Improving Cancer Survivorship for Adolescents and Young Adults (original) (raw)
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Adolescent and Young Adult Oncology
Clinical Journal of Oncology Nursing, 2013
Adolescent and young adult (AYA) oncology is caught between the pediatric and adult oncology settings and, therefore, poorly defined. Unfortunately, progress in overall survival for this age cohort has been stagnant while children and older adults have seen significant improvements. Reasons for the lack of progress are multifactorial, with biologic and psychosocial explanations. The current article will detail the unique features of AYA patients with cancer in terms of outcomes, psychosocial issues, and recommendations. Literature pertaining to AYA patients with cancer from 2006-2012 was reviewed. Findings suggested that recognizing AYAs as a subspecialty that requires holistic, multidisciplinary care may improve outcomes. Nurses at all levels are adept at providing holistic care and are, therefore, excellent potential advocates for a specialized care delivery model that AYAs with cancer deserve.
Long-Term Survivors of Cancer in Childhood and Adolescence
Current Pediatric Reviews, 2012
Significant improvements in the treatment of many pediatric malignancies have led to a growing population of long-term survivors of childhood cancer. Many of these survivors are at significant risk for late physical and psychosocial sequelae ("late effects") as a result of their prior disease and its therapy. In some survivors (such as children treated for a brain tumor), late effects including endocrine dysfunction and neurocognitive challenges can develop during therapy and persist throughout life. In others (such as children and adolescents treated for Hodgkin's lymphoma), late effects including congestive heart failure, pulmonary fibrosis and secondary breast cancers may not occur for many years, often once survivors have reached adulthood. During childhood, survivor care usually occurs at the pediatric cancer center, often in a specialized long-term follow-up clinic. However, adult survivors are usually cared for by primary care practitioners in their own communities. It is essential that the health care providers who will care for childhood cancer survivors as they age be aware of each survivor's treatment exposures, long-term risks, and the surveillance strategies suggested for monitoring for these late effects. Strategies for effective transition from pediatric care and for ongoing communication between primary care practitioners and pediatric cancer centers need to be implemented to ensure that childhood cancer survivors receive appropriate care focused on their specific risks throughout their lifespan.
Assessing the health care needs of adolescent and young adult cancer patients and survivors
Cancer, 2006
BACKGROUND.Improvements in cancer outcomes observed for the United States population as a whole are not experienced as such by adolescent and young adult (AYA) patients. The objective of this study was to identify important health and supportive care needs for AYA patients and survivors.Improvements in cancer outcomes observed for the United States population as a whole are not experienced as such by adolescent and young adult (AYA) patients. The objective of this study was to identify important health and supportive care needs for AYA patients and survivors.METHODS.Forty oncology health professionals and 37 young adults (ages 18 years to 44 years; diagnosed between ages 15 years and 39 years) participated on a modified Delphi panel. Over 3 iterative rounds of mailed surveys, participants identified, rank ordered, and rated the importance of various items.Forty oncology health professionals and 37 young adults (ages 18 years to 44 years; diagnosed between ages 15 years and 39 years) participated on a modified Delphi panel. Over 3 iterative rounds of mailed surveys, participants identified, rank ordered, and rated the importance of various items.RESULTS.Overall, there was general agreement among health care providers and young adult survivors, with some notable exceptions. Providers and young adult survivors agreed on the relative importance of having adequate health insurance and oncology care that addresses the unique developmental characteristics of this population. Compared with health professionals, young adults ranked the importance of opportunities to meet other young adult survivors at a relatively higher level, and they also ranked those opportunities higher than the importance of support from family and friends.Overall, there was general agreement among health care providers and young adult survivors, with some notable exceptions. Providers and young adult survivors agreed on the relative importance of having adequate health insurance and oncology care that addresses the unique developmental characteristics of this population. Compared with health professionals, young adults ranked the importance of opportunities to meet other young adult survivors at a relatively higher level, and they also ranked those opportunities higher than the importance of support from family and friends.CONCLUSIONS.These findings provide oncology professionals and young adults with insight into the others' values and perspectives. These findings also suggest areas in which to target investments of resources to promote quality health care and appropriate informational and supportive care services and to overcome the deficit in survival improvement that has occurred in young adults and older adolescents with cancer. Cancer 2006. © 2006 American Cancer Society.These findings provide oncology professionals and young adults with insight into the others' values and perspectives. These findings also suggest areas in which to target investments of resources to promote quality health care and appropriate informational and supportive care services and to overcome the deficit in survival improvement that has occurred in young adults and older adolescents with cancer. Cancer 2006. © 2006 American Cancer Society.
Adolescents and Young Adults Living With an Uncertain or Poor Cancer Prognosis: The “New” Lost Tribe
Journal of the National Comprehensive Cancer Network
Historically, adolescent and young adult (AYA) patients with cancer, diagnosed for the first time at age 15 through 39 years, have often been identified as a “lost tribe” without a medical “home”; neither pediatric nor adult oncology services were able to provide age-appropriate care to this specific group. Internationally, AYA care programs are being established to bridge the gap between the age-defined healthcare worlds and to address the specific needs of AYAs with cancer. However, AYA care programs mostly focus on improving cure rates and addressing survivorship issues, and direct less attention to the unique needs of those living with an uncertain and/or poor cancer prognosis. Additionally, palliative care services are typically poorly equipped to address the age-specific needs of this group. Given that increasingly more AYAs with an uncertain and/or poor cancer prognosis are gaining life years because of novel treatments, and sometimes even face the prospect of long-term disea...
Adult Survivors of Childhood Cancer
Psycho-Oncology, 2010
Approximately 80% of childhood cancer patients become survivors in need of long-term follow-up for the monitoring and management of residual and late-onset sequelae of their cancer diagnosis and its treatment. Late effects include any physical and/or psychological outcome that develops and/or persists beyond 5 years from the diagnosis of cancer. Childhood cancer survivors often have difficulty accepting their post-therapy health risks and their therapy-related physical and neurocognitive limitations. Parents have reported a consistently poorer health-related quality of life for their childhood cancer survivor than population controls of the same age and sex. Although late effects are frequent and can be serious for the childhood cancer survivor, the implementation of risk-based care and the education of care providers in the early recognition of long-term sequelae offers opportunity for intervention and improved outcomes. Although the pediatric oncologist remains an integral part of the survivor's care plan, the primary care physician is essential in the ongoing care of the survivor. Efforts to provide resources and educate all care providers remain an important part of the process.
Pediatric Blood & Cancer, 2019
The first decade of AYA oncology psychosocial care and research (2005-2015) was driven by a normative, developmental framework that assumed a generalizable life experience for AYAs that is distinct from both younger children and older adults. As we proceed through a second decade, new considerations emerge regarding diversity of life experiences as occurring within and influenced by a complex global context. The purpose of this paper is to review and provide commentary on the impact of global and contextual conditions on AYAs. We expound upon the effects of precarious labor conditions, changing timetables and priorities for developmental tasks, sexual and gender plurality, and expanding cultural diversity. We discuss the implications of social genomics and technology and social media for enhancing precision psychosocial medicine. To build a forwardlooking approach, this paper calls for tailored, multilevel treatments that consider variability of AYAs within the social and global contexts in which they live.