Adolescent And Young Adult Oncology Research Articles

AYA in the USA. International Perspectives on AYAO, Part 5

Within the past decade, the discipline of adolescent and young adult (AYA) oncology has taken root in the United States. It arose from the observation that survival improvements for 15-39-year-olds have lagged behind those of both children and older adults. Rapid progress in this new area has resulted from energetic work by researchers, clinicians, and non-profit organizations focusing on AYA-aged cancer patients and survivors. The term "AYA" is now well recognized within both pediatric and medical oncology, and AYA-specific aims are increasingly included in clinical trials and also basic and translational oncology research. The AYA oncology movement in the United States was spearheaded by the LIVESTRONG Young Adult Alliance (the Alliance), a coalition of AYA-focused non-profit organizations and academic institutions that has recently transitioned into a successor organization-Critical Mass: The Young Adult Cancer Alliance, composed of individual AYAO professionals. The work of groups such as the Alliance/Critical Mass and key collaborators-including the National Cancer Institute, National Comprehensive Cancer Network, Children's Oncology Group, and advocacy organizations-provides a useful platform for the discussion of progress in AYA oncology in the United States, including advances in (1) research and tool development; (2) public and professional education; (3) advocacy and patient support; (4) awareness; and (5) service delivery. AYA oncology programs are now burgeoning dramatically throughout the United States, and many well-established U.S. programs share distinctive features in clinical programming. The United States is now entering an era of larger-scale coordinated efforts in research, advocacy, and clinical care for AYAs with cancer.

Square Pegs, Round Hole? Ensuring Fit in the AYAO Spectrum for Adolescents and Young Adults with Genetic Risk for Cancer

This paper presents a case example of a young woman at genetic risk for future cancer. We discuss psychosocial challenges that adolescents and young adults (AYAs) may share with their cancer survivor peers, and describe an example of psychosocial care. A scientific foundation denoting the needs of AYAs at risk for heritable cancers is lacking, and it is unknown if these AYAs receive adequate support services. This is a call to action for practitioners and researchers to engage in initiatives that assure these AYAs have access to valuable support and more clearly mark their place within the spectrum of AYA oncology.

Palliative care for adolescents and young adults with cancer.

Adolescents and young adults (AYAs) with cancer represent a unique and challenging group of patients with distinct developmental and psychosocial needs that may be unrecognized or unmet during their cancer experience. Palliative care refers to the total care of a patient, regardless of his or her disease status, and aims to improve quality of life by controlling symptoms and alleviating physical, social, psychological, and spiritual suffering. Integrating palliative care into standard oncology practice for AYAs is therefore valuable, if not imperative, in improving their overall cancer experience. In this review, we aimed to describe the scope, benefits, and challenges of palliative care for AYA oncology patients. We provide a broad impression of the existing literature describing or investigating palliative care in this population. Put together, the evidence suggests that palliative care is not only needed, but can also be critically beneficial to patients, families, and health care professionals alike. As we increase public and professional awareness of the needs and applications of palliative care for AYA patients with cancer, we will ultimately enable better psychosocial outcomes of the AYA patients and their larger communities.

Children's Oncology Group's 2013 blueprint for research: Adolescent and young adult oncology

The discipline of Adolescent and Young Adult (AYA) Oncology addresses compelling medical and psychosocial needs of AYA patients across the spectrum of cancer survivorship. To be successful, extraordinary collaboration involving multiple scientific disciplines and specialties is required. While AYA Oncology is international in scope, recent AYA-focused studies conducted in the Children's Oncology Group (COG) have documented survival disparities, toxicity differences, and biological insights that provide the basis for new COG trials and initiatives for this population. This experience will be useful in leveraging the new United States National Cancer Institute Clinical Trials Network to transform AYA Oncology research.

Reproductive health in the adolescent and young adult cancer patient: an innovative training program for oncology nurses.

