AYA Patient Survivorship Program Created to Improve Quality of Life

AYA Patient Survivorship Program Created to Improve Quality of Life
AYA Patient Survivorship Program Created to Improve Quality of Life

SAN ANTONIO, Tex.—An adolescent-young adult patient survivorship program jointly designed by a cancer institute and a community organization was established to educate patients about their oncologic history and the effects of therapy, as well as to provide resources to improve quality of life, according to a presentation at the ONS 41st Annual Congress.1

“This is a distinct population with distinct diseases, challenges, and outcomes,” said Alicia Maston Coffin, MS, RN, OCN, Nurse Manager at the Wilmot Cancer Institute in Rochester, New York, who has been an oncology nurse for 9 years.

Adolescent and young adult (AYA) cancer survivors are a vulnerable population due to deficiencies in health-related knowledge and poor adherence to health promotion and screening practices. Their inferior outcomes and health care disparities can be attributed to their unique developmental challenges, as well as their distinct learning and communication styles.

“There is a growing consensus that this population needs more resources and more support from the medical community,” Coffin said.

Although current guidelines call for AYA cancer survivors to receive lifelong monitoring for long-term treatment effect, impaired health status, and premature death, a survey of young adult survivors showed that less than half received the recommended care.

Therefore, University of Rochester Wilmot Cancer Institute and 13Thirty Cancer Connect in Rochester, New York, partnered to develop an AYA program within the survivorship program using a patient navigation approach to promote health adherence and satisfaction by improving engagement in care and preparing them to advocate for themselves.

“The program includes an AYA navigator, a nonclinical position who assists the clinical team with survivorship planning and individual and group support, as well as coordinates age-appropriate financial, psychosocial, practical, and educational resources within the cancer institute and the community,” Coffin explained.

The AYA navigator also holds one-on-one meetings with the AYAs to improve their ability to proactively manage their cancer experiences by identifying and satisfying the unique needs of these patients and their families with the ultimate goal of improving patient satisfaction.

Since the program was implemented in Fall 2014, 90 AYA survivors have been enrolled, with approximately one-third involved in peer support programs at 13Thirty Cancer Connect. Participants have reported that they are highly satisfied with the program opportunities.

Ongoing evaluations will assess compliance with follow-up visits, patient surveys, focus groups, and monitoring satisfaction among cancer institute patients.

Although 13Thirty Cancer Connect is local community organization in Western New York, oncology nurses can access resources for AYA survivors on their website at 13thirty.org.


1. Coffin A, Marsh B, Spiker L, Lehman J. Adolescent–young adult patient survivorship program: a joint effort between a cancer institute and community organization. Oral presentation at: 2016 Oncology Nursing Society Annual Congress; April 28-May 1, 2016; San Antonio, TX.

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