Encyclopedia
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Subjects:
Oncology
Adolescents and young adults (AYAs) with cancer are distinct, both physically from a disease pathophysiology perspective and psychologically from a developmental perspective.
- AYA
- qualitative studies
- LGBTQ+
- psychosocial
- survivorship
1. Introduction
Adolescents and young adults (AYAs) with cancer are distinct, both physically from a disease pathophysiology perspective and psychologically from a developmental perspective [1]. Defined by the National Cancer Institute (NCI) as individuals between 15–39 years old, this diverse age group experiences a range of physiological changes and social transitions [1,2,3]. Navigating a cancer diagnosis during this stage disrupts nearly all aspects of life [3,4]. In addition, AYAs commonly face worse outcomes in cancer care, both with shorter survival and worse quality of life, compared with children and older adults [5,6]. Currently, age and diagnosis typically determine referral to pediatric or adult oncology, each with differing practices, procedures and service utilization, including psychosocial and supportive services. In general, AYA development is largely recognized as a multidimensional process, with physical, psychological, social and environmental changes. Few studies in psychosocial oncology capture the unique ways cancer treatment interacts with, disrupts and promotes these developmental processes during and after treatment [1,7,8]. This is due in large part to several factors, including: differences in the nature and behavior of AYA cancers; lower participation in clinical trials; varying treatment plans; and inconsistent use of supportive services, such as social work, fertility services, sexual health, physical and occupational therapy, pain and palliative care and rehabilitation medicine [9,10]. Systemically, non-uniform treatment paradigms in conjunction with differences in tumor biology and lower accrual to clinical trials in the AYA population have led to marginal improvements in overall survival over the last three decades compared to therapeutic improvements seen in younger and older patients [3,11,12,13,14,15].
As the holistic psychosocial perspectives and needs of AYAs are understudied and underrepresented, there is a critical need for greater patient-centered research that addresses the unique needs of AYAs, including: psychosocial care; quality of life; treatment adherence; decision-making; cognitive functioning; and emotional well-being [14,15,16,17,18,19,20,21,22,23,24].
2. Discussion
AYA patients with cancer are a distinct, vulnerable and underserved population in our current cancer care system [33,34]. As care is often siloed between care delivery systems with a pediatric- or medical-centric focus, the care AYAs receive is often dependent on the model they encounter, an arbitrary process dependent on any number of singular variables (e.g., age, cancer diagnosis, institutional referral patterns, etc.) [11]. Instead, the care of AYAs during cancer treatment and beyond should be guided by a multidisciplinary approach to treatment with an understanding of an individual’s biopsychosocial development [35]. Given the inherent complexity of an AYA’s developmental stage, this study focused on a more detailed understanding of the nuanced variables contributing to these situations and one’s lived experience. These focus groups build on prior literature and identify novel themes related to critical domains in the care of AYA cancer patients: social relationships and independence; uncertainty regarding the future; communication preferences; navigational and social needs and supports; and LGBTQ+ well-being and healthcare delivery. It also illuminates the importance of inclusivity in cancer care and its environment. While other studies have focused on only psychosocial or communication experiences, the themes identified in this analysis reflect a spectrum of unique concerns and clinically actionable recommendations.
While attention to these themes should be part of the standard of care approach to all AYAs, such a biopsychosocial approach is not routinely or systematically provided, often due to a lack of expertise or resources, both financial and non-financial. Thus, these themes both reflect and amplify AYA concerns and priorities and synthesize practical and effective ways to improve the outcomes of AYAs with cancer, at an institutional and system level.
An overarching motif is the burgeoning autonomy and desire for independence of AYAs, which has implications and recommendations for AYA patients, caregivers, providers and researchers. AYAs desire to have control over their cancer care—they wish to have access to all relevant care resources on their terms, but also the ability to shift and adjust their preferences, concerns or priorities [17,36]. They prefer to independently decide on whether, how and when to utilize any given resource [37]. Although they may accept, and even solicit, advice from experts and their social support systems, the ultimate decision must be left to them. This insight has valuable clinical implications for providers: utilizing both repeated standardized and open-ended questions is critical in fostering health literacy and a cancer care system that allows an AYA’s ongoing maturation throughout their cancer journey.
