- © 2010 by American Society of Clinical Oncology
Quality Cancer Care for Adolescents and Young Adults: A Position Statement
- From the Standards of Care Task Force, LIVESTRONG™ Young Adult Alliance, a program of the Lance Armstrong Foundation; Association of Oncology Social Work, Philadelphia, PA; University of Michigan Comprehensive Cancer Center and School of Social Work, Ann Arbor, MI; Science Applications International Corporation, McLean, VA; Childrens Hospital Los Angeles; and Keck School of Medicine, University of Southern California, Los Angeles, CA.
- Corresponding author: Brad Zebrack, PhD, MSW, MPH, 1080 S University, Ann Arbor, MI 48109-1106; e-mail: zebrack{at}umich.edu.
Abstract
Purpose This consensus-based position statement on behalf of the LIVESTRONG Young Adult Alliance (Alliance) offers recommendations to enhance oncologic care of adolescent and young adult (AYA) patients with cancer.
Background In 2005 to 2006, the National Cancer Institute and the Lance Armstrong Foundation jointly sponsored the Adolescent and Young Adult Oncology Progress Review Group (PRG). The PRG report included the directive to develop standards of care for AYA patients with cancer and to disseminate these guidelines to the community. To this end, the Alliance convened a meeting of experts (clinicians, researchers, and advocates) in June 2009 and derived this position statement.
Results Quality care for AYAs depends on four critical elements: timely detection; efficient processes for diagnosis, initiation of treatment, and promotion of adherence; access to health care professionals who possess knowledge specific to the biomedical and psychosocial needs of this population; and research that will ultimately derive objective criteria for the development of AYA oncology care guidelines. Achieving quality care for AYAs will require assistance with management of disease and treatment effects; cognizance of the unique psychosocial context for AYA growth and development; assessment of and attention to cognitive, psychiatric, and psychosocial issues; facilitated transition to treatment care; and referral to age-appropriate information and support services.
Conclusion Dissemination of recommendations stated here will raise awareness of the need for AYA-specific care guidelines and assist providers in the delivery of care that is responsive to the distinct needs of AYAs with cancer.
INTRODUCTION
The incidence of cancer in young people ages 15 to 30 years has steadily increased during the past 25 years.1 In 2009, an estimated 62,000 people in the United States between the ages of 20 to 39 years old will have been diagnosed with invasive cancer.2 Cancer is a leading cause of nonaccidental death among adolescents and young adults in the US.3 Despite advances in cancer prevention, early detection, and treatment over the past several decades, survival rates and quality-of-life (QOL) outcomes for adolescents and young adults (AYAs) diagnosed with cancer have not improved to the extent they have for younger children and older adult cancer populations.4–6 Progress in advancing biomedical and psychosocial outcomes for AYAs has been limited by a number of factors, including suboptimal knowledge of and access to specialized care, inconsistent referral practices, limited research on cancer in this age group accompanied by limited access to and participation in clinical trials, inconsistency in treatment and follow-up care, and limited psychosocial resources and services with an AYA-specific focus.1,6–11
The current lack of evidence-based guidelines and standards of care specific to AYAs with cancer results in health care providers, either appropriately or perhaps inappropriately, treating AYAs based on guidelines developed for the treatment of children or older adults. Referral patterns are arbitrary and usually based on the patient's age—those under 18 are commonly referred to pediatric oncology specialists and those 18 or older are referred to adult oncology specialists—and neither group has the majority of its patients in the AYA age range of 15 to 39. While prospective research and data for this age group are sparse, retrospective analyses of disease-specific protocols within this 15- to 39-year-old age range are beginning to distinguish cancer biology and treatment responses in the AYA population from that in older adults and children.3–6,12–14 Furthermore, current institutional environments and care settings created for the treatment of children or older adults with cancer are not fully equipped to address the unique needs of a highly mobile AYA population experiencing multiple demands such as work, school, raising children, and assisting aging parents, all of which can be potential barriers to optimal treatment adherence. To date, we lack state-of-the-art therapies, protocols, and evidence-based practice guidelines for AYAs diagnosed with cancer.
