Abstract:
PURPOSE:An insufficient transition to normal life after cancer treatment in adolescent and young adults (AYAs) may lead to decreased occupational and educational opportunities throughout a survivor's lifespan. Key informant interviews were used to access unique knowledge of the healthcare, educational, and social systems. METHODS:We used key informant interviews with professionals representing disciplines from healthcare, educational, and social systems (n = 15). Informants were recruited through purposive sampling and snowball sampling. Interviews were analyzed thematically using Malterud's Systematic Text Condensation and verified by member checking. RESULTS:We found four major themes: the impact of late effects, navigating the system, social reintegration, and the drive of youth. Although legal frameworks are often in place to assist AYA cancer survivors, navigating the public, educational, and social systems is a complex task and many AYAs do not have the required skill set or energy. Furthermore, AYA survivors often feel different from their peers and misunderstood by their surroundings, which may hinder reintegration into normal social life. CONCLUSIONS:In Scandinavia, healthcare and education are free of charge with equal access for all, primarily funded by government taxes. Therefore, insurance status and tuition fees should not constitute barriers for returning to education and work. However, this study finds that the public and educational systems are complex to navigate, and that AYAs face trouble mobilizing the energy to receive needed support.
journal_name
J Adolesc Young Adult Oncoljournal_title
Journal of adolescent and young adult oncologyauthors
Pedersen KJ,Boisen KA,Midtgaard J,Elsbernd A,Larsen HBdoi
10.1089/jayao.2017.0128subject
Has Abstractpub_date
2018-08-01 00:00:00pages
445-452issue
4eissn
2156-5333issn
2156-535Xjournal_volume
7pub_type
杂志文章abstract:PURPOSE:Limited research exists on the social information needs of adolescents and young adults (AYAs, aged 15-39 at diagnosis) with cancer. METHODS:The Adolescent and Young Adult Health Outcomes and Patient Experiences (AYA HOPE) Study recruited 523 patients to complete surveys 6-14 months after cancer diagnosis. Par...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2012.0029
更新日期:2013-06-01 00:00:00
abstract:PURPOSE:As many as two-thirds of male childhood cancer survivors are at risk for fertility impairment as a consequence of treatment. Despite this, survivorship guidelines lack concrete recommendations as to when fertility status conversations should happen between patients and providers and what should be discussed. Th...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2018.0094
更新日期:2019-02-01 00:00:00
abstract:: Purpose: Survivors of cancer diagnosed during adolescence and young adulthood (AYA; aged 15-39) may experience quality of life (QOL) limitations; however, little is known about QOL for AYA survivors who are now middle-aged or among racial/ethnic minority survivors. We eval...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2013.0035
更新日期:2014-06-01 00:00:00
abstract::Radiation-induced phantosmia has been reported both in children and adults. A fraction of these patients have nausea and vomiting triggered by phantosmia. Radiation-induced phantosmia, although transient, can be distressing enough to prevent a patient from staying still during radiation therapy. To date, specific inte...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2019.0103
更新日期:2020-04-01 00:00:00
abstract:PURPOSE:There is a growing interest in fertility preservation as emerging research is highlighting the prevalence of infertility among young cancer survivors and its negative impact on quality of life. Previous qualitative research has identified barriers of fertility preservation care among professionals. The aim of t...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2016.0087
更新日期:2017-09-01 00:00:00
abstract:: Background: The increase in breast cancer (BC) cases in young women is of great importance since the tumor behavior in this group is generally more aggressive than in their older counterparts, and strategies for early diagnosis and prognostication are needed. Therefore, th...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2020.0037
更新日期:2020-07-21 00:00:00
abstract::Adolescents and young adults (AYAs) 15-39 years old face unique challenges during cancer treatment as developmental and social needs are often disrupted to achieve cure. Developmentally appropriate supportive care for AYAs across the cancer trajectory is needed. The purpose of this review is to identify and describe i...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章,评审
doi:10.1089/jayao.2017.0127