The cancer experience for AYAs is a particularly socially isolating experience [38]. The relationships that AYAs nurtured prior to their diagnosis invariably change, including the quantity, quality and type of relationships. This is due to modifications in many routine activities in an AYA’s life and a loss of independence in having to forego certain life experiences [1]. Many report a regression to caregiver reliance and place developmental milestones on hold. To blunt the effect of these changes, many AYAs seek in-person and virtual connections with their peers undergoing their own individual cancer experience who can best empathize with their losses. Expectedly, AYAs prefer these connections be made available to them but not mandated or overly structured. However, they still prefer that the cancer care team help arrange and navigate these connections, highlighting the personal trust placed on their care providers.
While life during active treatment is often regimented and focused solely on medical care, life post-treatment is often unpredictable. This leads to significant anxiety and discomfort for many AYAs, who describe feeling abandoned or losing the consistency provided by the healthcare system that permeated every aspect of their daily life during active treatment [39]. This untethering from the medical system is particularly evident in their experience of survivorship care and the uncertainty regarding potential long-term and late effects of cancer and/or treatment. Addressing these concerns earlier and throughout active treatment can better prepare AYAs for the future and navigation emotional uncertainty. Awareness of these possibilities allows them to mentally prepare for the chance that they may personally experience these sequelae and encourage them to be more proactive in connecting with their care team. Acknowledging that these conversations can be overwhelming, providers must engage with AYAs on these topics as they are ready and capable of doing so.
Patient outcomes may be influenced by an individual’s perception of successful communication of health information, and as found in this study, accommodating an individual and their support system’s communication preferences is vital to an AYA’s ability to process their cancer experience [40]. Communicating health information is particularly dynamic for AYAs, whose support systems may change and adapt to their developmental state (e.g., spousal vs. parental involvement and delegation of caregiver roles) [41]. Additionally, an AYA’s communication preferences often evolve, including how, when and where they prefer information delivered to them. Control over the discussion of sensitive topics (e.g., sexual health, fertility) is especially relevant for AYAs. Directly asking the AYA as to who should be involved and the most appropriate timing of these discussions empowers the AYA and builds confidence and rapport with their care team. This in turn fosters health literacy, leading to a more open and healthy relationship with the healthcare system and acquisition of critical self-advocacy skills.
Navigating healthcare proxy and caregiver discussions can be complicated for this age group. Recommended communication and care accommodations include allowing revision of who a healthcare proxy is during treatment or survivorship, allowing opportunities to update new relationships or circumstances with cultural sensitivity, especially for patients who identify as LGBTQ+.
Additionally, these focus groups elicited unique themes at the intersection of AYA and LGBTQ+ concerns and priorities, for which sparse literature exists [42]. Psychosocially, navigating cancer treatment while simultaneously developing one’s gender identity and sexuality can be overwhelming. Care teams must work towards minimizing heteronormative assumptions in communications, increasing flexibility and understanding of how identities can change over time, and appreciating the emotional burden of “coming out” repeatedly to providers [43,44]. Identified clinical recommendations include a need for standardized and inclusive screening and assessment of LGBTQ+ individuals, providing education on inclusive language and communication to providers and creating a safe and inclusive space for LGBTQ+ AYAs [45]. Indication of LGBTQ+ affirmation and allyship is important for LGBTQ+ AYAs as this can positively impact their psychosocial health and cancer experience.
Beyond communication and healthcare relationships, AYAs also identified aspects of hospital environments that should be considered and modified to foster a more inclusive atmosphere. This includes creating a more age-appropriate culture in the care teams and in the waiting rooms and physical locations for AYAs [46].
As the themes above demonstrate, AYA maturity level, needs and preferences vary. Therefore, specific logistical, navigational and informational assessments and resources are critical in supporting an AYA through their cancer experience. Personalized AYA screening tools to measure stress and distress, capture educational and/or vocational needs, assess financial toxicity and understand support systems can provide avenues to alleviate these additional burdens. Resources and culturally sensitive support structures can then be tailored to meet the needs of the AYA where and when they are needed. Unfortunately, most current systems reactively respond to stressors as the etiology and evolution of these stressors is still largely unknown and unpredictable. By better discerning these variables, we can develop systems to proactively prevent and mitigate added stressors, significantly reducing physical and psychological distress and burden and improving the AYAs’ cancer experience.
This entry is adapted from the peer-reviewed paper 10.3390/cancers14030710
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