The St. Jude Lifetime Cohort Study (St. Jude LIFE) is starting a bold, new 5-year phase. Since it began in 2007, St. Jude LIFE has helped shed light on how childhood cancer treatment affects survivors as they age. This work has led to a better understanding of long-term side effects and improved care.
The new phase will focus on learning why these health problems happen and how to prevent or treat them. This work is supported by a new 5‑year grant from the National Cancer Institute. St. Jude LIFE also receives major support from ALSAC, the fundraising arm of St. Jude Children’s Research Hospital.
What St. Jude LIFE has learned
Because of St. Jude LIFE, researchers have:
- Built tools that share survivorship research data with the world
- Found that some survivors develop age-related health problems earlier than people who did not have childhood cancer
- Showed that income, education, and where survivors live affect health. Some survivors may need more support.
Focus for next 5 years
The study will build on this work and focus on:
- Brain health
- Muscle and physical function
- Heart and blood vessel health
- How where you live affects your health
Effects of newer therapies such as CAR T-cell treatment and proton therapy
For some, St. Jude LIFE visits will involve more detailed tests to learn more about the causes of childhood cancer survivors’ health problems. Once researchers know the causes, they can develop treatments or ways to prevent problems.
“This information will help us understand how treatment affects survivors’ long-term health,” says Melissa Hudson, MD, co‑principal investigator of St. Jude LIFE. “Our goal is to turn these insights into better care and outcomes for children.”
Brain health
About 40% (4 in 10) of childhood cancer survivors have problems with how their brain functions because of their treatment. In some cases, survivors may have more than 1 type of challenge.
Survivors may have challenges with:
- Memory
- Attention
- Thinking
- Responding
- Learning
- Solving problems
Many symptoms look the same on the surface but have different causes. For example, 2 people can both have memory trouble for different reasons.
“We want to know what's causing that level of memory problem at that time,” says Kevin Krull, PhD, St. Jude chair of Psychology and Biobehavioral Sciences. “We can treat memory problems in survivors, but there may be many different causes. If we use the same treatment for all problems, it is like putting a BAND-AID® on. It may work. It may not work. If we understand the cause of each problem, we can target treatments to those causes.”
Researchers will also look at ways to help survivors sleep better. Some survivors have sleep problems, like insomnia or trouble breathing at night. Sleep is important because it helps the body clear waste products out of the brain. If you do not sleep well, that waste can build up over time. This can affect how you think and remember.
“If we find sleep problems early, we can treat them before they harm brain health,” Krull says.
Muscle and physical function
St. Jude LIFE has shown that many survivors have long-term changes in their muscle strength and how their bodies work. Researchers want to learn when exercise, physical therapy, or other support may make the most difference. That may be during treatment, soon after, or even decades later.
“You have to have a body that functions well to live the life you want — at school, at work, in your relationships,” says Kiri Ness, PhD, co-principal investigator of St. Jude LIFE. “Our goal is to restore function, give people the support they need, or adapt their environment so they can have the best life possible.”
Heart and blood vessel health
Some survivors have a higher risk of heart and blood vessel disease. Tests for these types of problems are usually done in older adults. But cancer treatment can speed up aging in survivors. Survivors may benefit from having these tests at a younger age.
Doctors will do tests to learn which survivors may be at higher risk for heart and blood vessel disease. If doctors find problems earlier, they can treat them sooner.
Doctors have already seen this pattern in other areas. For example, young women who had chest radiation have a higher risk of breast cancer. This risk can show up as early as 8 to 10 years after treatment. These women need breast cancer screenings sooner than the general population.
Researchers want to know if the same idea applies to heart and blood vessel disease. Survivors who had higher risk treatments—like neck or chest radiation or certain chemotherapy drugs—may need earlier testing. The goal is to find the right time to start screening.
Impact of your environment
Researchers also want to understand how a survivor’s environment can affect their health. This includes where they live and work and their access to care, safe places to be active, social support, and healthy food.
Researchers plan to follow survivors over time to see how these things affect their health. Care providers can use this information to better understand survivors’ needs.
Long-term effects of newer therapies
Researchers also want to understand the long-term side effects of newer cancer treatments such as CAR T‑cell therapy, targeted antibodies, and proton therapy. These treatments can be powerful. But little is known about their long-term effects.
Some treatments can affect the immune system. When the immune system is weak, the risk of infections and some cancers can go up.
Proton therapy can target tumors more precisely and may expose healthy tissue to less radiation. But the difference may not always be large. Proton centers are costly and not available everywhere.
Thank you for being our partners
“This new grant will help us dive deeper into the biological, social, and psychological factors affecting survivors’ health,” says Robyn Partin, director of St. Jude LIFE.
Your time, effort, and ideas make this work possible. St. Jude LIFE participants are known worldwide for their dedication. Because of you, we can move toward personalized care — giving the right test and the right help to the right person at the right time.
Because of you, St. Jude LIFE is ready to make new discoveries that will help childhood cancer survivors everywhere.