CCSG Pilot: Addressing An Unmet Need: Anxiety And Quality Of Life In Caregivers Of Youth Affected By Inherited Cancer Syndromes

Scientific Abstract: Leveraging community input from the Cancer Predisposition Advisory Committee (CPAC), which was formed under the auspices of a Markey Cancer Center (MCC) Community-Engaged Partnership Planning Award, we are proposing a study that will inform iterative development of a psychological intervention for caregivers of survivors of childhood or adolescent and young adult (AYA) cancer. To do this, we will implement Phase I of the Obesity-Related Behavioral Intervention Trials (ORBIT) model, which has been adapted to a variety of chronic medical conditions, focusing on establishing the scientific foundation and identifying areas of psychosocial need. Utilizing a mixed methods sequential design, we plan to make use of the MCC Patient-Oriented and Population Sciences (POPS) Shared Resource Facility (SRF) to administer study surveys and conduct study interviews. Over a period of 12 months, we will first recruit 30 participants to complete validated measures of anxiety and QOL. We will then use purposive sampling (utilizing data from the quantitative measures) to invite 15 caregivers to participate in semi-structured interviews in which we will ask about the fears, challenges, and potential solutions to support caregivers of youth with ICSs. Our project was born from the suggestions of the CPAC which is composed primarily of caregivers of children/adolescents affected by an ICS from our clinic. This group identified gaps in knowledge regarding the psychological burden of ICSs upon their caretakers in our region, which draws from Central and Eastern Kentucky. The overarching goal is to better understand the psychosocial burden of ICSs to inform interventions to optimize patient care on a holistic level, supporting families and caregivers throughout their medical journey. In this project, we will continue community engagement through ongoing consultation with the CPAC. We will meet with the CPAC three times over the course of our project timeline, culminating in a half-day seminar and virtual workshop on cancer predisposition, anxiety, and quality of life (QOL) at the end of the year to disseminate findings to our stakeholders and public.