Improving Cancer Survivorship for Adolescents and Young Adults
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Improving Cancer Survivorship for Adolescents and Young Adults
Mandi Pratt-Chapman, MA, Associate Center Director, Patient-Centered Initiatives & Health Equity, GW Cancer Center, Washington, DC
Abstract: Adolescent and young adult (AYA) cancer survivors face challenges of transitioning to adulthood as well as long-term and late effects of cancer and its treatment. These unique AYA survivorship needs necessitate interventions and approaches that are tailored to the population. To identify successful and promising interventions to address AYA posttreatment needs, the George Washington Cancer Institute held a symposium that brought together cancer survivors and caregivers, researchers, clinicians, and other healthcare professionals to identify key issues for these survivors, explore current approaches for addressing these concerns, and recommend interventions that may improve survivorship care and quality of life for AYAs. Participants explored 5 key areas of need related to healthcare delivery system challenges, psychosocial impacts, health maintenance needs, employment issues, and community-level barriers. Based on perspectives from diverse stakeholders, this paper provides an overview of key issues for AYAs and identifies some strategies and interventions for improving care and support.
Adolescents and young adults (AYAs) with a past diagnosis of cancer, whether diagnosed in childhood or in young adulthood, face consequences from the disease and its treatment. Some of these effects, such as infertility, are different for adult survivors of pediatric cancer (ASPC) and young adult cancer survivors (YACS), who are between the ages of 15 and 39 years, than for older adults, while other impacts are exacerbated by their life stage. Because of these distinctions from older adults, these populations must be considered separately from older survivors to best address posttreatment challenges. Although ASPC and YACS are distinct with different impacts, this paper focuses on the commonalities of survivors who are AYAs.
People who are between 15 and 39 years of age are at a significant transition period in their lives with psychological, developmental, and social changes occurring.1 Despite variance in emotional age and maturity, AYAs tend to have limited experience with illness; are expected to meet many social milestones, such as graduating from school or starting a career; and are in their reproductive years. This time period can be especially difficult for AYAs who are also burdened by the impacts of cancer survivorship. To contribute to knowledge about the ongoing challenges facing ASPC and YACS, the George Washington Cancer Institute (GWCI) held its second Cancer Survivorship Research Symposium, entitled Research to Practice: Creating Novel Interventions to Eliminate Health Inequalities. This paper summarizes the discussion of some key posttreatment issues, current approaches to address those issues, and recommendations and interventions that may be useful.
Defining the Populations
The National Cancer Institute (NCI) classifies ASPC as having been diagnosed with cancer before the age of 15 years.2 For all pediatric cancers combined, the survival rate is 83%, a significant improvement from 58% in the mid-1970s, although the survival rate for some cancers is not as high.3 With this increasing population, the Childhood Cancer Survivor Study (CCSS) was launched to better understand long-term impacts for this group. Through numerous publications, the study has documented the risk for secondary cancers and other medical issues, reproductive complications, and psychosocial and health behavior issues.4 Pediatric cancer survivors are often followed at cancer centers by their oncology team until they reach adulthood. After this time, however, many ASPC no longer receive regular follow-up care.5
While there is debate about the age range for AYAs, the NCI defines this population as ages 15 to 39 years at time of diagnosis.1,6 Survival rates have improved for older and younger populations since the 1970s; yet, AYAs have experienced little improvement in survival rates during the same period. With low rates of clinical trials participation and the lack of infrastructure to collect data on AYAs, little is known about the long-term impacts on this population. Moreover, treatment exposures differ across diverse cancer types, so it is difficult to assess exposure-based outcomes.7 Consequently, much of what is known about YACS has been extrapolated from adult and pediatric experiences.8 There is evidence, however, that suggests some of the central medical issues for YACS are second primary cancers, cardiotoxicity, infertility, and amputation.8 Psychosocial issues, such as psychiatric effects, educational and social functioning, and financial concerns, also impact YACS.8 Because they are particularly mobile,1 and fall in a “no-man’s land” where neither pediatric nor adult oncology might best meet their needs, YACS may be more likely to go without follow-up care.7
