Challenge

Annually, more than one million adolescents and young adults (AYAs) are diagnosed with cancer across the globe, resulting in four hundred thousand AYAs losing their life to cancer each year. Of these one million, eighty-nine thousand AYAs are diagnosed in the United States. This number has been steadily rising over the past several decades while AYAs continue to be known as the ‘in-between’ population (National Cancer Institute, 2020). With this being said, AYAs are typically labeled as a pediatric or adult patient during treatments due to the lack of specialized in-between oncology resources.

AYA cancer types are different from their adjacent populations due to their body’s biology during the time of diagnosis. AYAs can have a different reaction to treatments and medication doses because of their hormone levels, metabolisms, or brain development. These factors are severely understudied and can affect diagnosis trends and the chance of survivorship (Waizer, 2018). Furthermore, most clinical trials end at age eighteen or start again at age forty- completely leaving out the AYA population. In addition, AYA patients were not considered to be a specific oncology population that should receive government funding for research until 2017 (Waizer, 2018). This delay in research underscores the medical hurdles that this population has to overcome to receive adequate care. 

AYA Incidence and Mortality Statistics

At a patient level, AYAs are at an extreme risk of delayed diagnosis due to being left of potentially life-saving screenings that can detect the most common and deadliest AYA cancers. On top of this, AYAs are the most uninsured age group in the US, heightening the chances of patients deferring treatments and follow-up care due to financial instabilities. 

However, when a patient is diagnosed, they have psychosocial needs that differ from other age groups and can influence their overall health and recovery. Currently, AYA patients are treated with young children, or elderly adults and rarely with peers their own age. Designing dedicated spaces that cater to AYAs should incorporate spaces for social interaction (Zebrack et al., 2022), privacy. Activities relevant to their age-group (Quinn et al., 2023) can reduce the feelings of loneliness and anxiety (Linder and Seitz, 2016), enhance their treatment experience and support a patients goals for reintegration into normal life post-treatment.  While existing studies highlight the importance of AYA-specific resources and opportunities for social support, they reveal inadequacies in the current built environment for AYA cancer patients (Peditto et al., 2020). 

Psychosocial and Psychological Milestones by Age Group

Aim

This study examines AYA oncology inpatient units to understand how the built environment can support AYAs and their loved ones and enhance their experience throughout their stay in inpatient units. 

What We Did

We conducted an extensive review of the literature, case study analyses, interviews with subject matter experts, and a functional performance evaluation of an existing AYA unit in operation since 2016. The research highlights the need to create dedicated oncology spaces with specific spatial considerations that prioritize the psychosocial well-being of these patients and their loved ones and outlines strategies to create an environment that enables staff to provide optimal care to this vulnerable population.

Outline of Research

What We Found

Since 1990, several AYA activist organizations have strived to give their AYA population a voice in cancer care, leading to the development of five varying models of specialized medical care for AYA patients. The broadest care model includes facilities that adhere to medical guidelines for their patient population, and the more comprehensive models of care such as Youth Cancer Centres and AYA inpatient units provide environments that support socialization between patients and families. In addition, they provide amenities that encourage a sense of normalcy and lessen the burden of travel to care with sleeping accommodations. Unfortunately, these care models are nearly nonexistent with less than ten countries providing dedicated AYA units around the world. Furthermore, there are only three AYA inpatient units in the US, so less than 1% of AYA patients will be treated in an environment that supports their holistic health. 

Models of AYA Care Across the World

After analyzing case studies of comprehensive dedicated AYA environments, we determined that the Sony Foundation Australia’s ‘You Can Center’, Camperdown stands out from other facilities worldwide due the organizations commitment to ease the burden of youth cancer with age-appropriate spaces and amenities. A subject matter expert discussion with a manager at The Sony Foundation revealed the positive impacts of the non-clinical environment and how their space supports user interaction and strengthens a patient sense of normalcy. 

“Before You Can Centres, patients rarely saw others their own age during treatments, now patients, families, and friends can meet each other in these spaces and form a support network. Some patients and families even host pizza nights together on Fridays.”

Communications Manager at the Sony Foundation  

Lastly, the Functional Performance Evaluation of the Fort Worth Adolescents and Young Adult Oncology Coalition (FWAYAOC) at Baylor Scott and White All Saints Medical Center analyzed how the unit is currently functioning using behavior mapping, nurse shadowing, staff surveys, and user interviews. These findings emphasized the importance of designing the unit with an AYA patient panel to successfully understand how the built environment can adjust to fit their specific medical and psychosocial needs. 

“The Murphy beds are great and allow visitors to stay overnight with the patients. More times than not there is a visitor sleeping on the bed. I have even seen siblings share the bed and have a parent sleep in the recliner.”

Oncology RN at Baylor Scott and White All Saints Medical Center 

What These Findings Mean

By creating dedicated AYA units, patients can receive the holistic care that they deserve. This in-depth research study led to the development of nuanced design guidelines that should be considered when designing or renovating an AYA unit. These guidelines aim at providing a clear direction to designers, organizations, and health facilities on how the built environment can be more inclusive of this underrepresented population.