Around diagnosis, many young patients with breast cancer have low levels of knowledge about fertility issues. Further, low knowledge is associated with increased decisional conflict, which is likely to undermine the quality of decision making. These findings suggest that targeted and timely fertility information may reduce decisional conflict and increase informed choice. Neither relationship status nor firm plans regarding future children reliably predict desire to pursue fertility preservation.
Understanding the challenges AYAs face with regards to complex developing communicative and critical health literacy skills is crucial. Due to the paucity of research in this field, addressing health literacy across all AYAs will provide a valuable step in guiding research in AYAs with cancer.
A growing evidence base highlights the negative impact of poor psychosocial care at end-of-life. Adolescents and young adults (AYAs) 15-39 years of age with cancer face unique medical and psychosocial challenges that make them especially vulnerable when treatment is not successful. Although the importance of age-appropriate medical and psychosocial care is internationally recognized for AYAs across the cancer trajectory, there is little guidance on best-practice care and communication practices with AYAs as they approach the end-of-life. We conducted a narrative review and found evidence points to the potential benefits of introducing palliative care teams early in the care trajectory. Research undertaken to date emphasizes the importance of exploring AYAs' preferences around end-of-life issues in a repeated, consistent manner, and highlighted that AYAs may have strong preferences on a range of issues such as being able to stay in their own home, being comfortable and free from pain, and expressing their wishes to loved ones. We highlight a number of best-practice recommendations to guide clinicians around the critical elements of when, who, what, and how end-of-life conversations may be best facilitated with AYAs. Gaps in the evidence base remain, including research focusing on better understanding barriers and facilitators to timely, age-appropriate end-of-life communication for AYAs with different diagnoses, where discordance between AYA-parent preferences exists, and when AYAs die at home versus in hospital. We have proposed a new model to support clinicians and researchers to better conceptualize how interacting individual, familial, and sociocultural factors impact end-of-life communication with AYAs in clinical settings.
Medical providers are trained to investigate, diagnose, and treat cancer.
Their primary goal is to maximize the chances of curing the patient, with less
training provided on palliative care concepts and the unique developmental needs
inherent in this population. Early, systematic integration of palliative care
into standard oncology practice represents a valuable, imperative approach to
improving the overall cancer experience for adolescents and young adults (AYAs).
The importance of competent, confident, and compassionate providers for AYAs
warrants the development of effective educational strategies for teaching AYA
palliative care. Just as palliative care should be integrated early in the
disease trajectory of AYA patients, palliative care training should be
integrated early in professional development of trainees. As the AYA age
spectrum represents sequential transitions through developmental stages,
trainees experience changes in their learning needs during their progression
through sequential phases of training. This article reviews unique
epidemiologic, developmental, and psychosocial factors that make the provision
of palliative care especially challenging in AYAs. A conceptual framework is
provided for AYA palliative care education. Critical instructional strategies
including experiential learning, group didactic opportunity, shared learning
among care disciplines, bereaved family members as educators, and online
learning are reviewed. Educational issues for provider training are addressed
from the perspective of the trainer, trainee, and AYA. Goals and objectives for
an AYA palliative care cancer rotation are presented. Guidance is also provided
on ways to support an AYA's quality of life as end of life nears.
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