Defining the Challenges
Despite the availability of long-term follow-up care guidelines, most ASPC do not regularly receive care focused on the long-term impacts of cancer and its treatment.5 Nathan et al found that fewer than 18% of survivors in a CCSS cohort had visited a healthcare provider to specifically address treatment impacts within the previous 2 years.5 Though some cancer centers have implemented long-term follow-up clinics that focus on delivering risk-based care, adult survivors who were treated as children or adolescents, who are at increased risk for lingering impacts, are often not followed in those clinics.9 Most ASPC, many of whom are unaware of their long-term risks,5 are cared for by community primary care providers who often have little training to deal with these survivors.10,11 Oeffinger and colleagues found that the percentages of survivors of a cohort of the CCSS who reported general medical contact ranged from 82% to 94%, while only 28% to 64% had a cancer-related visit, and 12% to 40% had a cancer center medical visit.10 YACS face an even more fractured care system because they may be treated by a variety of physicians in different settings, including pediatricians, gynecologists, dermatologists, and other specialists.1 Barriers specific to this group include a lower level of concern for treatment-related problems, mobility, and insurance and employment issues.1 The National Comprehensive Cancer Network recently announced new AYA guidelines that provide guidance for YACS, but it will take some time for these guidelines to be integrated into practice.
AYAs are particularly vulnerable because cancer intersects with the developmental transition to adulthood that involves a time of constant change.8,12 Few studies explore psychosocial impacts on YACS, but there is a growing body of research on the impacts for ASPC.12 Studies suggest that many ASPC are psychologically healthy, but for some subsets there are psychosocial issues, including depression, uncertainty, reduced health-related quality of life, and posttraumatic stress.13-19 YACS may also experience concerns with relationships, sexuality, and body image.20-23
Some of the medical and psychosocial impacts of cancer can be exacerbated by risky health behaviors.24 Modifying health behaviors is important for cancer survivors because it may reduce some of the late and long-term effects. Tobacco use is a particularly risky behavior. Other especially risky behaviors are physical inactivity, excess consumption of alcohol, poor nutrition, becoming obese or overweight, and nonadherence to sun protection.25-27
Being unemployed or struggling to maintain employment can impact the ability of ASPC and YACS to obtain follow-up care. Unemployed AYAs may not have access to employer-based health insurance, creating a barrier to accessing medical and psychosocial care. Although the Affordable Care Act extends the age children can stay on a parent’s insurance up to age 26 years, AYAs may be unable to remain on their parents’ health insurance plans for other reasons. When compared with healthy controls, ASPC have been found to be twice as likely to be unemployed.28 Certain diagnostic, treatment, and demographic variables correlate to unemployment, and health problems and disabilities may explain the higher rates for ASPC.29,30 For example, cranial radiation can lead to neurocognitive effects for CNS and brain tumor survivors that put them at significant risk. YACS, particularly those with cognitive impacts, may also struggle with employment.1
In May 2011, GWCI’s Center for the Advancement of Cancer Survivorship, Navigation and Policy (caSNP) held a symposium focused on raising awareness of survivorship concerns and improving research and clinical care for ASPC and YACS who are AYAs. One of the goals of the symposium was to leverage expertise of various stakeholders to collaboratively identify innovative interventions and solutions to physical, psychosocial, emotional, and economically derived health disparities within these populations. The agenda was developed by a committee representing national organizations (American Cancer Society, Children’s Cause for Cancer Advocacy, CureSearch, LIVESTRONG, National Coalition for Cancer Survivorship, The Ulman Cancer Fund for Young Adults), survivorship researchers, institutions that provide posttreatment care to ASCP (GWCI and Children’s National Medical Center) and 2 survivors (1 ASPC and 1 YACS).