更新日期:2018-06-01 00:00:00
abstract:: Purpose: Most evidence for the relationship between physical activity, nutrition education, and late effects from cancer treatment come from cross-sectional studies. The purpose of this pilot study was to determine if 8 weeks of exercise and nutrition education in adolesce...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2020.0116
更新日期:2020-09-14 00:00:00
abstract:PURPOSE:To identify the utility and issues associated with the use of decision trees in oncofertility patient care in Japan. METHODS:A total of 35 women who had been diagnosed with cancer, but had not begun anticancer treatment, were enrolled. We applied the oncofertility decision tree for women published by Gardino e...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2016.0045
更新日期:2017-03-01 00:00:00
abstract:: Purpose: Rates of obesity and obesity-related health consequences, including type 2 diabetes (T2D) and cancer, continue to rise. While cancer patients are at an increased risk of developing T2D, the prevalence of T2D and insulin prescription among young patients with cance...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2020.0071
更新日期:2020-07-29 00:00:00
abstract::Fertility impairment and loss due to cancer or its treatment is a significant survivorship consideration for many pediatric, adolescent, and young adult cancer survivors. Chemotherapeutics, radiation, and surgery can impact the future fertility of men, women, and children with cancer. The field of oncofertility, found...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2012.0035
更新日期:2013-03-01 00:00:00
abstract::Adult hepatoblastoma (AHB) is a rare liver tumor with a poor prognosis in adolescents and adults. This contrasts with hepatoblastoma in children and is not fully understood. Here we describe two adolescents with AHB who were treated in our hospital. Adolescents are likely to receive less intensive chemotherapy protoco...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2017.0125
更新日期:2018-06-01 00:00:00
abstract::Delayed diagnosis due to lack of education may contribute to lack of improvement in adolescent and young adult (AYA) cancer survival. This program sought to educate trainees and AYAs in the community. The "Learning, Education, Awareness, Prevention (L.E.A.P) Young Adult Cancer" outreach program was developed to teach ...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2017.0060
更新日期:2018-02-01 00:00:00
abstract:: Purpose: To explore and highlight the opportunities and challenges that underlie the development of survivorship care for adolescent and young adult cancer. Methods: A multimethod approach was used, with perspectives of survivo...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2019.0031
更新日期:2019-10-01 00:00:00
abstract:: Purpose: With an increasing focus on developing survivorship services tailored for adolescent and young adult (AYA) cancer survivors, incorporation of viewpoints from both survivors and health care professionals (HCPs) is important. This study aims to explore the perceptio...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2019.0145
更新日期:2020-06-01 00:00:00
abstract::Based on an increased appreciation of the unique challenges facing adolescents and young adults with cancer, there has been a coordinated national effort in Australia in recent years to address this issue. In 2007, CanTeen, a consumer support organization for young people with cancer, partnered with the Australian fed...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2012.0032
更新日期:2013-09-01 00:00:00
abstract:PURPOSE:This study describes the prevalence of religious and/or spiritual (R/S) struggle in long-term young adult (YA) survivors following hematopoietic cell transplantation (HCT) as well as existential concerns (EC), social support, and demographic, medical, and emotional correlates of R/S struggle. METHODS:Data were...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2017.0069
更新日期:2018-04-01 00:00:00
abstract::This case study describes the use of patient-reported outcome (PRO) in conjunction with psychosocial treatment for an adolescent oncology patient presenting with comorbid mental health difficulties. A nine-session evidence-based cognitive-behavioral treatment was implemented and PROs were used to document progress. Re...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2017.0090
更新日期:2018-06-01 00:00:00
abstract:PURPOSE:Oncologic outcomes in advanced testicular cancer (TC) depend on appropriate and timely care. Often this care is referred to tertiary academic medical centers (AMCs). The aim of this study was to compare oncologic outcomes of adolescent and young adult (AYA) patients with TC treated from the outset at an AMC to ...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2015.0057