Recognizing the need to improve outcomes for AYAs across the cancer control continuum, the National Cancer Institute (NCI) and the Lance Armstrong Foundation jointly sponsored the Adolescent and Young Adult Oncology Progress Review Group (AYAO PRG) in 2005 to 2006. This group reviewed the biologic, biomedical, and psychosocial aspects of cancer diagnosis and treatment in the AYA population and published imperatives for improving measurable outcomes in a report entitled “Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer.”15 The LIVESTRONG™ Young Adult Alliance (Alliance), a coalition of 110 organizations representing clinicians, researchers, and patient advocates, created a 5-year strategic implementation plan for the AYAO PRG recommendations.16 This implementation plan includes a strategy to “Develop standards of care guidelines for AYAO programs and patients, and [to] disseminate these guidelines to the community.”16 To facilitate this effort, on June 7 to 8, 2009, the Alliance convened an expert panel of 28 individuals representing cancer centers, academia, community-based care settings, and nonprofit service agencies (Appendix, online only).
This position statement is the product of that collaboration. It is a preliminary step toward enhancing care for AYAs by providing consensus recommendations intended to supplement existing standards of care that apply to all oncology patients, such as the clinical practice guidelines in oncology disseminated by the National Cancer Comprehensive Network.17 By putting forth these recommendations, we hope to raise awareness of the need for evidence-based guidelines for AYA care and, in the interim before development of those guidelines, assist NCI-designated cancer centers, community cancer centers and hospitals, and private oncology practices in delivering optimal quality cancer care for AYAs. This position statement reflects distinct needs related to the diagnosis, treatment, and care of AYAs with cancer, as suggested by emergent research and clinical observations.18–22
SUMMARY OF RECOMMENDATIONS
The Alliance recommends the following: formulation of standards of care for AYAs with cancer that ensure excellence throughout the continuum of care from awareness and timely detection through treatment, survivorship, or end of life care; access to and availability of health professionals with the education, training, and experience necessary for providing age-appropriate medical, psychosocial, and supportive care services (a physician champion is essential); consider the resources of the facility that provides care (eg, NCI-designated cancer center v community hospital); for facilities that cannot provide direct access to AYA-specific care, locate and encourage facilitated access to AYA-specific oncology care within the oncology community at-large; develop and apply scientific standards to support efficacious treatment protocols for AYA patients with cancer; promote awareness and education for providers, particularly around need to increase participation of AYAs in clinical trials; and develop and implement strategies for integrating the critical elements outlined in this consensus statement into clinical practice in a way that allows for systemic evaluation of measurable outcomes and advancements in care based on these measurements.
PERSONNEL, COMPONENTS, AND SERVICES
Consistent with the Institute of Medicine's report on quality cancer care,20 treating programs or institutions must have internal or adjunct access to facilities, personnel, and services that enhance care for AYA patients with cancer. Currently, AYA cancer care is delivered through large academic institutions, NCI-designated cancer centers, free-standing community cancer programs, ambulatory care clinics (eg, radiation clinics and chemotherapy infusion units), medical oncology groups, and individual practices. Wherever the location of care, it is imperative that those treating AYA patients with cancer have access to an appropriate knowledge base and expertise appropriate to each AYA's diagnosis. Oncology care providers who are educated to specific issues related to AYAs with cancer (eg, fertility preservation, preventing social isolation, potentially differential responses to treatment based on protocols selected) are better equipped to provide tailored AYA oncology care. To expect every treatment setting, from large institutions to private oncology practices, to possess all the personnel, facilities, and components needed for the best treatment of the AYA patient with cancer is not realistic. The resources available to these institutions vary enormously. Given this reality, providers and treating institutions can reasonably be expected to have knowledge of ancillary and supportive care opportunities for AYAs with cancer and to provide referrals to appropriate sources within care networks or in the broader community, as opposed to being expected to have an AYA-specific specialist on staff.
