Colorado University. US: 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.
–
This research was supported in part by NCI 5K07CA108565, PI: Parry