Adolescent and Young Adult (AYA) Patient and Family Advisory Council (PFAC)
Brief Overview
What is this council?
The AYA Patient and Family Advisory Council (PFAC) helps improve the care experience for adolescent and young adult cancer patients ages 15-39 years old and their families. Patients ages 18-39 years old with a Cancer diagnosis/in-treatment/survivorship, as well as parents, guardians, or caregivers of patients ages 15-17, are welcome to join the council.
This PFAC aims to increase patient autonomy to ensure our AYA patients feel seen and heard. We would like to utilize the meeting to give our AYAs an opportunity to share their experience at UCLA Health. By hearing from adolescent and young adult cancer patients ages 15-39 and their families, we aim to bridge gaps in care across this population.
Who is it for?
- Patients ages 18-39 with a Cancer diagnosis/in-treatment/survivorship
- Parents, guardians, or caregivers of patients ages 15-17 with a Cancer diagnosis/in-treatment/survivorship
- Staff members who provide care for AYA patients or program management
Why does it matter?
The importance of this PFAC is related to patient autonomy and ensuring this population feels seen/heard. We want to give this group of young patients an opportunity to be heard and share their experience at UCLA Health as an AYA. Additionally, we want to hear about experiences across adolescent and young adult care to ensure we can bridge gaps and aid transition between the populations.
Purpose and Mission
What is the PFAC trying to improve?
The PFAC would create two-way communication between the program/health system and AYA patients and their caregivers. A successful PFAC would allow patients and caregivers to work with staff to increase resources and program offerings based on patient needs.
What makes the AYA unique?
This patient group has a unique set of needs given the wide age range (15-39 years old). We hope this PFAC allows patients to learn how to navigate a health systems and their own health needs through clear communication, building trusting partnerships, and advocacy.
What the Council Does
Program development
- Identify patient/family education materials on inpatient and outpatient units and clinics
- Develop and distribute informational materials relating to AYA Program
- Create awareness and educational materials for patients/families/friends on AYA Program offerings and goals
- Enhancing the patient experience and supporting seamless transitions between inpatient and outpatient settings
- Strengthen identified community partnerships and improve overall patient experience for AYA population
Areas of Focus
Topics
The AYA program has several common topics that relate to patient care including but not limited to:
- Oncofertility
- Psychosocial support services
- Nutrition services
- Clinical trials
- Social work
- Programming for social support
Who Can Join
Eligibility
- Patients ages 18-39 with a cancer diagnosis/in-treatment/survivorship
- Parents or guardians of patients ages 15-17 with a cancer diagnosis/in-treatment/survivorship
- Caregivers of patients ages 15–17 with a cancer diagnosis/in-treatment/survivorship
- Staff members who provide care for AYA patients or program management
Commitment Expectations
- Two-year commitment
- Members must commit to attend bi-monthly meetings lasting approximately 1.5 hours
- Meeting times will be determined once recruitment is complete
- Meetings will vary and based on council preference may be hybrid or remote
Why Join?
What will be gained?
This medium of communication will allow the health system and program leadership to hear first hand expeiences from patients and their caregivers with the goal of improving program offerings and ensure patients are supported throughout their cancer care.
How to Apply
Contact Information
For questions or more information, please email [email protected].