In 2008, approximately 69,200 adolescents and young adults (AYAs) were diagnosed with cancer, second only to heart disease for males in this age group. Despite recent guidelines from professional organizations and clinical research that AYA oncology patients want information about reproductive health topics and physician support for nurses to address these issues with patients, existing research finds few oncology nurses discuss this topic with patients due to barriers such as lack of training. This article describes an innovative eLearning training program, entitled Educating Nurses about Reproductive Issues in Cancer Healthcare. The threefold purpose of this article is to: (1) highlight major reproductive health concerns relevant to cancer patients, (2) describe the current status of reproductive health and oncology communication and the target audience for the training, and (3) present a systematic approach to curriculum development, including the content analysis and design stages as well as the utilization of feedback from a panel of experts. The resulting 10-week curriculum contains a broad-based approach to reproductive health communication aimed at creating individual- and practice-level change.

The need for reproductive and sexual health discussions with adolescent and young adult cancer patients

Reproductive health consistently ranks as one of the most important issues cited by adolescent and young adult (AYA) cancer survivors. Most literature on AYA cancer populations neglects broader reproductive health issues such as unintended pregnancies, contraception use and sexually transmitted infections, which, for cancer patients and survivors with compromised immune systems, can facilitate a multitude of future health problems. Lack of attention coupled with traditional risk-taking behaviors of AYAs poses a significant health risk to patients and survivors, particularly if fertility status is unknown or inaccurately assessed. AYA oncology patients and survivors are vulnerable to reproductive health complications that should be addressed prior to, during and after treatment; however, there are currently no tracking systems or evidence-based guidelines to discuss this subject with patients and survivors. Further research is needed to identify physician practices, AYA preferences and strategies for communication that can pave the way to establishing guidelines to discuss in oncology settings.

Improved clinical trial enrollment in adolescent and young adult (AYA) oncology patients after the establishment of an AYA oncology program uniting pediatric and medical oncology divisions

Since 1975, there has been a dramatic increase in the survival rates of pediatric and older cancer patients, but adolescent and young adult (AYA) patients ages 15 to 40 years have not had a similar improvement. Data indicate a direct correlation between increased cure rates and clinical trial enrollment. The authors previously published data indicating inferior clinical trial enrollment when AYA patients were treated at an adult oncology center versus a pediatric oncology center. To address this deficit, a joint pediatric and adult AYA Oncology Program was established in July 2006 with the primary objective of improving outcomes by increasing therapeutic clinical trial enrollment in this population. Patients who were referred to that program from July 2006 through June 2010 were examined retrospectively to establish whether clinical trial enrollment increased compared with historic controls. Fifty-seven patients were referred to the program from 2006 to 2010 (range, 12-16 new patients per year). Eight patients were referred for consultation only and were not treated at the University of Pittsburgh Cancer Institute or Children's Hospital of Pittsburgh. Five of 22 patients (23%) who received treatment at the pediatric cancer center were enrolled onto a clinical trial, whereas 9 of 27 patients (33%) patients who received treatment at the adult cancer center were enrolled. There was superior trial participation compared with the previous 3 years for those shared AYA patients who were treated at the adult center (P < .001). Data from this study demonstrated that establishing a unified AYA oncology program can lead to improved clinical trial enrollment for patients who are treated at medical oncology centers.

Practices and Resources Devoted to the Care of Adolescents and Young Adults with Cancer in Canada: A Survey of Pediatric and Adult Cancer Treatment Centers.

Adolescents and young adults (AYAs) with cancer are a population of patients facing disparities of care affecting quality of life and other health outcomes. Our objective was to document the current environment, resources, and services available to and challenges in the care of these patients in Canada. A questionnaire was developed with separate versions for pediatric and adult cancer centers. We invited one individual from every healthcare center providing cancer care in Canada to complete the questionnaire on behalf of his or her center. The survey included questions about referral patterns, diagnosis, treatment options, the nature of the challenges faced when treating AYAs with cancer, collaborative initiatives between pediatric and adult oncologists, and the presence of dedicated AYA resources and staff. We identified a lack of resources, staff, and collaborative activities dedicated to AYAs with cancer throughout Canada, both in pediatric and adult centers. Adult medical oncologists reported experiencing different challenges in treating AYAs with cancer compared to pediatric practitioners. Efforts to enhance AYA oncology care, including better resources and staffing and improved collaboration between pediatric and adult centers, are required.

