Establishing an AYA program in a cancer center

AYAs with cancer do well in programs that are tailored to their age group, as we have seen with Teen Cancer America (TCA), the AYA advocacy program founded by Roger Daltrey and Pete Townshend of the lengendary British rock band The Who. Their involvement in teen cancer awareness began as honorary patrons of the Teenage Cancer Trust in the UK.3 There are 28 specialized patient hospital units in the UK National Health Service; these provide inpatient and outpatient facilities for young cancer patients ages 13 to 24 years.

TCA provides program recommendations and identifies experts to describe the program and advise how to incorporate such a program at other institutions. The goal of any of these specialized programs is to provide an age-appropriate, familiar, and friendly location where the patients and their families, physicians, oncology nurses, and other staff can provide comfortable treatment tailored to these young patients.


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Faculty members at Wake Forest School of Medicine in North Carolina sought to find out how other cancer institutions could establish such specialized care programs for their AYA patients. They recently reported that specialized AYA care provides improved outcomes, reduced unmet needs, and even led to greater enrollment in clinical trials.4 These programs often bridge the gap between pediatric and adult oncology with coordinated supportive services specific to this patient population.

How does one go about establishing a TCA AYA center? The Wake Forest group surveyed AYA advocates in 90 cancer programs in the United States. They chose to review formalized programs catering to AYA patients, where they interviewed oncology staff, nurses, patient navigators, and social workers. The goal was to create a comprehensive picture of AYA care across varied health systems.3

TCA programs and oncology care teams must create multidisciplinary environments — both physical and psychological — for patients who do not fall into either the pediatric or adult patient category. However, there are some constants. A focal point of any Teen Cancer America unit is the well-equipped teen lounge, meant to encourage patients to meet their peers, listen to music, and enjoy some relaxing time between treatments. The goal is for these young patients to live as normal a life as possible during and after treatment.

In the course of their research, the Wake Forest group interviewed leaders of oncology programs with and without specialized AYA programs. They found the program structures were quite varied despite the existence of guidelines.

Before any specialized program is implemented, the institution must conduct a thorough environmental site survey of available services and resources to identify strengths, gaps, and other areas of weakness. These must be addressed before moving on to establish AYA services. These programs include psychosocial, educational, and vocational support; information about fertility preservation; other support groups and patient events; as well as drives to encourage and increase clinical trial enrollment.

The first step in creating such a program is to place and fund the director; all else builds on that. After that initial step, programs are developed over time. Utilizing AYA-experienced staff is a plus. Start small, because cost will be a key barrier. Funds often come from foundations, philanthropic donors, and similar groups.

The Wake Forest group concluded by specifying that emerging guidance on AYA cancer care core elements must be matched with guidance supporting the implementation of specialized AYA care.

References

  1. Hess E, Anandan A, Osman F, Lee-Miller C, Parkes A. Disparities in treatment satisfaction and supportive care receipt for young adult oncology patients on the basis of residential location. JCO Oncol Pract. 2022;18(9):e1542-e1552. doi:10.1200/OP.21.00818
  2. US Department of Agriculture. Rural-urban continuum codes. USDA Economic Research Service website. Last updated December 10, 2020. Accessed November 9, 2022. https://www.ers.usda.gov/data-products/rural-urban-continuum-codes.aspx
  3. Kaplan BW. Support organization rocks age-appropriate cancer care for AYA patients. Oncol Nurse Advis. 2017;8(2):45-46.
  4. Haines E, Asad S, Lux L, et al. Guidance to support the implementation of specialized adolescent and young adult cancer care: a qualitative analysis of cancer programs. JCO Oncol Pract. 2022;18(9):e1513-e1521. doi:10.1200/OP.22.00063

This article originally appeared on Oncology Nurse Advisor