There is, however, potential value in the identification of an AYA champion—an oncology care provider who is available to other physicians and oncology care providers for the purposes of consultation within institutions and communities and across oncology-related disciplines and departments. Ideally, this AYA champion would be educated to the specifics of AYA oncology as well as adult and pediatric oncology issues. Practically, a more likely scenario is a model in which an AYA champion is a specialist who collaborates and coordinates care across different services (eg, pediatric oncology, adult oncology, gynecology, urology, radiation oncology, surgery). To assure that the unique needs of AYA patients are met, an AYA champion could, among other activities, seek to increase the availability and enrollment of AYAs on clinical trials, promote multidisciplinary tumor board discussions of AYA patients that include pediatric and medical oncology representation, and provide access to age- or developmentally appropriate psychosocial care (including supportive counseling and peer support programs).
Figure 1 offers a graphic representation of recommended personnel, components, and services integral to AYA optimal care and suggests when along a continuum of care these elements should be activated. While many of these elements can be considered critical for the care of cancer patients of any age, we suggest that due to AYAs' unique physiology, cancer manifests differently in AYAs than inchildren and older adults. The personnel listed in this document must be cognizant of how this affects AYAs' psychology and overall QOL, and thus must be educated to administer biomedical and psychosocial therapies or interventions appropriate to this population. The companion manuscript “Adolescent and Young Adult Oncology Training for Health Professionals: A Position Statement” addresses the elements of training and education that health professionals committed to the care of AYAs should receive.23
AYA cancer care personnel, components, and services. AYA, adolescents and young adults.
CRITICAL ELEMENTS, CLINICAL CARE STRATEGIES, AND MEASURABLE OUTCOMES FOR IMPROVING AYAO CARE
Improvements in treatment outcomes, survival rates, and QOL for this age-specific population depend on four critical elements: timely detection; efficient processes for diagnosis, initiation of treatment, and promotion of adherence; access to health care professionals who possess knowledge specific to the biomedical and psychosocial needs of this population, including knowledge of the evidence-based treatment protocols for achieving best outcomes for AYAs; and rigorous AYA-specific research. Examples of clinical care strategies reflecting these elements are summarized in Table 1, along with examples of suggested outcome measures to demonstrate the effect of these AYA-specific elements on survival.
Critical Elements, Sample Strategies, and Outcome Measures for Improving Survival
IMPROVING QUALITY OF CARE AND QOL ACROSS THE CANCER CARE CONTINUUM
As described elsewhere,1,8,11 research has begun to identify the unique impacts of cancer on QOL issues for AYAs. Thus, clinical care and investigations of cancer's impact on QOL and psychosocial outcomes must take into account the stage of life at which cancer is diagnosed in these young people.
To enhance QOL and quality of care for AYA patients with cancer, providers must address the specific health and psychosocial needs of AYAs. Doing so will require: assistance with the management of disease and treatment effects, particularly fertility and body image issues; cognizance of the unique psychosocial context for AYA growth and development; assessment of and attention to cognitive, psychiatric, and psychosocial effects and needs; facilitated transition to off-treatment care; and referral to available age-appropriate information and support services when indicated. Sample strategies for achieving these objectives are summarized in Table 2.24 Ultimately, the success of clinical care strategies may be determined by observation and measurement of the outcomes or competencies listed in Tables 1 and 2.