Challenges Conducting Qualitative Psychosocial Research for Adolescent and Young Adult Patients and Survivors.

The field of adolescent and young adult oncology (AYAO) is developing and evolving, providing fertile ground for debate, discussion, and the exchange of opinions. In the "Controversies" feature of each issue of Journal of Adolescent and Young Adult Oncology, we will pose a key AYAO question to people from various organizations, geographical locations, and professions. In this issue, we asked respondents about the challenges they encounter conducting qualitative psychosocial research for AYA patients and survivors. -Editors.

Primary care referral patterns for adolescent and young adult (AYA) cancer patients: A multistate study.

e16626 Background: Cancer patients in late adolescence and young adulthood may be referred for treatment to either pediatric or medical oncologists; research is exploring the impact of specialty and treatment regimen on outcomes. Recognizing the role of the initial referral decision by the primary care physician (PCP), we sought to determine physician and patient factors that influence referral patterns of AYA oncology patients. Methods: Surveys were mailed to 1129 PCPs: 50% pediatricians, 50% non-pediatricians with representative distribution of Family Medicine, Internal Medicine, General Practice, Emergency Medicine, Gynecology in North Carolina (NC) and Washington (WA). PCPs provided demographics, then reviewed hypothetical patient vignettes that independently varied 8 patient factors by fractional factorial design: age (13-22), gender, diagnosis, race, social support, insurance, transportation, patient preference for site of care, and denoted to whom (pediatric or non-pediatric oncologist) they would refer the patient. Results: Response rate was 33.2% in NC and 38.6% in WA, totaling 406 completed surveys. By univariate and multivariate analysis, the only significant PCP characteristic was specialty; referral to a pediatric oncologist was made in 60% of vignettes by pediatric PCPs and 36.5% of non-pediatrician PCPs (p-value < 0.0001). Regardless of PCP specialty, referral patterns shifted with patient age: 89% of 13 year olds (yo), 74% of 16 yo, 25% of 19 yo and 9% of 22 yo were referred to pediatric oncologists. Compared to germ cell tumors, acute lymphoblastic leukemia (OR = 4.29; 95% CI: 2.77 - 6.64), Hodgkin’s lymphoma (OR = 3.88; 95% CI: 2.57 - 5.84), and Ewing’s sarcoma (OR = 4.77; 95% CI; 3.10 - 7.35) were more likely to be referred to a pediatric provider. Those lacking private insurance were more likely referred to pediatric oncologists (OR 1.42; 95% CI 1.09-1.87). Conclusions: PCP specialty, patient age, type of cancer and insurance status were significant drivers of referral patterns for AYA cancer patients. Referrals to pediatric oncology drop dramatically over age 18. Because site of oncologic care can impact outcomes, awareness and education efforts regarding AYA cancer should include PCPs.

Active therapy and models of care for adolescents and young adults with cancer

The reduction in the cancer mortality rate in adolescents and young adults (AYA) with cancer has lagged behind the reduction noted in children and older adults. Studies investigating reasons for this are limited but causes appear to be multifactorial. Host factors such as developmental stage, compliance, and tolerance to therapy; provider factors such as lack of awareness of cancer in AYA and referral patterns; differences in disease biology and treatment strategies; low accrual onto clinical trials; and lack of psychosocial support and education programs for AYA all likely play a role. Recommendations for change from a recent international workshop include education of physicians and patients concerning AYA cancer, improved cooperation between pediatric and adult centers, age-appropriate psychosocial support services, programs to help AYA with issues relevant to them, dedicated AYA hospital space, improved accrual to clinical trials, the use of technology to educate patients and enhance communication between patients and the health care team, and ensuring that resident and fellowship training programs provide adequate education in AYA oncology. The longer term goal is to develop AYA oncology into a distinct subspecialist discipline within oncology. The ideal model of care would incorporate medical care, psychosocial support services, and a physical environment that are age-appropriate. When this is not feasible, the development of "virtual units" connecting patients to the health care team or a combination of physical and virtual models are alternative options. The assessment of outcome measures is necessary to determine whether the interventions implemented result in improved survival and better quality of life, and are cost-effective.

