Understanding and supporting cancer survivorship needs of children with Down syndrome in remission from leukemia and their families

PROJECT SUMMARY Children with Down syndrome (DS) are 56 times more likely to be diagnosed with leukemia compared to children without DS. More than 85% of all children diagnosed with cancer will survive more than 5 years but experience late effects from the cancer treatment impacting quality of life. In addition, children with DS have unique physical and psychosocial implications when reintegrating into meaningful activities. Caregivers play a critical role in advocating for their child and are essential to facilitate participation. However, the limited available reintegration research has primarily focused on children without DS, neglecting the unique social and health needs for daily participation and quality of life specific to those with intellectual and developmental disabilities. As the population of childhood cancer survivors grows, there is a critical need to move beyond describing the late effects of cancer in children with DS but to also support reintegration into daily activities in the home, school, and community environments to improve long-term developmental outcomes and quality of life for both the child and family. The goal of the F99 phase of my proposal is to understand the needs of children with DS and their families once in remission from leukemia. I will use a convergent mixed methods approach to understand the relationship between late effects of cancer (cognition, behavior, and health outcomes) in children with DS and mental health of the caregivers (n=15 family dyads) during reintegration experiences. The F99 phase will provide essential insight into the needs of children with DS and families to understand what the barriers and facilitators are to reengaging in meaningful activities once in remission. For the K00 phase of my proposal, I will develop and implement, in collaboration with stakeholders, an evidence-based and family-centered intervention toolkit, to support childhood cancer survivors, tailored to children with DS. Aim 2 will use a community-engaged approach to develop an intervention toolkit to support reintegration for children with DS and their families after leukemia back into meaningful home, school, and community activities. The intervention will be piloted on 15 families to evaluate acceptability and effectiveness using goal attainment scaling to allow families to prioritize family- centered individualized goals. The fellowship development plan will provide additional training in eight areas; a) understanding of DS and cancer survivorship; b) assessments of cognition, adaptive behavior, and health outcomes; c) qualitative analysis, d) mixed methods analysis, e) stakeholder engagement and community-based participatory research, f) mentorship and professional development; g) scientific writing and dissemination, and e) responsible conduct of research. My ultimate goal is to become a tenured professor and run an independent externally funded research lab that includes family and community partners to address the unique reintegration needs among leukemia survivors in children with Down syndrome and their families.