A Practical Approach to the Care of Adolescents and Young Adults with Cancer (original) (raw)
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Adolescent and Young Adult Cancer: Principles of Care
Current Oncology, 2016
Adolescents and young adults (AYAS) with cancer in active treatment face a number of barriers to optimal care. In the present article, we focus on the 3 critical domains of care for ayas—medical, psychosocial, and research—and how changes to the system could overcome barriers. We summarize the current literature, outline recommended principles of care, raise awareness of barriers to optimal care, and suggest specific changes to the system to overcome those barriers in the Canadian context. Many of the recommendations can nevertheless be applied universally. These recommendations are endorsed by the Canadian Task Force on Adolescents and Young Adults with Cancer and build on outcomes from two international workshops held by that group.
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 qualitative evaluation of an adolescent cancer unit
European journal of cancer care, 2004
The Expert Advisory Group on Cancer (1995) recommended that cancer centres in the UK should make provision for adolescents with cancer. However, although their number is growing, only a small number of specialist adolescent cancer units currently exist, and teenagers may often be treated in more general settings. To date, no formal evaluation of adolescent cancer units has taken place. This study adopted a qualitative approach to evaluate the first specialist adolescent oncology unit, which was established in the UK 10 years ago. The aim was to provide insight into: the culture of the unit; the experiences of patients and parents on the unit and the staff who worked there; and how the unit was valued by these groups. Semi-structured interviews were conducted with 10 teenagers with cancer, 10 parents and 14 professionals. Systematic nonparticipant observation of routine activities in the unit was undertaken also. Interview transcripts and observational data were analysed to identify key themes and categories. Six categories emerged from the data:
Malignant disease and the adolescent
Journal of the Royal College of Physicians of London
M alignancy affects an estim ated 1 in 800 people in the age group 13-18. The m ost com m on diagnoses affecting teenagers and young adults in the UK are leukaem ia/lym phom a, prim ary brain tum our s and bone tum our s © The diagnosis and treatm ent of a life-threatening illness is likely to distur b and possibly arrest nor m al progress from dep endence to independence. Hence, the goal of all oncologists m ust be to cure the patient w ith m inim al mor bidity © Treatm ent in a specialist oncology unit w ill overcom e m any problem s, particularly in the early stages of treatm ent w hen the patient is com ing to term s w ith the diagnosis © There can be no definite cut-off for the patient to be best treated in an adult or paediatric hospital © Structured follow -up is essential to identify the tr ue effects of treatm ent, w hich m ay become fully apparent only later in life. In particular, the neuropsychological im pact of malignancy m ay be severely underest im ated K ey P oints
The care of adolescents and young adults with cancer: results of the ESMO/SIOPE survey
ESMO Open
What is already known about this subject? ► Little is known about the training, practice and needs of European healthcare providers in relation to care of adolescents and young adults (AYA) with cancer. What does this study add? ► This survey revealed important underprovision and inequity of specialised AYA cancer care across Europe. This was particularly evident in Eastern and SouthEastern Europe. How might this impact on clinical practice? ► AYA with cancer require particular clinical management and care in relation to fertility preservation and other treatment sequelae. Improving care through education and research focused on AYA should be a priority for both European Society for Medical Oncology and European Society for Paediatric Oncology.
The Lived Experiences of Adolescents with Cancer the Lived Experiences of Adolescents with Cancer
2009
People often do not want to hear, talk or read about cancer. Cancer is arguably one of the most feared illnesses and maybe rightly so for it is usually associated with pain, fear, uncertainty, anxiety, long uncomfortable treatments and death. To receive a diagnosis of cancer must be absolutely devastating especially when you are in a developmental stage where you are already battling with issues such as self-esteem, body image, independence and career choices. The current study explored the lived experiences of adolescents who have or had cancer and how this experience impacted on their lives. Six adolescent cancer patients from the cancer unit in a public hospital were interviewed. The sample was purposively drawn and the majority of the interviews were conducted at the homes of the participants. Phenomenology was used both as a theoretical framework as well as a means of analysing data. Using the descriptive phenomenological method employed by Giorgi, four essential themes emerged from the data. The themes included (1) Unexpected change of everyday life means experiencing the unfamiliar (2) Experiencing a changed body, (3) Experiencing the support of significant others and (4) Anticipating a future. The themes were explained in terms of the four existentials of Van Manen which is lived space, lived body, lived other and lived time. The study revealed that although the initial diagnosis of cancer came as a shock to the participants and their families, they were able to deal with the iv inevitable changes that accompanied the diagnosis mainly as a result of the support they received from family and friends. Their initial fear of death were replaced with an ardent pursue of their dreams for the future. November 2009 v DECLARATION I declare that The lived experiences of adolescents with cancer is my own work, that it has not been submitted before for any degree or examination in any other university, and that all the sources I have used or quoted have been indicated and acknowledged as complete references.
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
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...
The lived experiences of adolescents with cancer
2010
People often do not want to hear, talk or read about cancer. Cancer is arguably one of the most feared illnesses and maybe rightly so for it is usually associated with pain, fear, uncertainty, anxiety, long uncomfortable treatments and death. To receive a diagnosis of cancer must be absolutely devastating especially when you are in a developmental stage where you are already battling with issues such as self-esteem, body image, independence and career choices. The current study explored the lived experiences of adolescents who have or had cancer and how this experience impacted on their lives. Six adolescent cancer patients from the cancer unit in a public hospital were interviewed. The sample was purposively drawn and the majority of the interviews were conducted at the homes of the participants. Phenomenology was used both as a theoretical framework as well as a means of analysing data. Using the descriptive phenomenological method employed by Giorgi, four essential themes emerged from the data. The themes included (1) Unexpected change of everyday life means experiencing the unfamiliar (2) Experiencing a changed body, (3) Experiencing the support of significant others and (4) Anticipating a future. The themes were explained in terms of the four existentials of Van Manen which is lived space, lived body, lived other and lived time. The study revealed that although the initial diagnosis of cancer came as a shock to the participants and their families, they were able to deal with the iv inevitable changes that accompanied the diagnosis mainly as a result of the support they received from family and friends. Their initial fear of death were replaced with an ardent pursue of their dreams for the future. November 2009 v DECLARATION I declare that The lived experiences of adolescents with cancer is my own work, that it has not been submitted before for any degree or examination in any other university, and that all the sources I have used or quoted have been indicated and acknowledged as complete references.