Participants were recruited through the GWCI caSNP listserv of healthcare professionals, a GW press release, the Oncology Nursing Society, American Academy of Child and Adolescent Psychiatry, the Association of Oncology Social Work, the committee members’ professional networks, and the Metropolitan Washington Public Health Association. Sixty-eight individuals attended the symposium, including cancer survivors and caregivers, researchers, clinicians (nurses, nurse practitioners, physicians, and social workers), and other healthcare professionals. Participants represented 11 cancer advocacy organizations, the American Society of Clinical Oncology, the National Cancer Institute, and 19 academic and community health services organizations. Eleven participants (16%) identified themselves as cancer survivors and 8 (12%) as caregivers, though many participants identified themselves as having multiple roles (ie, nurse and survivorship researcher or physician, caregiver, and survivorship researcher).
A key part of the meeting was including the survivor perspective in each session to accentuate the patient experience. Five key topics were identified for meeting participants to explore in breakout sessions: healthcare delivery system challenges, psychosocial impacts, health maintenance needs, employment issues, and community-level barriers. These topics were selected based on advisory committee verbal consensus of the areas most in need of innovative interventions to improve survivor outcomes. In these breakout sessions, attendees were tasked with identifying problems, current approaches, and solutions or interventions to address the 5 challenge areas. Breakout group facilitators took notes during the sessions and reported results to all conference participants.
Discussion and Recommendations
Healthcare Delivery System Challenges
The Healthcare Delivery System Challenges session focused on proposing health system changes to facilitate transition of ASPC to age-appropriate care and facilitate access to optimal survivorship care for YACS. This session was facilitated by a nurse practitioner from Children’s National Medical Center and an ASPC working at the National Coalition for Cancer Survivorship. The main problems identified for ASPC and YACS were care fragmentation, the lack of definition around where long-term follow-up should take place and who should provide care, the lack of age-appropriate resources, the economic burden for these populations, and the mobility of the age group, which can cause difficulty accessing records and ensuring continuity of care. Participants discussed current strategies for addressing the long-term needs of these survivors. Risk-based care and programs that transition survivors from the pediatric to adult care setting are existing clinical interventions identified. A core component of these follow-up programs is the Survivorship Care Plan (SCP), a document that includes a treatment summary and a road map for follow-up care that can be shared with the survivor and other healthcare providers. Although the group noted that these clinical programs are not standard, some policy initiatives, such as the Comprehensive Cancer Care Improvement Act that would reimburse for time spent creating the SCP and the Commission on Cancer’s new accreditation standards that require the delivery of the SCP, may spur system-level changes to improve posttreatment care. Also, participants identified an increase in the number of ASPC- and YACS-specific conferences (eg, Stupid Cancer’s OMG! Cancer Summit for Young Adults) as well as age-appropriate resources and peer support opportunities (eg, First Descents, Planet Cancer, Tigerlily Foundation), which can help educate survivors about the need for follow-up care.
Several possible solutions were recommended. Expanding the number of transitional survivorship programs can help to ensure that AYAs have access to appropriate posttreatment care. As these programs are established, participants noted that they should be catalogued in a central location for reference by providers and survivors, which may be helpful in increasing continuity of care for survivors who are mobile. To drive survivors to care, providers, including oncologists and primary care physicians, need to be educated about the needs of these survivors and trained on follow-up guidelines for ASPC and YACS. The group also discussed that survivors must also be educated so they understand the need for follow-up care and how they can minimize negative impacts. Importantly, the need for infrastructure for tracking outcomes was mentioned, especially for YACS.
Facilitated by a YACS who works at CureSearch, a researcher from the American Cancer Society, and an
ASPC researcher from Wake Forest University, the Psychosocial Impacts session was designed to identify
support interventions that would address posttreatment psychosocial challenges. Participants identified numerous psychosocial challenges, including depression/coping issues; parental stress (for survivors with children); survivor guilt related to added financial pressures; family dynamics; chemo brain; sibling resentment, guilt, and coping; school reintegration; developmental regression and parental difficulty letting a child go; negotiation of adult identity integrating the cancer experience; social isolation; new/old relationships and dating; body image; and sexuality, intimacy, and fertility.
