Kristin Marr

Patient Engagement in Development of a Pediatric, Adolescent and Young Adult (PAYA) Cancer Research and Survivorship Program

Pediatric, adolescent and young adult cancer survivors are a distinct population with varying access to research participation, fragmented care, high losses to follow-up and absence of a survivorship program for those diagnosed =18y in British Columbia, Canada. There is clear evidence in the literature of reduced health and psychosocial outcomes, including higher morbidity and mortality, and lower academic and employment attainment, after cancer treatment for PAYA. PAYA survivors overall have longer future potential life years in which it remains critical to optimize health outcomes and quality of life. We aim to create a multi-disciplinary clinical and research team together with people with lived experience (PWLE) to create an inclusive, equitable and accessible program. Research participation would be offered to all PAYA survivors in our new, integrated clinical and research program which will include prospective biobanking, correlative biology and genomic research aims, psychosocial research projects and participation in relevant survivorship clinical trials.

Pediatric Oncology Lifestyle Intervention Program in Childhood Cancer Survivors at Risk of Metabolic Syndrome after Treatment

More than 85% of children with cancer will now become long-term survivors. Unfortunately, the intensive treatment that is used to achieve cure comes with a risk of developing health issues later in life including heart disease, diabetes, high blood pressure and high cholesterol (together known as MetS). Often, these issues don’t develop until more than a decade after they finish treatment and this gives us an opportunity to prevent onset of the condition or improve their health in other ways, including involvement in regular exercise and healthy lifestyle routines. We want to develop a program that will encourage children to be more active and have healthy routines. Mobile applications have been developed, including the Live 5-2-1-0 initiative to help patients and families identify areas to improve their routines, but patients may need more intensive intervention to motivate them to change. We are proposing to try 2 different types of interventions in childhood survivors of cancer between ages 8-16 years over the course of a year to see if the programs encourage a change in their attitude towards physical activity. Over the course of the study, we will measure their attitude towards physical activity, their level of exercise using fitness trackers, as well as some markers of health. We will be additionally evaluating novel strategies for prediction and diagnosis of metabolic disorder, with collaboration with ongoing research into new metabolomic biomarker panels and predictive genetic polymorphism analysis. If this program is successful, we hope to create a free and easily accessible program at our centre that will encourage all childhood cancer survivors in our care to develop healthy routines that could be sustained through their life.

Evaluation of an innovative, culturally responsive, and equitable mixed model of care for survivors of childhood cancer in British Columbia, Canada

In British Columbia, Canada, care of pediatric cancer survivors is coordinated by a specialized Pediatric Oncology Long-term Follow-up (LTFU) program at BC Children’s Hospital. The program mandate is to provide individualized surveillance, education, and support for physical and mental health along with prevention of chronic health issues. As a provincial program that covers a large and diverse region, there are many geographic and sociocultural factors that impact access to care. Historically, provision of LTFU care has largely been face-to-face (F2F) visits at our centralized tertiary care pediatric hospital. In recent years, models of care have shifted to telehealth and outreach clinics to address the values and needs of patients. However, there are potential limitations to the appropriateness and effectiveness of new models, such as absence of physical assessments, and limited access to specialized services. Additionally, there may be bias in which populations preferentially use telehealth care, based on geographic, financial, and other sociocultural factors, which may lead to a disparity in care provided to vulnerable populations. This study uses patient-reported outcomes to evaluate the sociocultural context and experiences of survivors of pediatric cancer in the delivery of their care along with measures of adherence and health outcomes.

Grants

Co-Investigator. Prioritizing Steps to address oncofertility and supportive care needs with YAs identifying as men in BC. Funding Source: Michael Smith Foundation for Health Research – Convening And Collaboration Award

Co-Investigator. Culturally responsive care in survivors of childhood cancer. Funding Source: BCCHR Clinical & Translational Research Seed Grant

Co-Principal Investigator. Development of Oncofertility pathways and resources in BC. Funding Source: Canadian Partnership Against Cancer