What is the LiveSTRONG Young Adult Alliance?

Monday, October 15, 2012
By, Kelli Craddock
Each year, nearly 70,000 young adults between the ages of 15 and 39 are diagnosed with cancer. In contrast to those younger and older, survival rates for young adults have not increased since 1975, possibly due to factors such as lack of insurance, less participation in clinical trials and delayed diagnoses.

In addition, young survivors often are caught between the worlds of pediatric and adult oncology.  They may face a variety of unique long-term effects that will need to be addressed over their lifetimes, such as: re-entry into school or the workforce, insurance coverage issues, infertility as a result of treatment, neurocognitive effects or secondary malignancies.

 

WHO WE ARE:

The LIVESTRONGTM Young Adult Alliance (the “Alliance”) is a coalition of over 160 organizations (medical institutions, non-profit organizations and government agencies) with the goal to improve the survival rates and quality of life for young adults with cancer between the ages of 15 and 40.

 

WHAT WE DO:

 

In 2006, LIVESTRONG joined with the National Cancer Institute (NCI) to conduct a Progress Review Group (PRG) to address the special research and cancer care needs of the AYA (adolescents and young adults) population and solicit recommendations for a national agenda to improve cancer prevention, early detection, diagnosis, treatment (including survivorship care), and outcomes among these patients (AYAO PRG, 2006). The PRG identified five recommendations for improving the outcomes of adolescents and young adults with cancer.

1.     Identify the characteristics that distinguish the unique cancer burden in the AYA oncology patient.

2.     Provide education, training, and communication to improve awareness, prevention, access, and quality cancer care for AYAs.

3.     Create the tools to study the AYA cancer problem.

4.     Ensure excellence in service delivery across the cancer control continuum (i.e., prevention, screening, diagnosis, treatment, survivorship, and end of life).

5.     Strengthen and promote advocacy and support of the AYA cancer patient.

 

RECENTLY:

In 2010, the Standards of Care Task Force published two papers in the Journal of Clinical Oncology:

1.     Adolescent and Young Adult Oncology Training for Health Professionals: A Position Statement

2.     Quality Cancer Care for Adolescents and Young Adults: A Position Statement

An awareness campaign, BREAK CANCER was launched in November 2010 to raise awareness about young adults and cancer by creating and breaking world records. By the end of 2010, dozens of records had been set and we expect the campaign to gain more momentum in the coming months/year.

Through the Research Task Force, a cohort study was funded in three institutions to learn more about the effects of cancer and its treatment on the adolescent and young adult population. With the information gained from this study, it is hoped that interventions can be designed and used to improve the quality of life during and after treatment, and the survival of adolescents and young adults with cancer.

The Research Task Force also looked at the current availability of clinical trials for young adults compared to the incidence rates of cancer diagnosis in that population to identify the gap between available trials and diagnosis.

 

COMING IN 2011:

LSYAA Annual Conference – November 9-11, 2011 will mark the 5th anniversary of the LSYAA where advocacy organizations join with medical groups to discuss recent and relevant issues for young adults with cancer.  The Conference is a 3-day affair in Austin, Texas with keynote speakers, interactive break-outs, and an extensive poster session to promote coordination and communication among current and future members.

Podcasts Series: Young Adults with Cancer – Shared through the experiences and insight of adolescent and young adult cancer survivors, each video in the series addresses the unique needs of young adults with cancer.

Brochures – The Living After Cancer Treatment brochure series is an introduction to survivorship that is culturally relevant, user-friendly, and easy to read.

My Planet – My Planet is the social networking site created by Planet Cancer to help adolescents and young adults connect to one another and connect to information. My Planet is the world’s largest online community of young adults who have been affected by cancer.

Continuing Nursing Education – The Adolescent and Young Adult Cancer CNE focuses on the unique physical, emotional and practical needs of the 15—39 age group and will help address the special problems faced by this patient group that has historically been overlooked.  Check out LiveSTRONG at:  NOEPNurse.com

Continuing Medical Education – The American Society of Clinical Oncology (ASCO) Foundation and LIVESTRONG have collaborated to launch Focus Under Forty, an education curriculum for physicians designed to build awareness of and provide training to address the challenges of treating adolescent and young adult patients with cancer

Research Grants – In an effort to further understand the unique biology of AYA cancer, LIVESTRONG will continue to fund numerous research grants focused solely on AYA cancer. In 2008 and 2009, LIVESTRONG funded 14 research grants to study and analyze the biology of AYA tumors.

Cancer & Fertility – Through over 250 agreements with fertility centers and sperm banks across the country, newly diagnosed cancer patients whose treatment may compromise their fertility, can access discounts.

 

 

Kelli Craddock
Director, Young Adult Alliance
LIVESTRONG

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