on deaf ears. “Although a simple mailing would have worked perhaps for another population, certainly, for this population, it hasn’t, “ she said. “We still need to work together as a medical community to understand how we can reach out to this population and engage and involve them in this process.”

A second attempt, however, saw more success. In collaboration with the University of Buffalo and Roswell Park Cancer Institute (Beaupin’s former workplace), both in Buffalo, New York, the team developed Photographs of Meaning. This program for AYA survivors is based on an app called Pixtory, which allows the user to post a photograph with either a vocal or written narrative for why they chose it. The user then shares it in an online platform with other survivors, who respond in the form of “likes” or comments.

“What we’ve learned from them is that they have a lot of psychosocial issues and a lot of distress related to having gone through their cancer treatment that we aren’t necessarily addressing very well,” Beaupin said. “Again, I think it has a lot to do with this population being very difficult to engage and learn about.

“So, we’ve introduced this Photographs of Meaning program through this online app to try, and we’re onto our second cohort, but it looks like it’s quite beneficial for young adult survivors to remotely connect with us using this method,” she said. “We’re actually very excited about it, because it’s traditionally been done with actual photos that people take, and then they get together in a support group setting and talk about their photos.”

Support groups can be hard for people in general, but especially young adults, to attend. Through this tool, Beaupin gives adolescents the opportunity to share their experiences and meet other cancer survivors who can relate to what they’re going through.

Her overall message was clear: Engaging AYA patients is an uphill battle. To address their ongoing medical and emotional needs, physicians must first bring them back to the cancer centers. Although there is no “right way” to achieve this, Beaupin said, oncologists and healthcare professionals must come together to bring patients back for routine follow-ups, so they can receive the healthcare and treatment they deserve but may not know they need.


  1. Adolescents and young adults with cancer. National Cancer Institute website. cancer.gov/types/aya. Published January 31, 2018. Accessed July 16, 2018.
  2. Anderson C, Smitherman AB, Nichols HB. Conditional relative survival among long-term survivors of adolescent and young adult cancers [published online May 9, 2018]. Cancer. doi: 10.1002/cncr.31529.
  3. About CAYACC. Consortium of Adolescent and Young Adult Cancer Centers website. cayacc.com/about. Accessed July 16, 2018.
  4. Fertility concerns and preservation for women. Cancer.Net website. cancer.net/navigating-cancer-care/dating-sex-and-reproduction/fertility-concerns-and-preservation-women. Published April 2018. Accessed July 16, 2018.
  5. Fertility concerns and preservation for men. Cancer.Net website. cancer.net/navigating-cancer-care/dating-sex-and-reproduction/fertility-concerns-and-preservation-men. Published April 2018. Accessed July 16, 2018.
  6. Anderson RA, Brewster DH, Wood R, et al. The impact of cancer on subsequent chance of pregnancy: a population-based analysis. Hum Reprod. 2018;33(7):1281-1290. doi: 10.1093/humrep/dey216.
  7. Survivorship care plans. American Cancer Society website. cancer.org/treatment/survivorship-during-and-after-treatment/survivorship-care-plans.html. Accessed July 16, 2018.
  8. About BRFSS. Centers for Disease Control and Prevention website. cdc.gov/brfss/about/. Accessed July 16, 201
  9. Adolescent and young adult cancer survivors. CDC website. cdc.gov/cancer/dcpc/research/articles/adolescent_young.htm. Updated August 6, 2012. Accessed July 16, 2018.
  10. Beaupin, L. Come back: identifying targets to engage young adult survivors who have been lost to follow-up. Presented at: ASCO 2018 Cancer Survivorship Symposium; February 16-17, 2018; Orlando, FL. Abstract 29. meetinglibrary.asco.org/record/157765/abstract.
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