When young people survive cancer, their mental-health struggles are often just beginning

Thanks to advances in treatments, children’s chances of surviving cancer are higher than ever before. But the trauma that patients experience as they deal with the disease can pose a lifelong risk to their mental health, according to a recent analysis published in JAMA Pediatrics.

The meta-analysis of 52 clinical studies measured the prevalence and severity of psychological disorders in over 20,000 young cancer survivors. Overall, childhood, adolescent, and young adult cancer survivors were 57% more likely to develop depression, 29% more likely to develop anxiety, and 56% more likely to develop psychotic disorders in the years following treatment compared to their siblings or healthy members of a control group.

“Young cancer survivors suffer from numerous late effects,” said Joel Milam, a professor in the department of epidemiology and biostatistics at the University of California Irvine and co-director of the Southern California Center for Young Adult Cancer Survivorship Research, who was not involved in the study. “Much of the focus historically has been on medical late effects, like higher risk for cardiovascular disease or [cancer] recurrence. The fact that there are also mental health implications is not surprising at all.”

Indeed, many patients diagnosed with cancer at a young age deal with huge amounts of grief, said Jeanelle Folbrecht, a pediatric adolescent young adult psychologist and director of the Adolescent Young Adult program at the City of Hope clinical research center in Los Angeles.

“[It’s] not just grief over a shortened life, because a lot of people survive — but grief over how their life would have looked like,” said Folbrecht, who was not involved in the study. “Grief over the loss of their physical abilities, their ability to pursue their career choice, their ability to engage in recreational activities or sports.”

The isolating impact of a cancer diagnosis

In particular, the new analysis found that children, adolescents, and young adults who survive cancer face an increased risk for depression many years later, while their risk for anxiety tends to decrease after treatment. Folbrecht said the difference could lie in the severe, acute anxiety that patients often experience while going through cancer treatment, while depression could emerge as patients mature and become better able to process the trauma they experienced.

According to the study, adolescent patients diagnosed with cancer between the ages of 12 to 18 face the highest risk of suffering from severe depression as adults. To Folbrecht, herself the mother of a young cancer survivor, this makes sense.

“They see on social media, their peers meeting the milestones that they wanted to meet — prom, high school graduation, going to college, graduation from college, marriage, establishing a career, having children,” she said.

Many cancer patients, by contrast, may miss such milestones, experience them on a different timeline, or deal with limitations such as disabilities or infertility. In addition, Folbrecht said, many are “taken out of school or away from their friends or isolated because they might be immunocompromised, and their friends don’t know how to interact with them and fall off,” further contributing to depression.

Young people who’d had cancer were also significantly more prone to developing psychotic disorders compared to their peers, according to the analysis. Cyrus Ho, an assistant professor in the department of psychological medicine at the National University of Singapore and the principal investigator of the study, hypothesizes that this finding may be explained by the two-way relationship between mental and physical health.

“Cancer and psychiatric illnesses like depression, anxiety — they have common immunological pathways. It’s all chronic inflammation, and this can actually result in a cascade of changes,” Ho said. “I do think there is a bi-directional relationship. So people with cancer have higher chances of psychiatric illnesses and people with psychiatric illnesses may potentially have an increased risk of cancer.” However, larger, “causative cohort studies” are needed to explore this theory, said Ho.

Both Milam and Folbrecht expressed some hesitations around generally associating cancer with a higher likelihood for psychotic disorders, as psychotic symptoms could be heavily dependent on cancer type, intensity of treatments such as chemotherapy or radiation, and the kinds of medications patients receive. The study did mention a higher rate of psychosis among people with cancers of the central nervous system, but doesn’t mention specifics around medications.

Milam pointed out that some cancer patients could suffer “cognitive impairments from the treatments they receive. Some of those neurocognitive impairments are lifelong as well.” Additionally, a patient’s genetic background could increase their predisposition to psychotic disorders, said Folbrecht.

The study also found that factors like education, income level, and degree of social support can impact an individual cancer patient’s level of risk toward developing psychological disorders. As expected, lower levels of education, income, or social support all correlate with increased risk of psychological difficulties. These factors can often be a proxy for socioeconomic status, said Milam, serving as an “indicator of the overall supportive environment that one has.” Many cancer survivors also face problems entering or re-entering the workforce, further impacting their financial stability.

Despite increased risks of depression, anxiety, and psychotic disorders, the meta-analysis found no significant increased risk for suicide. For Folbrecht, this finding speaks to the unique experiences of young cancer patients.

“Even if my young adult [patients] aren’t living for themselves, they are living to prevent the grief of their family members. So they want to live because they don’t want their family members to grieve,” she said.

Ainsley Ryan Lee, the lead author of the meta-analysis, said that more research is needed to answer questions like how the mental health of young cancer patients continues to evolve over longer trajectories and which demographics could stand to benefit most from psychosocial intervention.

Cancer care for the ‘whole human being’

Despite the considerable mental health burden faced by young cancer survivors, many still lack access to psychosocial supportive care. “There are way more pediatric oncologists than psychosocial clinicians” at almost every pediatric cancer center, said Abby Rosenberg, the chief of pediatric palliative care at the Dana-Farber Cancer Institute. While most patients will “have an assigned social worker, the degree to which that person can provide real, comprehensive, longitudinal mental health is totally different depending on where you are,” she said.

Milam adds that young adults are particularly underserved, saying that many are “lost in transition” when they age out of pediatric care. Due to the relative rarity of childhood cancer, doctors who provide care to adults are often not familiar with the specific needs of young cancer survivors, according to Milam. “Chances are they’re not getting all the screening tests they need, let alone the psychosocial support they need,” he said.

In a step toward improving access to psychosocial support, Rosenberg has developed a skills-based coaching program for young cancer patients. The program, called PRISM, stands for Promoting Resilience in Stress Management and teaches patients tools on how to manage stress, set goals, reframe experiences, and find moments of gratitude.

“We wanted to create a basic, comprehensive supportive care program that would teach resilience to anybody — whether or not you were already in distress — because we knew that the cancer experience, if it wasn’t stressful now, would become stressful at some point,” said Rosenberg.

In a small, randomized clinical trial where the PRISM intervention was introduced during cancer treatment, PRISM recipients reported improved psychosocial outcomes two years later.

“When you deliver it during cancer treatment to adolescents and young adults, it seems to work,” said Rosenberg. “They report higher levels of their own sense of resilience, they report higher hope, and they report less psychological distress and better quality of life.”

PRISM is one of the only interventions with clinically proven efficacy that exists. However, it is currently restricted to research settings, which Rosenberg says is “a huge problem … the reason we haven’t made it publicly accessible is the scalability question.” Rosenberg has developed an app version of PRISM and is preparing to conduct future clinical studies with the goal of finding the balance between app-based and live coaching that can still be effective.

Rosenberg says studies like the meta-analysis are important because they represent a step toward both normalizing the inevitable stress that comes with a cancer diagnosis and the importance of mitigating it.

“It would be great if we could systematically recognize that there is a whole human being in front of us who has just been diagnosed with cancer, and we need to think about all of their needs,” she said.