# Piloting a Patient-Driven Online Survey to Better Understand Cancer in Adolescents and Young Adults (AYA) in the United States

## TL;DR

A patient-driven online survey was piloted to understand cancer experiences among adolescents and young adults in the U.S.

## Contribution

The study introduces a feasible and effective online survey method for gathering insights from AYA cancer patients and survivors.

## Key findings

- A 28-item online survey was successfully completed by 76% of registered AYA cancer patients and survivors.
- The survey covered demographics, treatment, clinical trials, and socioeconomic impacts.
- The approach proved feasible for engaging this unique patient population.

## Abstract

Adolescents and young adults (AYAs) with cancer are a unique patient population in oncology. An opt-in, secure online survey was conducted among a general population of AYA patients and survivors to better understand the current landscape of AYA cancer. A 28-item online survey was designed for cancer patients and survivors diagnosed between the ages of 18 and 39 years. It comprised questions about demographics, treatment site, clinical trial involvement, support services available, and impact on employment, schooling, and finances. A total of 590 patients registered and 447 (76%) completed the survey. This online exercise was found to be feasible and can serve as an effective method to survey the AYA cancer population.