However, palliative care is often not considered until curative treatment options are no longer available. As pain and symptom management is needed with varying intensity at different stages of disease, integration of palliative care at the time of diagnosis enables a supportive partnership with the medical team, with palliative care needs intensifying as the disease progresses.
Early, systematic integration of palliative care into standard oncology practice represents a valuable, imperative approach to improving the overall cancer experience for AYAs.1
Just as palliative care should be integrated early in the disease trajectory of AYA patients, palliative care training should be integrated early in the professional development of trainees.
The term “palliative care” is derived from the Latin word “palliare”, meaning “to cloak”. Sewing palliative care training in as a thread of technical skills in the preclinical years would tie nicely to bedside guidance during the clinical years, enabling didactic and experiential learning to be cohesively woven together.
This article reviews unique epidemiologic, developmental, and psychosocial factors that make the provision of palliative care especially challenging in AYAs. Critical instructional strategies and educational issues for provider training are addressed from the perspective of the trainer, trainee, and AYA.
An estimated 70,000 AYAs are diagnosed with cancer each year in the US.2 This group is treated across both pediatric and adult settings, and often lacks a focused group of health-care experts who address the unique changes in the types of cancer and subsequent responses to prescribed therapies.3–5
New cancers emerge in this group, which are relatively rare in younger patients. Such cancers include malignant epithelial neoplasms (eg, thyroid carcinoma, malignant melanoma)6,7 and malignancies involving reproductive organs (eg, testicular cancer, uterine, cervical, and breast cancer), which increase dramatically in this age group.
Acute lymphoblastic leukemia exhibits less favorable cytogenics with a higher incidence of Philadelphia-positive chromosome and, overall, a worse prognosis than in younger children.8
The incidence of acute myelogenous leukemia (AML) increases in late adolescence and emerging adulthood with a less favorable prognosis.8
Unfortunately, the overall survival rate for AYAs has not kept pace with individuals diagnosed with cancer under age 15 or over age 40.9
Furthermore, the 10- and 20-year survival rates dramatically decrease in AYAs. For example, the 20-year survival rate for individuals 15–29 years old diagnosed with AML is only 20%–27%.8
It has been nearly a decade since AYA disparities were initially reported.5 Disparities seen in this population have been linked to a number of factors including delays in diagnosis,10 ineffective access to care,11 lack of health insurance,10,12 lack of participation in clinical trials,13–15 inconsistent registration and/or classification of AYA cancers,16 inconsistent treatment and follow-up,17–20 problems with treatment adherence,21,22 and changes in AYA cancer biology,3 and AYA pharmacokinetics.4 It is increasingly evident that creative training is needed to address the disparities of this unique age group.
A call for palliative care education to improve AYA care
Recent research has demonstrated improved number of days and QOL for adults referred early to palliative care practitioners.23,24
In response, the American Society of Clinical Oncology has developed a provisional clinical opinion stating that concurrent palliative care and standard cancer care should be considered early in the course of illness for patients with metastatic cancer or cancer with high symptom burden.25
Although the American Academy of Pediatrics also supports the integration of palliative components at diagnosis for patients aged 0–25 years regardless of the outcome (cure or death),26 the integration of palliative care for AYAs in clinical practice remains low.27
Quality cancer care for AYAs depends on access to palliative care professionals who are knowledgeable about the unique biomedical, psychosocial, and developmental needs of this population throughout the disease trajectory.28