Purpose: Improvements in outcomes for adolescent and young adult (AYA) oncology patients have lagged behind those of other age-specific cancer populations. Research has indicated that low availability of clinical trials, biological differences of this age-group, and several psychosocial factors including higher emotional distress impact outcomes. To improve care and survival rates for these patients, hospitals have implemented AYA oncology programs. The current study evaluated documentation of care in an AYA program housed in an academic medical center based on three areas emphasized in the National Comprehensive Cancer Network\'s Clinical Practice Guidelines in Oncology for AYAs: clinical trial enrollment, fertility, and psychosocial care. Methods: Retrospective chart reviews were conducted for 45 patients treated before the start of the AYA oncology program and 45 patients treated after program initiation. Patients aged 15-39 years with a diagnosis of a malignant tumor were included. Variables evaluated included documentation of clinical trial enrollment, fertility preservation and sexual health considerations, and behavioral health referrals. Results: Documentation of most clinical trial and fertility variables did not significantly improve from pre- to post-program, although a higher number of patients had these variables documented post-program. Behavioral health referrals increased significantly from 52.8% pre-program to 95.4% post-program. Conclusion: Access to behavioral health care improved the most following implementation of our AYA program, which is likely because of the integration of a dedicated psychologist for AYAs when the program began. The practice of guideline-based care for this population can be better assessed and improved with designated behavioral health providers and more systematic documentation processes.

BACKGROUND: Sociodemographic and clinical factors associated with diagnostic delays in pediatric, adolescent, and young adult cancers are poorly understood.
METHODS: Using the Optum Labs Data Warehouse\'s de-identified claims data for commercial health plan enrollees, we identified children (0-14 years) and adolescents/young adults (AYAs) (15-39 years) diagnosed with one of 10 common cancers from 2001 to 2017, who were continuously enrolled for 6 months preceding diagnosis. Time to diagnosis was calculated as days between first medical encounter with possible cancer symptoms and cancer diagnosis date. Median times from first symptom to diagnosis were compared using Wilcoxon rank sum test. Multivariable unconditional logistic regression identified sociodemographic factors associated with longer time (>3 months) to cancer diagnosis (from symptom onset).
RESULTS: Of 47,296 patients, 87% presented prior to diagnosis with symptoms. Patients with central nervous system (CNS) tumors were most likely to present with symptoms (93%), whereas patients with cervical cancer were least likely (70%). Symptoms varied by malignancy. Of patients with symptoms, thyroid (105 days [range: 50-154]) and cervical (104 days [range: 41-151]) cancer had the longest median time to diagnosis. Females and patients at either end of the age spectrum were more likely to experience diagnosis delays of more than 3 months.
CONCLUSIONS: In a commercially insured population, time to diagnosis varies by cancer type, age, and sex. Further work is needed to understand the patient, provider, and health system-level factors contributing to time from symptom onset to diagnosis, specifically in the very young children and the young adult patient population going forward.

This commentary focuses on the challenges and possibilities that adolescents and young adults with cancer (AYA) desiring parenthood face under Swiss law. The regulation of reproductive medicine procedures is stricter in Switzerland than in some other countries. Health insurance is compulsory, but the interventions that are covered are in constant flux. Recent changes pertain to the possibilities of future AYA parenthood and keeping up to date with practical and legal ramifications is taxing even for health professionals. AYA facing treatment decisions are uniquely vulnerable and dependent on comprehensive, clear, current, and country-specific information regarding risks and options pertaining to their fertility. This commentary provides a short overview of the Swiss legal framework related to reproductive medicine, highlighting its access restrictions and prohibitions, as well as recent changes. While the importance of patient, peer, caregiver, and interest groups supporting people affected by health conditions has long been recognized in many countries, an AYA organization was only recently established in Switzerland. Such organizations are vital for providing accurate, country-specific information and support, while individualized medical guidance, informed by the most current legal framework and its consequences, remains essential in addressing AYAs\' specific needs in connection with the desire to have children.

Oncofertility is an emerging field that incorporates diverse disciplines working together to care for oncology patients from birth to adulthood who are facing surgery, radiation therapy, or chemotherapy that may impact their fertility potential and reproductive function. Providing this care to newly diagnosed oncology patients in an expedited manner can be challenging. There is currently a paucity of published data about how this care is provided, training and education of individuals providing this care, and patient-reported outcomes related specifically to oncofertility care. The role of the oncofertility patient navigator is to bridge the institutional and disciplinary boundaries so oncology patients of all ages can receive timely information regarding fertility risk and preservation options at diagnosis and throughout survivorship care. The purpose of this paper is to define the role of the oncofertility patient navigator within diverse models of care and health care systems, and provide a framework for ongoing efforts to improve reproductive care for those affected by cancer in their years of child-bearing potential.

