Neurocognitive Assessments within COG: An Intensive, Integrated Model for Successfully Evaluating Children with High-Risk ALL
Co-Investigators: Leanne Embry, PhD, University of Texas Health Science Center and Robert Noll, PhD, University of Pittsburgh
Children with “high-risk” leukemia receive intense treatments that, while life-saving, can also cause them to develop problems with the way they learn and think. This does not happen to all children receiving these treatments, but we cannot yet predict who will develop problems. One reason that we lack this information is that it is often difficult to test changes in the way children learn while they are receiving medical treatment. Children may feel too sick to complete testing, psychologists are not always available to do the evaluations, and insurance companies may not cover the testing that is needed.
In this project, we aim to identify the first signs of changes in thinking and learning using a short, computerized testing program. The tests can be given in clinic by nurses or other staff, and cost very little money. We will test children starting shortly after leukemia is diagnosed, and several times during the course of their treatment, so that we can identify problems as soon as they start to occur. Children in our study will also receive 3 one-hour evaluations with widely-used tests of learning and memory, given by a psychologist, over a 5-year period. We will determine whether results from the computerized tests are able to predict performance on the more traditional tests given by the psychologists. If computerized testing done early in treatment helps us to better predict who will go on to have difficulties, we can help to slow down or eliminate these problems by offering early interventions at the first sign of difficulty.
Project Update (February 2016)
Dr. Hardy answered some questions about the progress of her research.
What have you found so far?
In the study so far, nearly 300 children diagnosed with high-risk ALL have completed the computerized testing program at least once, which is over 90% of the children who have volunteered to participate in the project. Even though many children on the study have not yet finished treatment, the vast majority of them are continuing to do the computerized testing every six months or so as they complete their chemotherapy. The first thing that we’re learning, then, is that this kind of computer testing can be done in busy pediatric oncology programs without overburdening the staff, parents, or kids. While this does not sound like much, it is the first essential step. We won’t use statistics to look for patterns in the test results until later in the study, but we feel very optimistic that the data we’re collecting will help us pinpoint the earliest changes in thinking and learning as they develop for some children during treatment.
What did your research grant make possible?
The research grant has allowed us to support the participation of over 150 hospitals in the study. We have been able to make the computer program available to staff at these hospitals located in the United States, Canada, Australia, and New Zealand. With support for the study team, we have also been able to train over 500 nurses, doctors, and other clinic staff in how to use the computer program to test kids on the study, and to provide these sites with the resources and materials they need for psychologists to complete the more traditional tests with children.
What has surprised you about your research, or what have you found most interesting?
In our study, we are asking children to complete a short, computerized test at several time points during their cancer treatment. In our experience as psychologists, we have seen children who are able to think, learn, and play normally on most days during their treatment. Still, we worried that some children might feel unwell on the days that they did the computerized testing. So, we decided to ask children how they are feeling right before they do the testing, so that we could compare test results for kids who said they felt tired, sick, or in pain to those who didn’t have any of those symptoms. When we looked at this information so far, what we saw was a bit surprising. The vast majority of children are reporting no pain or nausea during the earliest part of their treatment. This was reassuring, because it tells us that doctors and nurses are likely paying attention to these symptoms and making sure that children are comfortable. However, many children are reporting that they feel tired – and not just early in treatment, but at all times that we are assessing them during their treatment, and even after treatment ends. Because of this, we will be looking more closely at whether or not feeling tired is related to children’s scores on the computerized tests and on the tests that psychologists administer, especially when the same children are reporting that they feel tired on different testing days.
Where do you go from here – what are your next steps?
The research grant provided by ALSF has allowed us to launch one of the largest studies of thinking and learning in children with high-risk ALL that has ever been done. Our plan is to use the results of this study to identify children at the highest risk of problems later on, and then to design an intervention to prevent those problems at the earliest possible time. So, our next study will be to provide early treatment to children who appear at risk to see if early intervention can help survivors of high-risk ALL to achieve their full potential.
"The funding provided by ALSF offers us a unique opportunity to combine and compare outcomes from a computerized assessment tool with those from more traditional assessment measures. Our goals are to detect cognitive problems as they emerge, track changes in functioning over time, and better inform future therapeutic trials about the acute and long-term cognitive impact of treatment." -Leanne Embry, PhD