更新日期:2016-09-01 00:00:00
abstract::Little is known about young adults with cancer at the end-of-life, but life review and legacy making may be important modalities to process the emotions associated with anticipatory grief. The study analyzed the illness blogs of five young women (aged 25-39 years) at the end-of-life using a narrative approach. Key ele...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2015.0003
更新日期:2015-12-01 00:00:00
abstract::This review explores the literature on experiences of young people (15-39 years) living with cancer from nonmetropolitan areas, given most available research has focused on those living in major metropolitan areas. The purpose of the review was to inform (a) clinical practice and (b) future research on young people li...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2019.0053
更新日期:2020-04-01 00:00:00
abstract:PURPOSE:The aim of this study was to examine racial/ethnic disparities in the incidence rates and trends of soft tissue sarcoma (STS) by gender, age, and histological type among adolescents and young adults (AYAs) aged 15-29 years. METHODS:The 1995-2008 incidence data from 25 population-based cancer registries, coveri...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2012.0031
更新日期:2013-09-01 00:00:00
abstract:PURPOSE:To examine key factors related to adolescent cancer survivors' return to school after cancer treatment completion, which can be a time of complex transition. PATIENTS AND METHODS:Seventy semi-structured interviews were conducted with 19 adolescent cancer survivors (mean age 16.1 years), 21 mothers, 15 fathers,...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2011.0006
更新日期:2011-06-01 00:00:00
abstract:PURPOSE:As a consequence of cancer treatment, many adolescents and young adults (AYA) patients are required to take leave or face setbacks from their education. While most AYA cancer survivors and survivors of childhood cancer are capable of successfully returning to the educational system, unsuccessful returns place A...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2018.0058
更新日期:2018-10-01 00:00:00
abstract:PURPOSE:Cancer-related fatigue in adults has been the subject of considerable recent research, confirming its importance as a common and debilitating symptom, and establishing a number of evidence-based interventions. There has, however, been limited focus on the fatigue suffered by teenagers and young adults with canc...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章,评审
doi:10.1089/jayao.2014.0023
更新日期:2015-03-01 00:00:00
abstract:PURPOSE:Adolescents with cancer have unique developmental considerations. These include brain development, particularly in the frontal lobe, and a focus on completing education and entering the workforce. Cancer and treatment at this stage may prove to uniquely affect survivors' experience of cognitive and occupational...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2017.0043
更新日期:2018-02-01 00:00:00
abstract::This paper describes the development of an institution-specific website designed to meet the supportive and emotional needs of young adults (18-39 years old) with cancer in the United States. The website contains information about topics of particular interest to young adults, coping skills education, and resources; a...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2014.0035
更新日期:2015-03-01 00:00:00
abstract::The inclusion of asparaginase in chemotherapy regimens to treat acute lymphoblastic leukemia (ALL) has had a positive impact on survival in pediatric patients. Historically, asparaginase has been excluded from most treatment protocols for adolescent and young adult (AYA) patients because of perceived toxicity in this ...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章,评审
doi:10.1089/jayao.2015.0014
更新日期:2015-09-01 00:00:00
abstract::Following a presentation with abdominal pain, a 22-year-old female was diagnosed with a massive primary liver immature teratoma with evidence of omental and pelvic metastases. Despite chemotherapy, the teratoma continued to rapidly increase in size. Significant treatment-associated myelosuppression was challenging as ...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2019.0081
更新日期:2020-02-01 00:00:00
abstract:: Purpose: This study describes the prevalence trends of electronic cigarette (e-cigarette) use in young adult cancer survivors and compares these to the prevalence among young adults without a cancer history. It also examines the association between conventional cigarette u...
journal_title:Journal of adolescent and young adult oncology
pub_type: 杂志文章
doi:10.1089/jayao.2020.0104
更新日期:2020-09-30 00:00:00