Should cancer centers have a dedicated space for AYAs?

Yes.

Multiple surveys of AYA patients and several guidelines defining best practice have included an AYA-friendly or “age-appropriate” environment as an essential element of care. Although patients of all ages deserve healing health care environments, there are logical reasons for the preeminence of this aspect of care for AYAs compared with patients of other ages. A dedicated AYA space facilitates the achievement of the other key elements of age-appropriate care, as well.

Before diagnosis, the AYA was busy achieving developmental milestones, including work on autonomy, identity, values and interpersonal relationships. This cannot stop as we treat their disease, else we risk the AYA being defined by the “sick role;” therefore, we must provide their care in an environment that promotes normality, empowers the young person and recognizes individuality.

Peer interaction is a component of this normative process. An AYA space brings AYAs together with other patients their age, which is exceedingly difficult to achieve otherwise in a pediatric or adult facility, where the AYA is a minority. This increased social interaction decreases the distressing feeling of isolation and provides normalcy; the unit is akin to a “club,” dormitory common room or local coffee shop hangout. Mutually supportive relationships with cancer peers are one of the forms of psychological support most accepted by AYAs. An AYA unit also is more welcoming to the patient’s friends; a de-medicalized environment with a flexible visiting schedule, where playful social behavior is accepted and encouraged, increases the likelihood of visits.

An AYA unit encourages the AYA to continue to explore and express their individuality and autonomy to advance an adult self-concept. This can be achieved when there is opportunity to control their environment, including the choice of privacy or social interaction, and policies that allow some patient control (for example, the ability to sleep in later because labs and rounds are not as early). AYA spaces give opportunity for creative and artistic expression, with access to music, sports, age-appropriate books and movies, and Wi-Fi internet access. Providing this environment sends the message to the patient that we acknowledge they are unique and that we value their individuation journey.

Beyond the built environment, the other essential elements of AYA care are more likely to happen when there is an AYA unit. A bricks-and-mortar unit would not be sufficient if the staff did not create a culture and provide the support essential and unique to AYAs; such care is far more likely to happen consistently in an AYA-dedicated unit. Co-localization clusters patients with similar needs together, assisting providers in delivering these essential elements. For example, communication style is important to AYAs and is more likely to be age-appropriate if practiced throughout a unit rather than adjusted from room to room. Staff develops expertise, and best practice is reinforced by performing it regularly. It is much more efficient and logistically feasible to have one area and one staff for the purposes of training, policies and consistent care.

Is an AYA unit the only way to meet the needs of AYAs? No. Is it one of the most impactful and should it be a goal of best AYA care? Absolutely.

References:

Jones LJW, et al. J Adolesc Young Adult Oncol. 2017;doi:10.1089/jayao.2016.0011.

Lea S, et al. Adolesc Health Med Ther. 2018;doi:10.2147/AHMT.S182176.

Peditto, K, et al. J Envir Psych. 2020;doi:10.1016/j.jenvp.2020.101418.

Sawyer SM, et al. J Adolesc Health. 2014;doi:10.1016/j.jadohealth.2014.01.023.

Smith S. Eur J Oncol Nurs. 2004;doi:10.1016/S1462-3889(03)00057-7.

Karen H. Albritton, MD, is medical director of the AYA program in the Hematology and Oncology Center at Cook Children’s Hospital. She can be reached at Division of Hematology-Oncology, Cook Children’s Medical Center, 1500 Cooper St., 5th Floor, Fort Worth, TX 76104; email: karen.albritton@cookchildrens.org.

No.

Many assumptions are made about AYAs, but as an adolescent physician I have quickly learned how inspiring it is to look after AYA patients, who do not represent one homogenous group with the same interest but a group that is continuing to develop while being full of hope, enthusiasm and optimism for the future, even in difficult situations. Given the opportunity, AYA patients want to participate in health care decisions as flexibly as possible.

Like patients of all age groups, AYA patients expect health care decisions to be made by experts in the field and they want access to clinical trials appropriate to their tumor types. The AYA center may not be the center with tumor expertise, especially if the patient has a tumor seen more commonly in younger or older patients, and yet those patients still deserve access to these experts.

Although many will describe the need to be with patients of a similar age, AYAs also want to be able to stay close to home; preserve relationships with family and peers; and maintain school, vocational or work commitments as much as they can, without the additional financial burdens of traveling to an AYA center. They value the support the local community can provide both in terms of family and friendships, but also in terms of community health care that is commonly forgotten but can play a significant role in patients’ cancer care.

COVID-19 has fast-tracked many methods of improving access to AYA care and support without having access to dedicated AYA spaces in every cancer center. Telehealth capabilities have allowed collaborations between health care professionals, ensuring patients have access to tumor-specific and age-appropriate experts and across a variety of specialties. The same telehealth capabilities have allowed multidisciplinary teams to review pathology and radiology results and enroll patients onto clinical trials, as long as the trial center consents and reviews patients regularly. These capabilities also have strengthened patient care by providing AYA patients with opportunities for psychosocial support and peer interactions remotely.

Many people will talk about the support benefits of having AYAs with shared experiences coming together; however, it also is important to note that it can be extremely difficult for these patients to relive their experience and feel like they must support other AYA patients during difficult times.

AYA patients want stimulating environments in hospitals and although not every cancer center can compete with the AYA centers that have jukeboxes or pool tables, most of the stereotypes of AYA recreation habits — including access to broadband, TV and gaming — are freely available in cancer centers without dedicated spaces. Young people are confident using their gadgets to access streaming services and social media sites, and so it is feasible for them to use these devices to continue to connect with distractions from their illness, peer support, and health information and consultations. Patients have other interests that don’t require dedicated rooms, such as reading, crafting and playing musical instruments, and most cancer centers can accommodate these activities. Connection with peers requires more than just an AYA room, so it also is important to have opportunities for outpatient treatment or care in cancer centers closer to home to allow more regular visitation and important relationships to be maintained during these difficult times.

Ideally, although we might want AYA centers and dedicated rooms for AYAs in all cancer centers, it is important to consider the disadvantages that centralizing care may have on patients. It may increase travel time and costs and separate AYA patients from a community that can provide more benefit in difficult times than a stranger whose only connection is sharing the same age and disease.

Antoinette Anazodo, MD, PhD, is pediatric and adolescent oncologist at Sydney Children’s Hospital and Prince of Wales Hospital and director of The Sydney Youth Cancer Service. She can be reached at antoinette.anazodo@health.nsw.gov.au.