After surviving cancer, getting back into the rhythms of childhood or adolescence can be a challenge. From school, to a social life, to settling into independence, the impact of cancer often lingers beyond just the period of treatment, and it affects both the body and the brain.
At Children’s Hospital of Philadelphia, psychologist Matthew Hocking, PhD, leads a unique research program dedicated to improving the quality of life for children and young adults who have been diagnosed with brain tumors, solid tumors, or neurofibromatosis. Working with CHOP’s Cancer Center and Neuro-Oncology Program as well as a variety of diverse research centers at CHOP like the Center for Autism Research (CAR) and the Center for Data Driven Discovery in Biomedicine (D3b), Dr. Hocking and his team are discovering more and more about the different factors that contribute to the long-term, neurodevelopmental impact of the disease. One of these factors — as a recent study in Pediatric Blood & Cancer from the Hocking Lab illustrates — is something that many CHOP providers, including Dr. Hocking himself, have witnessed firsthand: The power of family.
“I’ve worked with a patient who had a craniopharyngioma, which is a tumor that’s usually addressed with surgery only, so there’s not a lot of in-depth, long-term treatments,” Dr. Hocking said. “However, (children who have completed treatment for craniopharyngioma) often wind up with a host of medical complications that families continue to manage throughout survivorship like increased hunger or hypothalamic obesity. Family therapy with this patient really helped with the management of all the medical demands and the emotional ups and downs that came after the tumor resection.”
Targeting the family system with problem-solving interventions could pay dividends in terms of a better quality of life for the survivor long-term, Dr. Hocking explained. We wanted to learn more about the relationship between family functioning and functional outcomes for cancer survivors, so we sat down with Dr. Hocking and asked him about his recent research.
What kinds of challenges do childhood cancer survivors face after treatment?
In general, kids who have had some sort of central nervous system (CNS) disease — whether it’s a brain tumor, leukemia, or patients who have a lot of therapy directed at the developing brain — also tend to have consistent problems that don’t develop until several years after diagnosis or after completing treatment. These problems fall into a few different domains. There’s neurocognitive functioning — problems with memory, processing speed, and attention and then somewhat relatedly, social functioning — they don’t have as many friends, they’re not as well liked by their peers, and they tend to be more rejected. And then there are long-term outcomes in terms of living independently, lower rates of marriage, and full-time employment. These challenges can be continually traced back to the consequences of their treatment but emerge in later childhood or early adulthood.
Keeping this in mind, tell us about the Hocking Research Program and its mission.
Our goal is to better understand the neurodevelopmental consequences of having survived childhood cancer, to identify those who are most at risk for poor outcomes, and to intervene in some way in order to improve quality of life.
I came to CHOP for a postdoctoral fellowship in 2009, with an interest in the neurocognitive, neurodevelopmental late effects of cancer, and I wanted to merge that research with some of the family-based research that was going on here. I got a fellowship award from the American Cancer Society to study the intersection between family functioning and neurocognitive late effects in long-term brain tumor survivors. From there, I received two grants from the National Institutes of Health that also examined the role of families and how they promote better health-related quality of life over time. Cancer is a disease that affects the whole family. As psychologists, we are uniquely positioned to work with the families to help them in terms of how they’re coping and processing, which will have downstream benefits on the kids with cancer themselves.
Tell us about your recent Pediatric Blood Cancer study into the impact of family functioning for cancer survivors.
We were interested in whether later survivor health-related quality of life can be predicted by how families get along and work together at the end of treatment. In this study, we enrolled kids who had just finished treatment for a brain tumor and assessed them at two different time points over a nine-month period. We measured family functioning (FF) as one of the main predictor variables — this includes communication, how well a family solves problems together, how well their feelings or emotional needs are met, etcetera. Both parents and survivors filled out validated questionnaires related to FF.
We also measured health-related quality of life (HRQL) from both parent and survivor perspectives using the Peds-QL, which measures quality of life in different domains and results in a total score. For example, one area is physical functioning, such as running, walking, or low energy levels; another area focuses on emotional questions such as feeling afraid, sad, or having trouble sleeping; then there are items related to social functioning, like getting along with other kids; and then those related to school functioning.
What did you discover?
We had hypothesized that the families who get along better or work together as a team would better support their children in their needs as they age past the end of treatment. And that’s basically what we found: Better family functioning at the end of tumor-directed treatment predicted higher HRQL 9 months later. This is clinically important because the end of pediatric cancer treatment can be a particularly stressful time for families as care is transitioned from medical teams to families. We were also interested in whether or not family functioning had any association with later neurocognitive functioning, but the findings there were a little more mixed.
What do your findings mean for cancer survivors and patients?
There are other factors at play besides medical variables that influence outcomes. This research shows that family functioning is an important variable that can affect quality of life — it’s not just the type of tumor, or the type of chemo that was given. And if we screen for families who are having trouble, not getting along, or not managing some of their child’s health demands, then we can then identify the families who are most at risk for poorer outcomes over time. We can provide resources or interventions to those who are having a harder time at different points throughout the cancer experience — whether that’s diagnosis, the middle of treatment, end of treatment — in order to promote better quality of life.
In addition to this research, you’re doing some exciting things with the Center for Autism Research to study the social functioning of brain tumor survivors. Can you describe that work a bit?
I’m fortunate to work within CHOP’s strong scientific community. We have a lot of resources that we can leverage for our cancer program, including the researchers at CAR and their methodology. Because the treatments that kids with brain tumors receive tend to affect later brain development, some brain tumor survivors’ deficits and difficulties are very similar to what you might see in youth with higher-functioning autism. They’re a little a bit aloof socially, they may act younger than their age, they may not understand social nuances, and they just tend to be isolated. They might be slower in terms of processing information or have some kind of physical impairment as a result of their tumor that impacts them socially. So, we wanted to apply some of CAR’s research protocols and paradigms to brain tumor survivors. We’re borrowing a bit from the field of developmental psychology and autism to study survivor social cognition — how people perceive social information, including facial affect recognition, and how they interpret other people’s perspectives or experiences.
We have recruited over 50 brain tumor survivors with about half of them undergoing a neuroimaging protocol. We are repeating some of the methodology that CAR has used to evaluate survivor social cognition abilities and compare them to typically developing controls and kids with autism. We’re trying to take a more scientific approach to break down some of these social deficits so that we can design interventions to improve survivor social functioning.
What would you like other clinicians to know about the work you’re doing?
There are a couple of things that I would like clinicians who encounter children treated for cancer to know. First, childhood cancer is a disease that affects the whole family. How the family adapts to the demands during and after cancer treatment is really important in influencing survivors’ quality of life. We can do more to support families throughout the cancer experience, and this will likely have long-term benefits. Second, children who have survived certain types of cancer often struggle with the cognitive and social consequences of their cancer and treatments that greatly impact overall functioning. Better understanding of survivor social information processing deficits and the contributors to these deficits can help guide remediation or prevention efforts and improve quality of life.
Learn more about the Hocking Research Program.