Preamble

As is increasingly being recognized, the needs of adolescents and young adults (AYA) with cancer are poorly met met by the conventional dichotomy of the pediatric and adult health care systems, resulting in delays in diagnosis, low participation rates in clinical trials, lack of age‐appropriate care, concerns about social support during therapy, and long‐term psychosocial and other challenges in survivorship. It is the authors' firm belief that the deliberations at the workshop and its attendant activities will be informative and useful for colleagues beyond Canada as the network of communication in AYA oncology continues to grow.

Awareness and advocacy for adolescents and young adults with cancer

Increasing the awareness of the clinical and psychosocial needs that are particular to adolescents and young adults (AYA) was a top priority, as was strengthening advocacy efforts to empower and support this group. To date, AYA advocates had some success in generating public awareness and building a solid clinical justification for increased focus on this population. It had been established that the economic burden of their mortality was significant, their cancers were unusual, their medical care was often inadequate, and their outcomes for many cancers had not improved in the past 3 decades. As the awareness and advocacy campaign continued to grow and evolve across the globe, it was an important goal to integrate the efforts of all stakeholders to ensure that it progressed with a single, consensual, focused message identifying a common priority for action. By coordinating the efforts of the scientific, medical, and advocacy communities, it was possible to amplify their separate efforts and activities and more efficiently achieve large-scale change in the world of AYA oncology.

Unique Characteristics of Adolescent and Young Adult Acute Lymphoblastic Leukemia, Breast Cancer, and Colon Cancer

Each year in the United States, nearly 70 000 individuals between the ages of 15 and 40 years are diagnosed with cancer. Although overall cancer survival rates among pediatric and older adult patients have increased in recent decades, there has been little improvement in survival of adolescent and young adult (AYA) cancer patients since 1975 when collected data became adequate to evaluate this issue. In 2006, the AYA Oncology Progress Review Group made recommendations for addressing the needs of this population that were later implemented by the LIVESTRONG Young Adult Alliance. One of their overriding questions was whether the cancers seen in AYA patients were biologically different than the same cancers in adult and/or pediatric patients. On June 9-10, 2009, the National Cancer Institute (NCI) and the Lance Armstrong Foundation (LAF) convened a workshop in Bethesda, MD, entitled "Unique Characteristics of AYA Cancers: Focus on Acute Lymphocytic Leukemia (ALL), Breast Cancer and Colon Cancer" that aimed to examine the current state of basic and translational research on these cancers and to discuss the next steps to improve their prognosis and treatment.

What Should the Age Range Be for AYA Oncology?

What Should the Age Range Be for AYA Oncology?

Trailblazers in Adolescent and Young Adult Oncology.

The development of adolescent and young adult (AYA) oncology as a burgeoning discipline that is now into its own adolescence may be best illustrated by the surge in AYA oncology publications in peer-reviewed journals during the past three years. Prior to 2007, the number of articles identified by the search term ‘‘adolescents young adults cancer’’ in the PubMed database ranged from 129 to 381 per year. Since then, the number increased to 598 in 2007, 1971 in 2008, and 4045 in 2009. The dramatic increase is still well short of the 7000–7500 articles per year that the ‘‘children cancer’’ search term identifies, especially when one considers that the number of cancer patients in the AYA age group is four to six times greater, depending on what age range is used for the AYA group. Nonetheless, the change in publication rate of AYA cancer reports and reviews is striking testimony of need and partial success. To understand the history that led to this revolution, several of its pioneers in England, the United States, and Canada were convened for a roundtable discussion to offer their recall. As described below, the original seed appears to have been sowed in England, thanks to Ian Lewis and London’s Teenage Cancer Trust. A root took hold a decade later when national statistics in the United States showed a survival progress gap that was analogized to the famous London Tube gap between the platform and the Underground train. The stems that then broke ground were conferences, organizations, hospital and outpatient programs, scientific reviews, and international collaborations. The participants in this Roundtable undoubtedly neglected many other events along the way, but they are all appreciative of the emerging buds and blossoms of AYA oncology. Most of all, they sense that AYAs around the world will ultimately truly benefit in improved prevention, early detection, and treatment of cancer during the prime of their lives.

