Access to Care Project: From Treatment to Survivorship

Stupid Cancer, in partnership with professional associations serving cancer patients, is leading a project to support providers serving AYA patients by developing support tools to address the unique needs and challenges of the patient community.

Learn more today!

Project Summary & Goals

Most AYAs are diagnosed and/or treated in community cancer centers with services geared towards older adults. With unique concerns and issues faced by AYAs, many needs are overlooked in their care, including, but not limited to, discussions around fertility preservation, sexual health, relationships, and education or career interruption.

The Access to Care Initiative seeks to understand where, along the continuum of care, gaps appear for AYAs and then identify what patients and providers need to better address these gaps and better serve patients. Through a series of focus groups, discussions, and surveys, with providers and patients, Stupid Cancer will pinpoint specific challenges providers face in addressing the aforementioned challenges. With community input, we will develop tools to further support discussions and interactions between providers and AYA patients with the goal of improving the patient experience. include goals here.

Partnerships

AYAs rely on the expertise of multidisciplinary providers including oncologists, nurses, social workers, pharmacists, and other support staff. Therefore, Stupid Cancer is partnering with professional associations to engage their broad memberships serving the cancer community. The goal is to have as many diverse experiences represented in the project to clearly outline the full healthcare experience.

Professional Partners include:

ONS, the Oncology Nursing Society, represents thousands of nurses committed to excellence in oncology care. ONS supports its members through evidence-based educational initiatives and a focus on the improving the quality of life for patients with cancer and their families. As nurses are on the front line of patient care, ONS is a great partner in promoting resources and education to this unique population.

APOS, the American Psychosocial Oncology Society, works to advance science and the practice of psychosocial oncology. Many of the challenges AYAs face are psychosocial in nature such as career and education disruption, social emotional relationship, and sexual health, to name a few. Working together with this professional group will help reach a critical element of the AYA care team.

AOSW, the Association of Oncology Social Work, is an international nonprofit organization dedicated to the enhancement of psychosocial services to people with cancer and their families. Social Workers are a critical element on the AYA care team and can provide unique insight in the experiences of patients and help identify resources to support their work.

HOPA, the Hematology Oncology Pharmacy Association, is a professional association supporting oncology pharmacy practitioners through education, networking and the advancement of professional opportunities to optimize care for oncology patients.

ASCO, the American Society of Clinical Oncology, is a membership organization serving nearly 45,00 oncology professionals. ASCO’s mission is to conquer cancer through research, education, and promotion of the highest quality, equitable patient care.

APHON, the Association of Pediatric Hermatology/Oncology Nurses, is a professional organization for pediatric hematology/oncology nurses and healthcare professionals. Its members are dedicated to promoting optimal nursing care for children, adolescents, and young adults with cancer and blood disorders, and their families.

Initiative Goals

This project seeks to understand where, along the continuum of care, gaps appear and then identify what patients and providers need to better address these gaps and better serve patients. Through a series of focus groups, discussions, and surveys, with providers and patients, Stupid Cancer will pin point specific challenges providers face in addressing the aforementioned challenges. With community input, we will develop tools to further support discussions and interactions between providers and AYA patients with the goal of improving the patient experience.

We plan on achieving our goals by:

  • Characterizing the healthcare experience for AYAs with cancer
  • Developing informational resources to help inform providers of the unique challenges of AYAs and opportunities to address them.
  • Providing AYA patients with the tools to advocate for themselves in the care setting
  • Curating and raising awareness for resources devoted to the AYA patient population with particular focus on tools to support marginalized communities.

If you're a healthcare provider, your participation will help us better serve the AYA community leading to improved outcomes for those facing cancer and those who care for them.

Special thanks to our sponsors for helping make this project possible.