While limited, some resources identified by participants are available to address these unmet psychosocial needs. Psychosocial screening tools, such as the Impact of Cancer—Childhood Survivor (IOC-CS)31 or the Health Utilities Index,32 were identified as having measures that can be used in the AYA population. It was emphasized, however, that screening must be coupled with support. Session attendees pointed out that some institutions offer psychooncology programs that are linked with their survivorship services, and community organizations can play a critical role in providing age-appropriate support. This group also cited the increasing number of conferences for this population along with the emergence of organizations providing peer-to-peer support. Participants noted that organizations like Camp-Mak-A-Dream and First Descents offer AYA camps and retreats and that art therapy programs have been effective interventions.
The group also recommended training physicians in psychosocial care and AYA development. They suggested that providers should create partnerships across disciplines so psychosocial assessment and care become part of a multidisciplinary approach. Some of the work could begin before treatment ends; providers can encourage the integration of social support networks into the treatment process (eg, allow friends to come to chemo, enable remote video to connect classrooms to hospital rooms) so survivors have continued support in the posttreatment phase. Attendees pointed out that these social support components should also be made available through activities that occur outside of the care setting. They also noted that community interventions that target psychosocial needs should be developed so they are accessible and easy to implement across geographic settings. Other recommendations made by the group include partnering with community organizations (eg, churches, health ministries, community health workers), engaging media to disseminate messages, providing education/outreach where these survivors are (eg, clubs), and creating a “stamp of approval” for AYA centers.
Health Maintenance Needs
The Health Maintenance Needs session focused on identifying solutions to increase knowledge of and adherence to long-term follow-up guidelines to increase healthy behaviors. Facilitated by a survivorship researcher from Alpert Medical School of Brown University & Miriam Hospital and a YACS who works for the Children’s Brain Tumor Foundation, the group highlighted overweight and obesity, smoking and alcohol use, unprotected sun exposure, and unprotected sex as health behaviors that are problematic. The discussion of interventions to address risky behaviors included mention of the Partnership for Health’s peer-delivered smoking cessation program for ASPC33 and physical activity interventions, such as Survivors Step Into Motion and the Survivors RENEW study, both currently being tested in YACS. Also noted, the Survivor Health and Resilience Education Program was developed for ASPC to address different health behaviors, and it has been shown to be effective in improving sun safety and bone health.34-36 The use of social media campaigns was also mentioned to promote general health in the AYA population.
A multipronged approach was recommended that involves clinical practice, policy changes, technology, and patient tools. Healthy behaviors should be emphasized at all clinical visits. Attendees indicated that health promotion counseling and education can take place in the follow-up care setting and can be included in the SCP and its discussion. The SCP could help improve continuity of care across providers by ensuring health behaviors are discussed. The group pointed out that some interventions (eg, nutrition counseling) can begin in treatment and continue through survivorship. Policy changes, such as insurance coverage of exercise interventions, were also identified as likely being necessary.
Participants discussed that providing multiple interventions in different formats can give survivors a choice, which may improve success, and utilizing new technologies like smartphones may be an effective strategy. For example, it was mentioned that smartphone applications and text messaging programs could be developed that focus on health tips, exercise tips, and dietary assessment. Participants in this session recommended creating tools to increase survivors’ ability to advocate for themselves and leveraging community resources, such as gyms. As interventions are developed, participants emphasized, it is important for survivors to be included in their design.
The Employment Issues session explored interventions for ASPC and YACS who have experienced setbacks in their career because of their cancer and its treatment. The session was facilitated by 2 LIVESTRONG staff, one of whom is a cancer survivor. The main challenges identified were neurocognitive deficits in survivors who received CNS treatments as children, lower levels of education or vocational training, and lower employment rates than the rest of the population. The group noted several current approaches to addressing employment issues. Some survivorship clinics, such as the George Washington University Thriving After Cancer Program and the City of Hope Childhood Cancer Survivorship Clinic, provide additional vocational programs to help with employment needs. Participants discussed that pharmacological interventions and cognitive remediation and rehabilitation may also be available. It was noted that the LIVESTRONG Young Adult Alliance brings together over 140 organizations serving these populations, some of which offer employment resources and services (eg, Cancer Legal Resource Center, Cancer and Careers), and that the Patient Advocate Foundation also provides free case management related to employment and other issues. Participants also pointed out that organizations and online communities, such as Imerman Angels and Planet Cancer, provide peer support that may be helpful for coping with employment concerns.
