by Betty Roggenkamp, BFA, MSHC
Imagine being between the ages of 15 – 39 and hearing the three words “you have cancer.” It happens to approximately 90,000 people in the United States every year. Right when life can be quite busy learning to adult or taking on the world of grownup responsibilities, you get slammed with a very, very complicated, unexpected, and abrupt interruption to living life.
Cancer, possibly even health care, may not be on the radar of people diagnosed between 15 – 39 years of age. This specific population of people with cancer is known as Adolescent and Young Adult or in this acronym loving world…AYA. AYAs are separate from pediatric and adults with cancer and were realized as being their own unique population not all the long ago. It’s not an easy, in any way, population of people to treat from a cancer supportive care perspective. The vast spread of ages across multiple points in life AYAs find themselves living in, is extensively diverse. This spread can go from being in high school, working as a babysitter, and living with adults, to having a 40+ hour a week job, a mortgage payment, children, two dogs, and a goldfish to care for. How do cancer treatment teams offer support resources to the plethora of possible needs across this age range and life situations? And to add to this, many of these AYAs will live for decades beyond their diagnosis and will need a little extra support and guidance to live life to the fullest…going forward in a health system with multiple providers, changing health insurance networks, and electronic medical records that even in 2021, don’t often connect to each other.
Two things came together in 2020 that resulted in the rapid creation of tools and resources to address unmet AYA supportive care needs. #1: The Coleman Foundation, a Chicago-based philanthropic organization funding an AYA collaborative effort, and #2: COVID-19. The Coleman Foundation has funded the Coleman Supportive Oncology Collaborative (CSOC) since 2014. The CSOC started with the adult population, expanded to children with cancer in 2016, then initiated a focus on AYAs in January of 2019. The experiences creating tools and resources for older and younger people with cancer within the previous collaborative efforts were being implemented across several cancer treatment sites and community support organizations. COVID-19 though set a new stage in which to work in. The pandemic became the catalyst for telehealth and electronic communication’s exponential growth and acceptance in the field of healthcare. The time to act and act fast; to capitalize on the opportunity to create and develop tools and resources accessible via electronic means requiring no additional software or hardware. Big effort, low cost, hopefully, improved outcomes for all involved.
The CSOC AYA initiative includes clinicians, allied health team members, local community cancer support organizations, national AYA patient advocacies, and AYAs themselves. The effort is unique, thank you Coleman Foundation, bringing this many experienced experts across disease and support organizations together to think as one entity focusing on what the unmet supportive care needs are and how to address them. To think outside the silos and envision what could work in the hands of these digital natives. How can we quickly and effectively increase AYA knowledge of their diagnosis, its treatment, and the transitions between care, be aware of the role a primary care provider will play in their lives going forward, grasp the importance of a survivorship care plan, and also to provide improved access to support resources for all the added extra challenges cancer brings with it for life.
This collaborative effort was kicked off gathering in person to discuss and focus on the top unmet needs faced by AYAs across the collaborative’s Chicago participating sites of Advocate Aurora Health, Northwestern Medicine / Ann & Robert H. Lurie Children’s Hospital of Chicago, Rush University, and University of Chicago Medicine / Comer Children’s.
Areas of unmet need identified:
- Fertility Challenges – Provider and Patient Education.
- Understaffed Social Work:
- Transportation Issues.
- Financial Concerns.
- Legal Assistance.
- Insurance Navigation.
- Sexual Health: Function/Dysfunction, talking about it – Provider Education.
- Body Image – Provider and Patient Education.
- Cannabis – Provider and Patient Education.
- Supplements and Herbs – Provider and Patient Education.
- Transitions of Care – Provider and Patient Guides.
- Support Groups – Connecting AYAs to Other AYAs in an online-only world.
The collaborative set out to not only develop education pieces to address these needs but also created a patient engagement tool that easily delivers existing and collaborative created resources directly and concisely in a format AYAs can relate to and not be overwhelmed by. This tool empowers the patient by providing a self-efficacious means to support and information. According to Pew Research, in the US 95% of people in the AYA age range have smartphones. And they are attached to their phones. Always. Ok, near always. The tool we created works well on that small screen and allows the user to self-manage online access to multiple supportive/social care resources through the power and practicality of a portable document format. Fancy right? Not so much. It’s a pdf. Simple, easy to customize, uncomplicated to use, and painless to provide. It limits the Google rabbit hole of cancer searching providing credible resources at their fingertips. Literally. The resources are presented by the sequence of events AYAs navigate starting with the clinical care team and their contact information (including a primary care provider) then follows with support resources for “at diagnosis”, “at treatment” and then for “post-treatment”. The latter covers surveillance, living with cancer, survivorship, and metastatic/advanced disease. We like to think of it as a complete cancer menu of possible supportive care resources and information.
This patient engagement tool is still being developed. We are currently seeking the most important stakeholder input, that of the AYA and their people. The four collaborative cancer treatment sites are offering the tool through a pilot implementation. We are all looking forward to hearing how this works or doesn’t. How it can be improved upon before sharing with more of the 90,000 young people diagnosed each year.
If you would like to learn more about our work, you are invited to attend our Coleman Supportive Oncology Collaborative AYA Symposium for any provider who cares for AYAs. It is virtual and being held on May 7th & 14, June 18th & 25th, 12 – 2:15 CST. Day one, May 8th, is show-and-tell time for what we, the CSOC AYA developed and discovered. Agenda HERE, Registration HERE.
Betty Roggenkamp has over 12 years of experience in cancer care quality improvement as an independent contributor through multiple projects in the Chicagoland area. Betty is a facilitator and project manager for the Coleman Supportive Oncology Collaboratives (Adult, AYA, and Pediatric) and the Coleman 4R Patient Sequences project. She provides project coordination and management across multiple collaboratives, cancer care sites, and working teams. Responsibilities include facilitating working and site team efforts addressing unmet supportive needs, change management, tracking and dispensing information and communication between working teams, monitoring project progress, content creation, and development, invoicing / budget management, symposium production, and collaborative communication.
Betty Roggenkamp has facilitated cancer survivor workshops, patient advisory boards, and group discussions to generate areas of need in cancer care. She is also involved with several care initiation projects and cancer survivorship plan creation. Betty has Collaborative Institutional Training Initiative (CITI program) certification in human subjects research and is a member of the Diagnosis, Treatment, and Survivorship Working Group with the Illinois Department of Public Health’s Illinois Cancer Partnership Program.