It is well established that adolescents and young adults (AYAs) with cancer—defined by the National Cancer Institute as those between the ages of 15 and 39 years—have not reaped a comparable survival benefit as either younger or older adult cancer survivors over the past 4 decades, despite unprecedented advancements in more targeted cancer therapies. In fact, 5-year survival rates for AYAs have remained stagnant since 1975, and for individuals aged 30 to 34, survival rates have actually decreased.1 There are myriad reasons why such disparities in survival rates exist among this population, including age-related differences in tumor biology and aggressiveness, delays in diagnosis, increased treatment-related toxicity and mortality, gaps in oncology care, and less participation in clinical trials.
David Hui, MD, MS, MSc
In addition to worse survival outcomes, AYAs have inferior psychosocial outcomes, including poorer quality of life and emotional well-being compared to pediatric and older adult survivors, due to distinct developmental and psychosocial needs that may go unrecognized or unmet during their cancer treatment. When cancer strikes, individuals in this age group are often in the process of reaching developmental milestones—such as establishing their sense of self and sexual identity, dating, and starting careers and families—blunting their emotional progress and potentially causing long-term negative consequences, including ongoing posttraumatic stress disorder. Studies show that approximately 25% of AYA cancer survivors manifest posttraumatic stress disorder, and up to 90% have isolated symptoms of posttraumatic stress.2
Integrating palliative care into standard oncology practice for AYAs could improve their psychosocial outcomes and perhaps survival outcomes, according to David Hui, MD, MS, MSc, Associate Professor in the Department of Palliative Care and Rehabilitation and Integrative Medicine and Associate Professor in the Department of General Oncology, Division of Cancer Medicine, at The University of Texas MD Anderson Cancer Center, Houston.
Brandon Hayes-Lattin, MD, FACP
“There is emerging evidence showing that both a referral to specialty palliative care and routine screening in the oncology setting of patients’ symptom burden can be very helpful in improving their quality of life and maybe even improve their survival outcome. AYAs can certainly benefit from these two interventions, given their high levels of distress and unique supportive care needs,” said Dr. Hui.
The ASCO Post talked with Dr. Hui about the role of palliative care in adolescent and young adult patients from a cancer diagnosis until the end of life; how to assess the palliative care needs of these patients; and when to refer patients for outpatient specialty palliative care.
Role of Palliative Care
What is the role of palliative care in the treatment of AYAs with cancer from the time of diagnosis and throughout survivorship until the end of life?
I think of palliative care as providing a very important supportive role for all patients throughout the disease continuum, but it is especially important for AYAs. While both younger and older patients with cancer have a similar physical burden, studies show that AYA patients have much more psychosocial distress. Interdisciplinary care teams comprising a palliative care specialist, psychologist or psychiatrist, social worker, nurse, physical and occupational therapist, and chaplain, among others, can work with these survivors to address their multidimensional needs over time.
For example, palliative care teams can treat the pain-limiting function, address the psychosocial distress through counseling, and work with patients to support the important life goals they want to achieve, such as resuming school or work and coping with sexual dysfunction and infertility, which are fundamental to AYAs’ identity. There are also existential issues to contend with. These young patients say, “I’m so young, I haven’t had a chance to live my life,” and supporting these concerns is critical to both their short-term and long-term quality of life.
“I think of palliative care as providing a very important supportive role for all patients…but it is especially important for AYAs.”— David Hui, MD, MS, MSc
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Assessing Palliative Care Needs of AYAs
How can oncologists accurately assess the palliative care needs of these young patients? What signs should oncologists look for to spot areas of potential problems?
Emerging evidence suggests routine distress screening in the oncology setting can be very helpful in improving patients’ quality of life and maybe improve their survival outcome. Also, systematic screening can be linked to palliative care referral to further improve patient outcomes.
Many cancer centers are now implementing distress screening for this age group using screening tools such as the National Comprehensive Cancer Network® Distress Thermometer and Problem List for Patients (nccn.org/patients/resources/life_with_cancer/pdf/nccn_ distress_thermometer.pdf) and the Edmonton Symptom Assessment System (npcrc.org/files/news/edmonton_symptom_assessment_scale. pdf). These tools are picking up emotional issues in young adult patients and leading to more palliative care and psychology referrals to help manage symptoms of anxiety, depression, and fear. It would be even more useful to develop a distress screening mechanism tailored specifically to this age population, to address their very personal concerns, for example, about sexuality and body image.
Palliative care is a way to provide personalized cancer care to patients, and there should be more precise tools to recognize the unique psychosocial concerns of AYA survivors and to identify how to integrate palliative care into oncology care for this age group.
Referral Criteria for Outpatient Palliative Care
When is it appropriate for the oncology medical team to consult with a palliative care specialist for AYA survivors?
Currently, palliative care referral is predominately based on clinician judgment, so access is variable. Our group recently conducted a Delphi survey of 60 international experts to identify standardized criteria to trigger automatic referral to outpatient palliative care for patients with advanced cancer.3,4 Although our recommendations are not specifically aimed at the AYA age group, they are highly compatible with addressing the physical and psychosocial needs of these survivors.
We reached a consensus on 11 major criteria for outpatient palliative care referral—9 are based on patient care needs, including severe physical symptoms, severe emotional symptoms, request for hastened death, spiritual or existential crisis, assistance with decision-making or care planning, patient request for referral, delirium, spinal cord compression, and brain or leptomeningeal metastases; and 2 are based on timing, including within 3 months of advanced cancer diagnosis for patients with a median survival of 1 year or less, and progressive disease despite second-line therapy. Severe physical and emotional symptoms are defined as a measurement of 7 out of 10 on the distress rating scale, but ultimately referral to outpatient palliative care should happen at any time point the oncologist feels that physical and/or emotional symptoms are impacting the patient’s quality of life.
This international consensus is meant to offer general guidance on when to refer patients to palliative care, since resources for these services are limited and we don’t have the capacity to see every patient. It should also help identify individuals who are most likely to benefit from palliative care.
“While both younger and older patients with cancer have a similar physical burden, studies show that AYA patients have much more psychosocial distress.”— David Hui, MD, MS, MSc
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I have to emphasize that while age was not identified as a major criterion for referral, AYAs are particularly more likely to experience severe psychological distress and are thus more likely to require a referral. Indeed, many oncologists have already recognized this and are more often referring younger patients to palliative care than older adults. Not every young adult patient will need palliative care, but many will—and not just those with advanced cancer who are close to the end of life.
Ultimately, we need more research in this area to generate greater evidence to identify when is the best time to introduce palliative care and what are the best novel interventions to support this unique group of patients. ■
DISCLOSURE: Dr. Hui’s institution has received research funding from Helsinn, Insys Therapeutics, and Teva.
1. Bleyer A, O’Leary M, Ries LAG, et al: Cancer epidemiology in older adolescents and young adults 15 to 29 years of age, including SEER incidence and survival: 1975-2000. NIH pub no 06-5767, Bethesda, Maryland; National Cancer Institute; 2006.
2. Kazak AE, Alderfer M, Rourke MT, et al: Posttraumatic stress disorder and posttraumatic stress symptoms in families of adolescent childhood cancer survivors. J Pediatr Psychol 29:211-219, 2004.
3. Hui D, Mori M, Watanabe SM, et al: Referral criteria for outpatient specialty palliative cancer care: An international consensus. Lancet Oncol 17:e552-e559, 2016.
4. Hui D, Mori M, Meng YC, et al: Automatic referral to standardize palliative care access: An international Delphi survey. Support Care Cancer 26:175-180, 2018.