Characterizing longitudinal experiences of financial toxicity in families of children with acute myeloid leukemia (AML)
SC-N184: FAMLI-AML
What is the goal of the study?
This prospective longitudinal study focuses on cancer-related financial challenges (financial toxicity) among families of children with AML. Financial toxicity is an important patient-centered outcome with associations among adults with quality of life, psychosocial wellbeing, and overall survival. Its impact in pediatric cancers is less characterized. The FAMLI-AML study is based at Children's Hospital of Philadelphia (CHOP) and includes several other relying sites. The study will recruit participants who are adult caregivers of patients less than 19 years of age at an initial AML diagnosis. Caregivers will be invited to complete a battery of patient-reported outcome (PRO) surveys at 4 longitudinal timepoints. Surveys include the COST measure, Financial Resources and Coping Survey, Work Arrangements Survey, Work Productivity Activity Impairment survey, and a household material hardship survey. These surveys should take ~20 minutes to complete altogether. Surveys will be administered at the following timepoints: (1) within 1 month of diagnosis, 3-6 months post diagnosis, 9-12 months, and then 21-24 months. Non-central study sites will be responsible for eligibility screening, recruitment, and baseline survey administration only?the central study site will manage all follow-up assessments, participant incentive disbursement, and analysis.
Who can participate in the study?
Please contact the study team listed below to learn more.