Young adult cancer survivors struggle to get back to normal

Cancer survivors often talk about wanting to get back to normal, but a new study indicates many young adults who survived the disease struggle with attaining this goal two years after their initial diagnosis.

The longitudinal study is among the first seeking to understand the social functioning among adolescents and young adults who have had cancer.

The research is important to help these young survivors better reintegrate into society,” said study co-author Brad Zebrack, a professor of social work at the University of Michigan.

Researchers collected data from 215 cancer patients aged 14 to 39 years who visited five medical facilities nationwide between March 2008 and April 2010. Patients completed a self-report measure of social functioning within the first four months of diagnosis, and again at 12 months and 24 months later. They also answered questions about their social interactions with family and friends, psychological needs and mental health.

Thirty-two percent of the survivors reported consistently low social functioning over time – and some had been off treatment. Zebrack and colleagues say this could stem from the transition from treatment to off-treatment survivorship, a time fraught with new challenges to a cancer survivor, including the negative impact on finances, body image, work plans, relationship with spouse/significant other and plans for having children.

In addition, those reporting low scores on social functioning also had high levels of distress, possibly reflecting an impaired ability to reintegrate into social activities due to the effects of cancer, the study showed.

This finding highlights the need to screen, identify and respond to the needs of high-risk adult-young adolescent patients at the time of diagnosis and then monitor them over time,” said Zebrack, an expert with the U-M Institute for Healthcare Policy & Innovation. “They are likely the ones most in need of help in managing work, school and potentially problematic relationships with family members and friends.”

Current research indicates that young adult cancer patients benefit from support programs that put them in touch with other young adult cancer survivors.

They do not find being in a support group with ‘people my grandma’s age’ to be all that helpful,” said Olga Husson, the study’s lead author and a researcher at Radboud University Medical Center in the Netherlands.

The study’s other authors were Christine Aguilar of the University of Texas Health Science Center, Brandon Hayes-Lattin of the Oregon Health and Science University and Steve Cole of HopeLab Foundation.

The study appears online in the journal Cancer.

Husson et al. Cancer in adolescents and young adults: Who remains at risk of poor social functioning over time? Cancer. 2017;123(14):2743-2751. doi: 10.1002/cncr.30656 [Abstract]

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Young adult survivors most distressed after leukemia and lymphoma treatment

Two University of Colorado Cancer Center studies published in the Journal of Psychosocial Oncology show that young adult survivors (ages 18-39) of leukemia and lymphoma are more likely to report high distress than older survivors (ages 65+). Specifically, 45 percent of younger patients report moderate-to-high distress, whereas only 18 percent of older patients report similarly elevated levels. Interestingly, in both groups this distress was not affected by time since treatment – distress was just as likely to be high in survivors who had completed treatment four years prior as in survivors who were three months out of treatment.

Now that patients are living longer with cancer and after cancer, it is becoming more and more important to look at how survivors are living. What is their quality of life and how can we help make it better?” says Whitney Jones, PhD, the studies’ first author, working with data collected by Carly Parry, PhD, research scientist at Kaiser Permanente, California. Both Jones and Parry are family members of cancer survivors. Jones says, “It was natural – I just kind of fell into survivorship research.”

Jones explains the effect of age on distress using a framework called the Lifespan Perspective. Because there is an expected social, cultural and developmental course of a person’s life, an event (such as cancer) that is highly disruptive in one lifespan stage may be less disruptive in another.

For younger survivors, cancer is out of context,” Jones says. “When you’re under forty, you’re finishing your education, entering the workforce, starting a family, and cancer may be interpreted as disruptive and unexpected in that phase. On the other hand, some of our older survivors said things like, ‘Cancer isn’t the most difficult thing I’ve experienced in life.’ And they knew friends and family members who had dealt with similar cancer experiences,” she says.

One paper surveyed 477 cancer survivors, using a widely-used measure of distress after trauma and several items from a measure of quality of life in cancer survivors. These measures allowed Jones, Parry and colleagues to ask which factors of a cancer survivor’s life after treatment are the best predictors of persistent distress after treatment completion. Survivors under age 40 had the highest prevalence of distress, while a risk profile showed that a person’s fear of cancer recurrence was the best predictor of elevated distress – people who feared recurrence were most likely to also report high overall distress levels. High financial burden due to cancer treatment also predicted distress.

The second study used interviews with 51 leukemia survivors to explore the human side of these numbers and better understand the sources of distress as articulated by survivors themselves.

For example, this was before the Affordable Care Act, and we had one survivor who talked about having only the basic college student insurance when he was diagnosed. After treatment he discovered he had substantial medical debt and was uninsurable. It helped to hear survivors talk about their experiences in their own words. To hear them articulate it helped us understand the real struggles behind our data,” Jones says.

Interviews may also help explain why distress lingers even years after treatment ends.

A patient told us that, after lymphoma treatment, her doctor said that it would take two years to recover physically and mentally, and that almost all the gains would be in these two years,” Jones says. “She said something like, ‘I was really patient for two years, then after those two years passed, I didn’t feel any better and realized this is what I was going to be living with.'”

Distress detection and treatment is increasingly being seen as part of the standard of care for cancer patients and post-treatment survivors. For example, organizations like the National Comprehensive Cancer Network (NCCN) and the American College of Surgeons Commission on Cancer (ACS CoC) mandate distress screening and treatment in order to earn accreditation from these institutions.

Understanding which individuals are most likely to experience elevated distress,” for example young adult survivors who report fear of recurrence and financial strain due to cancer, “can be useful in targeting interventions to potential participants,” Jones says.

Jones et al. Understanding Distress in Post-Treatment Adult Leukemia and Lymphoma Survivors: A Lifespan Perspective. J Psycho Oncol. 2015; DOI:10.1080/07347332.2014.1002658 [Abstract]

Jones et al. Prevalence and Predictors of Distress in Post-Treatment Adult Leukemia and Lymphoma Survivors. J Psycho Oncol. 2015; DOI:10.1080/07347332.2014.992085 [Abstract]