Why was this study done?
We wanted to find out if survivors were having problems five or more years after treatment for acute lymphoblastic leukemia (ALL). The survivors in this study had been in the Total 15 (TOTXV) clinical trial. We looked at neurocognitive problems (the ability to concentrate, remember things, process information, learn, speak and understand). We also looked at behavioral issues (attention deficit or hyperactivity disorder) and other problems such as depression and anxiety. We also wanted to learn how caregivers were affected by the stresses of caring for a child with a life-threatening illness.
The study’s main goals were to find out:
- How the survivor developed after cancer and therapy
- How cancer affects the way a family unit may function
- The number of parents or caregivers who suffer symptoms of depression or anxiety
- The difficulties parents or caregivers face while caring for a child with a life-threatening illness
- How energy levels may be affected in survivors who received ALL treatment
- How survivors’ sleep habits could be affected
When was this study done?
The study opened in February 2010 and closed in December 2014.
What did the study consist of?
- Caregivers answered questions about the stresses of caring for an ALL survivor.
- Survivors completed neurocognitive testing and a brain MRI.
What did we learn from this study?
Survivors in this study were at higher risk for long-term neurocognitive and behavioral problems than the general population. The ALL survivors were more likely to have problems with memory span, processing speed and executive function (mental flexibility, fluency and planning).
Patients who had leukoencephalopathy during treatment were at even higher risk of problems. This disorder damages the brain's white matter. White matter consists of nerve fibers covered by myelin. Damage to white matter can make it harder for different areas of the brain to work with one another. Survivors with the executive function problems also had areas of their brain that were not working efficiently. These brain areas seemed to be underdeveloped.
What are the next research steps as a result of this study?
We have already started another study to stimulate the underdeveloped brain areas to find out if they will work together more efficiently and if this leads to improved neurocognitive function.
How does this study affect my child?
Every childhood cancer survivor should receive long-term follow-up care. Through the St. Jude After Completion of Therapy clinic, your child will receive information and guidance for care after treatment.
Please speak with your St. Jude doctor about specific guidelines that apply to your child.
For more information
Please talk with your child’s St. Jude doctor about questions or concerns you have as a result of this study.
Publication generated from this study:
Leukoencephalopathy and long-term neurobehavioural, neurocognitive, and brain imaging outcomes in survivors of childhood acute lymphoblastic leukaemia treated with chemotherapy: a longitudinal analysis. Cheung YT, Sabin ND, Reddick WE, Bhojwani D, Liu W, Brinkman TM, Glass JO, Hwang SN, Srivastava D, Pui CH, Robison LL, Hudson MM, Krull KR. Lancet Haematol. 2016 Oct;3(10):e456-e466.
https://www.ncbi.nlm.nih.gov/pubmed/27658980