“In My Shoes” is a Critical Mass program that will enlist young adult cancer patients as empowered observers in real time, revealing gaps and obstacles experienced in their journeys through a cancer care system that is not in any way designed to meet their needs.
Young adults with cancer (defined by the NCI as 15-39 years old) exist in a no man’s land with no medical “home,” and thus are arbitrarily directed down either a pediatric or adult path, depending on—in no particular order—factors such as their age, their disease, their insurance status, and/or the referral patterns of their physician. While young adults traveling either path are certainly treated for their disease, key touchpoints and treatment decisions along that journey relative to their age and stage of life may be addressed inadequately or completely overlooked, which can contribute to a general feeling of disempowerment and/or less than optimal outcomes.
How it Works
Young adult patients will assess their personal journeys in real time as they pass through the cancer care system, guided by an evidence-informed worksheet where they will be able to observe whether key AYA touchpoints are addressed (or not).
The list of touchpoints may include (but aren’t limited to):
- Fertility preservation counseling, navigation and financial support
- Protocols implemented with long-term survivorship in mind (e.g. limb-sparing surgery, moving ovaries out of a radiation field, etc.)
- Genetic testing for mutations known to occur more often in young adults
- Internet access (for school, work and maintaining social fabric)
- Who is included in patient decision-making process (parents, significant others, roommates)
- Flexibility in scheduling around obligations such as work, school, children or care of aging parents
- Communication channels used by healthcare team
- Sexual health conversations
- Treatment decisions made in the context of school, work or family responsibilities
- Protocols and assessments validated in the young adult population
- Access to other young adult patients for peer support
- Hospital roommate selection
- Visiting hours for friends
- Financial support and advocacy
- …and even the types of magazines in the waiting room
Big or small, such touchpoints can send a powerful signal to the patient about how prepared a care delivery setting is to address their unique needs and issues as a young adult, both during the course of treatment and as they transition into survivorship.
The combined input from many patients will create a compelling firsthand picture of the young adult cancer journey through our current system in a variety of settings, producing new knowledge about gaps in service and unmet needs, and opening up an opportunity for dialogue to transform the way we treat and care for young adults with cancer.
How to Participate
The “In My Shoes” program pilot is currently in development. If you are interested in being an empowered young adult observer, send us your contact info, and we will keep you posted on our progress!