A New Journal to Improve Care for Adolescent and Young Adult Oncology Patients and Survivors.

A New Journal to Improve Care for Adolescent and Young Adult Oncology Patients and Survivors.

The History and Accomplishments of the LIVESTRONG Young Adult Alliance.

This article outlines the history, background, and accomplishments of the LIVESTRONG Young Adult Alliance. The LIVESTRONG Young Adult Alliance, a program of the Lance Armstrong Foundation, was developed as a vehicle for a strategic plan designed to implement the Adolescent and Young Adult Oncology Progress Review Group (AYAO PRG) recommendations. The AYAO PRG was co-sponsored by Lance Armstrong Foundation and the National Cancer Institute (NCI); both LIVESTRONG and NCI provide strategic oversight and guidance to the Alliance. Highlights and accomplishments: The Alliance accomplishments include the publication of disease-specific retrospective analyses, funding of an AYA cohort study and biorepository proposal, publication of two position statements on guidelines for care of AYAs with cancer and training for AYA oncology health professionals, promotion of an international charter of rights for AYA cancer patients, creation and distribution of a survey to college health professionals, creation and implementation of a Cancer Centers Working Group and Institutional Review Board Toolkit, and continued growth and collaboration through an annual meeting. The growth and success of the Alliance has coincided with the growth of AYA oncology as a field. The collaborative environment of the Alliance draws together a diverse group of individuals united in the effort to increase survival rates and improve the quality of life for adolescents and young adults diagnosed with cancer.

The relationship between unmet needs and distress amongst young people with cancer

Most psychosocial research in cancer has been restricted to paediatric or older adult populations. This study aimed to explore psychological distress and unmet needs in adolescents and young adults (AYA) with cancer and identify predictors of distress among demographic and illness characteristics and supportive care needs. Fifty-three patients between 16 and 30 years completed a cross-sectional survey, administered shortly after presentation to an AYA oncology service and within 4 months of diagnosis. Measures included the Beck Depression Inventory-Fast Screen (BDI-FS), State-Trait Anxiety Inventory-State Form (STAI-S) and the Supportive Care Needs Survey. Level of distress-related sypmtomatology in this population was based on previous work, whereby a cut-off score of 4 or greater was used for the BDI-FS, and one standard deviation above the sample population mean was used for the STAI-S. Prevalence of distress (25%) was lower than that found previously in AYA with cancer. Physical and daily living needs were the most frequently unmet needs overall, followed by psychological needs, health system and information needs and care and support needs. Lastly, being pre-treatment predicted increased depression and state anxiety, while having treatment post-surgery predicted reduced state anxiety. After controlling for treatment status, however, the main predictors of depression and state anxiety were physical and daily living needs and health system and information needs, respectively. Lower levels of distress and unmet psychological needs were related to the few participants (17%) in this study who were pre-treatment, when distress was most likely. However, physical needs and information needs, which are almost inevitable throughout treatment and beyond, were more important predictors of distress. Further exploration must consider the psychosocial difficulties underlying this association and the needs of AYA at transitions between critical periods in their cancer journey (i.e., upon diagnosis, during treatment, etc.).

Quality Cancer Care for Adolescents and Young Adults: A Position Statement

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. 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. 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. 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.