Dr. Wu and her research team have a shared goal of improving outcomes for children, adolescents, young adults who are affected by cancer, as well as for their families. The types of outcomes we want to improve are cancer-related survival, maintenance of cancer remission, prevention of cancer, quality of life, and psychological outcomes. Our work focuses on improving these outcomes by designing and testing ways to improve people’s adherence to medical recommendations and regimens (that is, whether what they do is consistent with their medical provider’s advice) and self-management of their health.
We recognize that there are a number of factors that affect adherence and self-management in pediatric populations. Drawing on Bronfenbrenner’s Socioecological Model, we conduct observational studies to investigate factors impacting adherence on multiple levels, including the individual child, family, peer, school, healthcare provider, cultural, and policy levels. For example, a child’s psychological functioning (such as their level of anxiety), a parent’s knowledge about the child’s medical condition, and how a healthcare provider explains the regimen can all affect adherence.
We use this understanding of the socioecological factors impacting adherence and self-management to inform our development of behavioral interventions for improving adherence in children and families. These behavioral interventions typically target the individual child or adolescent, their family members, and healthcare providers. We also strive to incorporate family preferences into our intervention design so that we can improve the acceptability and effectiveness of our programs. One of the ultimate goals of our research is to create sustainable intervention programs that can be effectively disseminated into clinical settings and the larger population. For example, we are interested in testing ways of incorporating multidisciplinary healthcare providers into delivery of adherence promotion interventions.
We see our observational, intervention, and dissemination work as mutually informing one another. For example, our observational work informs how we design our interventions and think about disseminating the interventions, our intervention testing informs our dissemination strategies, and dissemination itself raises new factors impacting adherence that need to be examined in observational work.
The team is conducting work on adherence across the cancer control continuum – from cancer prevention, to cancer treatment, to cancer survivorship. Currently, our studies include children and families at high risk for melanoma, adolescents and young adults who have cancer, and young adult cancer survivors. Adherence to medical recommendations is a critical issue across these populations:
For all of these groups, how well patients are able to adhere to medical recommendations greatly impacts their health outcomes. Thus, our team is working to find ways to improve adherence and better support youths and their families in managing cancer-related health recommendations.
Children, adolescents, and young adults are unique groups of individuals, which require special care and consideration in both research and clinical care. Across childhood, adolescence, and young adulthood, there are many developmental changes and tasks that individuals encounter. Adding a chronic health condition, such as cancer, on top of these developmental tasks often is an extra burden for youths and their families. For instance, families must learn to integrate a child’s medical regimen into their already busy lives. As another example, adolescents who have cancer and their caregivers may struggle with balancing the adolescent’s need for independence with the medical need of closely monitoring their medication adherence and symptoms. Youths are also an exciting group to work with because changes made early on life have the potential to have lifelong impacts on their behaviors and health outcomes.
In the area of cancer prevention, we have an incredible opportunity to help children establish good habits early on so that we minimize their risk of developing cancer. One example of this is using personalized medicine approaches that combines genetic testing for cancer with education and behavioral interventions to improve children’s and families’ adherence to cancer prevention behaviors. For children who have cancer, as pediatric cancer treatments have become increasingly effective and also ambulatory-based, there has been growing interest in finding ways to improve adherence to cancer medications. By improving adherence to cancer medications, we may be able to improve survival and conserve healthcare costs. Adolescent and young adult (A/YA) survivors of cancer have also emerged as an important group on which to focus. This group has not enjoyed the same improvements in survival that other age groups have achieved in recent years, and there are many barriers to their follow-up with healthcare providers after surviving cancer. Such follow-up care is essential for monitoring for late effects of cancer treatment, cancer recurrence, and onset of secondary cancers. Our team has studies in all these areas (see below for a brief summary of some of our current studies).
SUN in Schools Program (Skin-cancer Understanding)
The overall goal of SUN is to promote school-based efforts focused on skin cancer prevention. We have designed an interactive educational program on skin cancer prevention to be delivered in Utah high schools. Prevention of skin cancer is critical during the childhood and teenage years because sun exposure and occurrence of severe sunburns early in life are key risk factors for skin cancer.
FLARE Study (Family Lifestyles, Actions, and Risk Education)
FLARE aims to make it easier for children and their families who have a higher risk of melanoma to take action and protect themselves. The goal of the FLARE study is to test the feasibility and acceptability of a family-focused behavioral intervention designed to improve adherence to sun protection (e.g., sunscreen use) and screening (e.g., skin self-exams) behaviors.
Project MERIT (Melanoma Education and Risk Information Team)
The purpose of Project MERIT is to create and test new educational materials that provide information about melanoma risk and prevention to children and their families. The educational materials include information about genes, inheritance, DNA mutation mechanisms, genetic and environmental melanoma risks and melanoma preventive behaviors.