Critical Elements, Sample Strategies, and Outcome Measures for Improving QOL and Quality of Care Throughout the Cancer Care Continuum
NEXT STEPS AND CHALLENGES
The recommendations set forth here are intended to be a first step toward raising awareness of the need for guidelines of care in AYA oncology. As next steps in an implementation strategy for developing standards of care, the Alliance recognizes the need to test and validate the extent to which recommendations proposed here in fact result in improved survival and QOL outcomes. As clinical programs and new models of care for treatment of AYA patients emerge, studies need to derive objective evidence demonstrating the efficacy of critical components and strategies that ultimately will form clinical care guidelines. Complex issues exist that make the creation of guidelines challenging, including but not limited to the following: health systems outside the US use different terminology and a narrower age range to define the AYA oncology population; these facts, in addition to their greater dedicated resources, make it difficult to apply their lessons learned in the US;25,26 the US health system consists of multiple tiers of health care professionals, from general practitioners within the community to oncology specialists at large NCI-designated cancer centers, making increased awareness of AYA oncology and the provision of specialized care throughout the system difficult; the development of systematic research methods and measurable outcomes depends on the availability of funded research opportunities and settings, and all in a time of limited resources and economic pressures; and the ability to address research questions related to this age-specific population is dependent on the accrual of sufficient numbers of AYA patients to studies and clinical trials for statistical analyses to have analyzable power.
CONCLUSION
We set forth these recommendations for the oncology community to stimulate interest and illustrate the need to enhance quality of care for AYAs. Evidence-based guidelines for AYAO care will offer providers objective criteria by which they can assess the quality of care provided in their programs to this age-specific population. In the interim, health care providers in all settings may improve treatment outcomes and QOL for AYAs with cancer by adopting recommendations in this position statement.
AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST
The author(s) indicated no potential conflicts of interest.
AUTHOR CONTRIBUTIONS
Conception and design: Brad Zebrack, Beth Mathews-Bradshaw,Stuart Siegel
Administrative support: Beth Mathews-Bradshaw
Provision of study materials or patients: Stuart Siegel
Collection and assembly of data: Brad Zebrack, Stuart Siegel
Data analysis and interpretation: Brad Zebrack, Stuart Siegel
Manuscript writing: Brad Zebrack, Beth Mathews-Bradshaw,Stuart Siegel
Final approval of manuscript: Brad Zebrack, Beth Mathews-Bradshaw, Stuart Siegel
Acknowledgment
The authors/co-chairs wish to acknowledge the following members of the LIVESTRONG™ Young Adult Alliance for their contributions in the preparation of this article: Kristin Bingen, Ashley Wilder Smith, Douglas Bank, Lindsay Beck, Debra Friedman, Daniel Indelicato, Rebecca Johnson, Rebecca Morris, Stacy Sanford, Leonard Sender, Lauren Spiker, and Ronald Waldheger.
Appendix
In addition to the authors, participants at the Standards of Care for Adolescents and Young Adults with Cancer Meeting included: Heidi Adams, Planet Cancer; Karen Albritton, Cook Children's Medical Center; Yvette Colon, American Pain Foundation; Pat Fobair, Stanford University; Nicole Grant, National Cancer Institute (NCI); Keren McCord, Oregon Health & Science University (OHSU); Raul Mena, St. Joseph's Hospital, Burbank, CA; Robert Mennel, Baylor College of Medicine; Sheila Santacroce, Yale Medical School; Elizabeth Saylor, Ulman Cancer Fund for Young Adults; Ashley Wilder Smith, NCI; Debra Friedman, Vanderbilt University; Sylvie Aubin, McGill University; Lindsay Beck, Fertile Hope; Archie Bleyer, St. Charles Medical Center; Kim Day, University Hospitals, Cleveland, OH; Kieron Dunleavy, NCI; Joseph Flynn, Ohio State University; Brooke Hamilton-Leggin, NCI; Brandon Hayes-Lattin, Oregon Health & Science University; Julie Larson, CancerCare; Stacy Sanford, Robert H. Lurie Comprehensive Cancer Center; Karla Wilson, Oncology Nursing Society; and Nicholas Yeager, Ohio State University.
Footnotes
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The LIVESTRONG™ Young Adult Alliance, a program of the Lance Armstrong Foundation, provided funding and staff support for the Standards of Care for Adolescents and Young Adults with Cancer Meeting and this resulting position paper.
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The ideas and opinions expressed herein are those of the authors and the LIVESTRONG™ Young Adult Alliance. Endorsement by the author's or Alliance member's individual institutions is not intended, nor should it be inferred.
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Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.
- Received May 17, 2010.
- Accepted August 5, 2010.