Purpose: Every year, nearly 100,000 adolescents and young adults (15-39 years, AYAs) are diagnosed with cancer in the United States and many have unmet physical, psychosocial, and practical needs during and after cancer treatment. In response to demands for improved cancer care delivery for this population, specialized AYA cancer programs have emerged across the country. However, cancer centers face multilevel barriers to developing and implementing AYA cancer programs and would benefit from more robust guidance on how to approach AYA program development. Methods: To contribute to this guidance, we describe the development of an AYA cancer program at the University of North Carolina (UNC) Lineberger Comprehensive Cancer Center. Results: We summarize the evolution of UNC\'s AYA Cancer Program since it was established in 2015, offering pragmatic strategies for developing, implementing, and sustaining AYA cancer programs. Conclusion: The development of the UNC AYA Cancer Program since 2015 has generated many lessons learned that we hope may be informative to other cancer centers seeking to build specialized services for AYAs.

BACKGROUND: We aimed to analyse health care services for adolescents and young adults (AYA) with sarcomas in Spain.
METHODS: A survey was sent to all Spanish cancer centres, including questions about demographic, facilities, and treatment strategies for AYAs with sarcomas in the last 2 years.
RESULTS: Thirty-five units participated in the survey, 17 paediatric and 15 adult units. There were three specialized AYA units. First line regimen varied depending on whether the treating unit was paediatric or not, for osteosarcomas, rhabdomyosarcomas, and non-rhabdomyosarcomas. By contrast, 91.4% of Ewing sarcomas were treated according to EE2012. In the relapse setting, differences between units were higher in all tumours. Additionally, 48% of the units reported not having trials for this population.
CONCLUSIONS: There are major differences in the treatment of AYAs with sarcomas between adult and paediatric units. Enormous efforts are needed to homogenize treatments and increase the access to innovation.

Patient input is critical for all aspects of value-based healthcare design. This contribution describes the following: the specifics of communications with doctors regarding the disease in adolescents and young adults with cancer; the patients\' thoughts, emotions and changes in self-perception; \"other meanings\" taking shape along the treatment pathway; and reacting modes to the disease and treatments. Thirty-five Italian AYA patients in follow-up (age 18-24) were involved in a plenary interview on the cited aspects of their oncological experience. The answers were analyzed by MADIT (Analysis Methodology of Computerized Textual Data) with the software SPAD. MADIT allowed us to perform text analysis, describe the graphical outcomes and discuss the results. Respondents took a first-person perspective and their personal narrative recall had objective and unequivocal connotations. Experience was narrated mainly by maintenance repertoires that fix the reality of disease, its treatments and personal identity. The account focused on the tumor and on an agreed approach to it. The time \"after\" was described as a distressing space that defines them. Making sense of the events was considered a significant help. Professionals need to focus on the discursive repertoires of communication with which the inner and outer reality are built. Lastly, these patients required a two-way dialogue throughout the entire caring process.

Survival for childhood cancers has improved significantly over the last decades. However, patient outcomes have plateaued over the last decade for difficult-to-treat diseases. With high cure rates, decreasing long-term toxicities and sequelae remains crucial. Since many advances in childhood cancer research come from the adult oncology world, one of the key areas is improving the adaptation of tools that are essential for clinical trial conduct that were developed for adults into pediatrics. These include tools to evaluate toxicity, quality of life, radiological response, statistical methodology, or indicators of cancer care quality. In this review, we present ongoing international efforts to validate and adapt these tools for children and adolescents and discuss remaining challenges. These efforts will hopefully accelerate and improve the quality of pediatric oncology research in the upcoming years.

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OBJECTIVE: To examine whether the rates of thrombosis in children (≤14 years of age) and adolescent/young adult (AYA) patients (15-22 years of age) with cancer is different.
METHODS: We retrospectively studied the rates of thrombosis in children and AYA patients at the Children\'s Hospital of Pittsburgh during the years 2002-2010, using the tumor registry database. This list was then divided into two groups based on age at diagnosis. A review of ICD-9 codes from hospital billing records was then performed to identify patients who carried diagnoses of cancer (140.x-239.x) and venous thrombosis of the extremities/vena cavae (453.x) simultaneously. This list was confirmed by electronic medical record review. Proportions, comparisons, and descriptive statistics were then performed.
RESULTS: One thousand three hundred nine total patients were identified; 274 patients fit into the AYA age category (mean age 17.3 years) and 1036 patients were in the child group (mean age 6.5 years). Overall, 30 patients (2.29%) had thrombosis: 4.76% of the AYA patients (13/273) and 1.64% of the child group (17/1036). The difference in these proportions had a p-value = 0.004.
CONCLUSIONS: This study suggests that the risk of extremity deep vein thrombosis is higher in the AYA subset of oncology patients than in the patients who are 14 years or younger. Prospective studies to elucidate the true rate of thrombosis, as well as to study the benefit of prophylactic anticoagulation in the AYA population, should be undertaken.