Adolescent and Young Adult Cancer: Principles of Care (original) (raw)
Related papers
Canadian Medical Association Journal, 2010
C ancers in adolescents and young adults (aged 15-29 years) represent a transition between the nonepithelial types, especially acute leukemias and embryonal tumours, that are common during childhood and the epithelial types (i.e., carcinomas) that account for most cancers in older adults. The embryonal tumours that are common in children, such as neuroblastoma, Wilms tumour, retinoblastoma, medulloblastoma and hepatoblastoma, are rare among adolescents and young adults. Similarly, the most common carcinomas in older adults, such as lung, breast, prostate and colorectal cancers, have a much lower incidence among young people. The differences relative to other age groups is such that the classification system used to report cancer incidence in adolescents and young adults is a blend of those used for cancers in childhood and adult life. 1 Adolescents and young adults account for about 2% of all patients with a new diagnosis of invasive cancer in Canada. 2 Although the annual number of cases is small relative to those in older adults, a diagnosis of cancer during adolescence or young adulthood can have a major impact on future quality of life and life expectancy, as well as disrupting normal trajectories of development (e.g., physical, psychological and social) and life goals related to family and careers. 3 Selfimage among young cancer patients can be compromised by the adverse effects of therapy (e.g., loss of hair, gain or loss of weight, impairment of sexuality, mutilating surgery). Social relationships are also challenged by the strain caused by a diagnosis of cancer and subsequent therapy. Medical professionals are often ill-equipped to deal with the psychosocial challenges faced by young people with cancer. Our objective was to examine current Canadian data on cancer in adolescents and young adults and to review the literature on the obstacles that patients in this age group face in receiving adequate care. Methods We obtained cancer incidence data from the July 2009 version of the Canadian Cancer Registry, a dynamic, populationbased database maintained by Statistics Canada. The Canadian Cancer Registry contains information on cases diagnosed from 1992 onward, based on reports from every provincial and territorial cancer registry. Cases from this database are routinely linked at the national level to identify persons with more than one primary tumour. We classified incident cancers in adolescents and young adults according to the morphology-based classification system proposed by Birch and colleagues. 4 This system uses 10 major diagnostic groups defined by the International Classification of Diseases for Oncology morphology codes. We obtained mortality data from the Canadian Vital Statistics-Death Database, also maintained by Statistics Canada. These data are based on information provided by the vital statistics registrars in each province and territory. We obtained population estimates from Statistics Canada's Demographics Estimates Compendium 2008. 5 We report here the number of new cancer cases for the most recent five years of available data (2002-2006). Incidence rates were available for 1992-2006, and we examined overall trends, as well as trends for individual cancers, for the period 1997-2006 (i.e., the most recent 10 years of available data). We report the number of deaths for the most recent five years of data (2001-2005). Mortality rates were available for
Quality Cancer Care for Adolescents and Young Adults: A Position Statement
Journal of Clinical Oncology, 2010
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 re...
The oncologist, 2015
Cancer is the leading disease-related cause of death in adolescents and young adults (AYAs). This population faces many short- and long-term health and psychosocial consequences of cancer diagnosis and treatment, but many programs for cancer treatment, survivorship care, and psychosocial support do not focus on the specific needs of AYA cancer patients. Recognizing this health care disparity, the National Cancer Policy Forum of the Institute of Medicine convened a public workshop to examine the needs of AYA patients with cancer. Workshop participants identified many gaps and challenges in the care of AYA cancer patients and discussed potential strategies to address these needs. Suggestions included ways to improve access to care for AYAs, to deliver cancer care that better meets the medical and psychosocial needs of AYAs, to develop educational programs for providers who care for AYA cancer survivors, and to enhance the evidence base for AYAs with cancer by facilitating participatio...
Active therapy and models of care for adolescents and young adults with cancer
Cancer, 2011
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.