The group recommended that the following improvements be made in research, education, and services across several sectors. Employers represent a large group that could provide critical information to understand survivors’ employment needs, and they could play a role in helping to address these needs. Research findings might validate the need to add vocational and career services to multidisciplinary survivorship programs. Participants indicated that studying cancer survivors’ needs related to workplace accommodations can help identify effective, reasonable requests specific to ASPC and YACS returning to work. With this research, it was discussed that an educational curriculum can be developed so employers know how to implement reasonable accommodations for their AYA survivor employees. The group also noted that educational resources can be developed to inform survivors how to address employment issues.
Facilitated by 2 cancer survivors, 1 from the Tigerlily Foundation and 1 a psychosocial researcher from the University of Michigan Comprehensive Cancer Center, the Community-Level Barriers breakout explored ways to generate potential interventions that could be implemented from within target communities to optimize quality of life. Community organizations fill a critical gap in providing survivorship information, support, and resources, particularly for populations that have limited access to the healthcare system, such as AYAs who are uninsured or underinsured. Participants indicated that when survivors have clinical visits, providers must understand the life situation of the patient to develop an SCP that addresses the whole person and acknowledges individual circumstances. Collaborations can leverage resources across community, academic, government, and private entities. The group identified community events (eg, health fairs, mobile screenings, symposia) to help address access issues and provide education that may not be readily available to the target population. Centralized regional resource inventories, such as American Cancer Society’s resource database, should include ASPC- and YACS-specific resources to increase awareness about existing resources. New family-based interventions and awareness campaigns may also be useful for promoting health in the community.
Increasing attention has been given to the unique needs of AYAs who have a history of cancer. The long-term and late effects of the disease and its treatment are often compounded by the developmental stage of people in this age range. Entering adulthood without adequate support systems can impact whether one receives appropriate posttreatment care, which can impact morbidity and mortality. While there are many challenges in survivorship care in general, there are many barriers specific to ASPC and YACS that must be addressed to optimize health for these AYA survivors.
The meeting findings offer several implications for practice and research. Connecting various issues to create a more complete picture of AYA survivorship, the breakout sessions outlined key challenges identified by survivors and caregivers, clinicians, researchers, and other healthcare professionals and also noted existing resources and efforts. Understanding the multiple challenges across these domains can help healthcare professionals better care for ASPC and YACS. Several recommendations have implications for clinical services and support programs, such as transitional care models or increased peer support. The recommendations also provide guidance to help researchers and program developers create more tailored, age-appropriate interventions to address ASPC- and YACS-specific needs, such as those related to employment or healthy behaviors. Finally, the symposium results demonstrate the importance of survivor engagement in the identification and implementation of care improvements.
Acknowledgments: The GWCI Cancer Survivorship Research Symposium was supported by The Pfizer Foundation, Pfizer Inc, EagleBank Foundation, The George Washington University Hospital Women’s Board, the American Cancer Society, LIVESTRONG, and the National Cancer Institute (supported by Award Number R13CA159823). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute or the National Institutes of Health.
Disclosures: Mandi Pratt-Chapman, MA, and Anne Willis, MA, report receiving grants from The Pfizer Foundation, Pfizer Inc. Jennifer Bretsch, MS, and Steven R. Patierno, PhD, have nothing to disclose.
Corresponding author: Mandi Pratt-Chapman, MA, The George Washington Cancer Institute, 2030 M Street, Suite 4069, Washington, DC; e-mail: firstname.lastname@example.org.
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