A Practical Approach to the Care of Adolescents and Young Adults with Cancer
2018
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Pediatric blood & cancer, 2019
Historically, adolescents and young adults (AYA) diagnosed with cancer have been an understudied population, and their unique care experiences, needs, and outcomes were not well understood. Thus, 10 years ago, the National Cancer Institute supported the fielding of the Adolescent and Young Adult Health Outcomes and Patient Experiences (AYA HOPE) study to address this gap. We recruited individuals diagnosed at ages 15 to 39 with germ cell, Hodgkin and non-Hodgkin lymphoma, acute lymphoblastic leukemia, and sarcoma from Surveillance, Epidemiology, and End Results cancer registries into the first multicenter population-based study of medical care, physical, and mental health outcomes for AYAs with cancer in the United States. This review of the 17 published manuscripts showed low awareness of clinical trials and substantial impact of cancer on financial burden, education and work, relationships and family planning, and physical and mental health. It highlights the feasibility of a long...
Psychosocial Care of Adolescent and Young Adult Patients With Cancer and Survivors
Journal of Clinical Oncology, 2012
The delivery of quality care for adolescent and young adult (AYA) patients with cancer and survivors requires an understanding of the unique qualities of this group—the shared norms, attitudes, and beliefs that determine their behavior as well as the unique stresses they face on a day-to-day basis. All AYAs have typical concerns about being comfortable with who they are and who they want to become (identity development, including sexual identity), their bodies (body image), initiating intimate and emotional relationships, separating from parents, and making independent decisions about future goals such as career, higher education, and/or family (autonomy). Yet efforts of AYA patients with cancer and survivors to mature are often confounded by restrictions and limitations placed on them by their disease and treatment. This article promotes understanding of psychosocial challenges faced by AYAs when diagnosed with and treated for cancer. It reviews evidence-based psychosocial support ...
Journal of Adolescent and Young Adult Oncology
Purpose: Adolescents and young adults (AYAs) with cancer are in a unique situation due to their age and developmental stage in life and may have different symptoms and concerns than older patients. Patient-Reported Outcomes (PROs) questionnaires, routinely used in Alberta, can help identify the distinct needs of AYAs. We aimed to compare PROs data for AYAs and older adults (OAs) to better understand how the concerns of AYAs differ, which is key to providing individualized care and creating targeted programming and system-level change. Methods: Retrospective data were collected for two patient cohorts who completed at least one PROs questionnaire between October 1, 2019 and April 1, 2020. The AYA cohort was aged 18-39, and the OA cohort was aged 40 and older. Symptoms were compared using mean scores and multiple linear regression, and concerns were compared using counts and multivariate negative binomial regression. Results: AYAs had significantly higher mean scores on depression and anxiety, compared to OAs, and lower mean scores for most physical symptoms. They indicated significantly more concerns in the Emotional and Social/Family/Spiritual domains, and were over three times more likely to indicate Work/School as a concern. Conclusion: AYAs with cancer have distinct concerns that should be addressed to ensure comprehensive, quality cancer care for this population. PROs data are useful in identifying needs and facilitating evidencebased, data-driven change at all levels of the health care system.
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...
Adolescent and young adult patients with cancer: a milieu of unique features
Nature Reviews Clinical Oncology, 2015
Background: Adolescent and young adults with cancer (AYACs) face unique medical, psychosocial, and supportive care needs. The purpose of this study was to identify AYACs perceptions and expectations of cancer care services on and off treatment. Methods: Semistructured interviews were conducted with 23 AYACs aged 19-38 years (13 on and 10 off treatment), who were receiving care at a comprehensive cancer center. Verbatim transcripts were created from audiotaped interviews and hand coded using inductive content analysis methodology. Results: Perceptions of optimal care were reported by AYACs through two main themes as follows: perceived barriers and facilitators during treatment. Within each main theme were three subthemes, including perceived facilitators reported as the provision of social support, the website and patient portal, and the educational information provided by the cancer center. Younger female AYACs (age 19-31) on active treatment reported perceived barriers to optimal care related to the management of physical and mental health symptoms, while older patients (age 32 and up) on active treatment endorsed a fear of cancer returning. The third perceived barrier equally endorsed by patients both on and off treatment and across age ranges included limited assistance with financial issues. Conclusions: AYACs reported perceived barriers and facilitators to optimal care. Implications for these findings are discussed in the context of the importance of adding a patient navigator to the AYACs care team.