Journal of adolescent and young adult oncology最新文献

Background: Little is known about the barriers to care and resources needed for adolescents and young adults (AYAs, 15-39) with cancer in low- and middle-income countries, where most of these patients live. We aimed to address this gap through interviews with pediatric and adult hematologists/oncologists.

Methods: We enrolled physicians from nine countries in Central America, Mexico, the Caribbean, and Peru. Semistructured interviews were conducted in Spanish, recorded, transcribed, and translated into English.

Results: Twenty-eight respondents provided over 26 hours of data, and 46% were adult hematologists/oncologists. We identified multiple barriers in caring for AYA patients, including clinical, psychosocial, financial, and educational barriers. These include a lack of a multidisciplinary team focused on AYA patients, mental health support, a dedicated space for this patient population, high treatment costs, travel distance to the hospital, and discontinuity of care due to age limits. In addition, there are competing demands for resources with adult oncology, delays in diagnosis, and patients' abandonment of treatment. Potential opportunities for improvement included having multidisciplinary AYA oncology teams, standardized treatment protocols, AYA-specific cancer registry, dedicated space, mental health support (e.g., support groups), improving access to health insurance, patient and physician education, and vocational assistance.

Conclusions: This study identifies substantial barriers to the care of AYA patients with cancer in Central America, Mexico, the Caribbean, and Peru. It also highlights key areas for potential intervention to improve outcomes in this population. These key findings can guide cancer control programs in Latin America as they begin to include AYAs.

Objectives: Testicular cancer survivors can experience cardiovascular and respiratory complications due to cancer treatment. We assessed associations between nitrogen dioxide (NO₂) and ozone (O₃) air pollution and health care encounters among survivors of adolescent and young adult (AYA) testicular cancer.

Methods: A total of 385 AYA testicular cancer survivors, diagnosed 2000-2016, with cardiovascular and/or respiratory health care encounters (emergency department/urgent care [ED/UC], inpatient) were identified using a statewide Utah-based resource. Continuous and dichotomous (≥moderate air quality index) exposure measures were included for NO₂ and O₃ for the 1-4 days (lag days) before events. A case-crossover framework using conditional logistic regression with robust standard errors computed the association of lag days 0-3 with cardiovascular or respiratory encounters and stratified by encounter type (ED/UC, inpatient). Models that were significant in the full cohort were also stratified on demographic and treatment factors. All models were controlled for temperature and humidity.

Results: Survivors contributed 257 cardiovascular and 685 respiratory encounters. NO₂ ≥moderate on lag day 1 was associated with increased odds of any cardiovascular encounter (odds ratio [OR] = 1.97, 95% confidence interval [CI] = 1.08-3.59) and inpatient cardiovascular encounters in the full cohort (OR = 2.48, 95% CI = 1.21-5.10), survivors treated with radical orchiectomy and chemotherapy (OR = 3.00, 95% CI = 1.29-7.00), and Hispanic survivors (OR = 4.32, 95% CI = 1.18-15.85). O₃ ≥moderate on lag day 4 was associated with respiratory ED/UC encounters (OR = 1.34, 95% CI = 1.00-1.79) and O₃ on lag day 4 was associated with any cardiovascular encounter (OR = 1.02/parts per billion [ppb], 95% CI = 1.00-1.03) and inpatient cardiovascular encounters (OR = 1.03/ppb, 95% CI + 1.00-1.05).

Conclusions: NO₂ and O₃ are associated with risk for health care encounters among testicular cancer survivors and could increase health disparities in survivorship.

Anti-obesity medications (AOMs) have not been studied in survivors of adolescent and young adult (AYA) cancer. In this retrospective analysis, generalized additive mixed model with penalized spline described body mass index (BMI) over time among survivors of AYA cancer prescribed an AOM. Body weight and BMI at pre-AOM maximum and last follow-up were summarized, with 95% confidence intervals. Over a median follow-up time of 249 days, 63.4% of survivors had ≥5% weight reduction. The proportion of survivors with severe obesity decreased from 60% to 35%. These findings suggest that AOMs are effective for weight reduction in survivors of AYA cancer.

While quality of life (QoL) has been well-studied in older adults with melanoma, it has received less attention in adolescents and young adults (AYAs). Understanding QoL trajectories in AYAs with melanoma can help identify care gaps and develop interventions to support patients through cancer treatment and survivorship. A systematic review of MEDLINE, Embase, Cochrane, and Web of Science identified 4283 unique articles. Clinical trials, cohort studies, cross-sectional studies, and qualitative studies were included if the study cohort addressed any aspect of QoL in AYA patients (ages 15-39) with cutaneous, ocular, or mucosal melanoma. Out of 128 full-text articles, 9 met inclusion criteria, representing 1516 AYAs with melanoma. Psychological health was the most reported QoL domain, followed by social health and relationships. Compared with AYAs with other cancers, patients with melanoma, were more likely to experience distress related to body image, fear of cancer recurrence, and higher levels of depression, anxiety, and sexual problems. Eighty-two studies did not stratify QoL outcomes by age, and eight studies included AYA patients with multiple types of cancer, but did not stratify QoL outcomes by cancer type, thus, the AYA patients could not be identified within the larger QoL data pool and excluding at least 374 patients. Gaps remain in our understanding of these challenges, emphasizing the need for additional research investigating distress in this population. Developing a standard QoL battery and stratifying QoL outcomes by age and cancer type are two potential opportunities to improve future QoL outcomes research for this population.

There is consensus among health care professionals that the needs of young adults (YAs) are poorly met. A service evaluation was performed, using semi-structured interviews to explore how YAs (n = 9) perceive peer support. Findings highlighted the importance of peer support in enhancing the patient experience by fostering meaningful connections and offering opportunities to serve as positive role models to others. Many YAs feel disconnected from their friends, making peer support a valuable source of normality. Participants expressed a preference for weekly 45-60-minute sessions and highlighted the importance of effective promotion and relevant discussion topics to encourage engagement.

Purpose: Treatment for germ cell tumors (GCTs) in adolescent and young adults (AYA: 15-39) spans different primary sites and multiple specialties. Little is known about the treatment patterns outside of clinical trials, including the delivery of guideline-concordant care.

Methods: This is a population-based, retrospective cohort study of AYAs diagnosed (2004-2018) with GCT. Guideline-concordant care was determined using treatment text-field data from the California Cancer Registry. Survival models measured the impact of guideline-concordant care as a time-dependent variable on overall survival accounting for known prognostic factors. GCTs were analyzed separately by primary site (extragonadal, ovarian, and testicular).

Results: The majority of patients had testicular GCT (90.4%), early-stage disease (stage I/II: 75.3%), and received part/no treatment at a specialized cancer center (SCC) (77.5%). For treatment, 37.6% of patients received surgery plus chemotherapy, followed by surgery alone (36.2%). The most common chemotherapy regimen was bleomycin, etoposide, and cisplatin. Sixty-four percent of patients received guideline-concordant care, with variations by primary site (extragonadal 54.7%, ovarian 70.1%, and testicular 64.6%). Receipt of guideline-concordant care was associated with superior survival for testicular primaries (hazard ratio = 0.56, confidence interval: 0.45-0.69). Patients with testicular primaries who had no treatment at an SCC were less likely to receive guideline-concordant care.

Conclusion: This study identified that receipt of guideline-concordant care was associated with improved survival; however, a substantial proportion of AYA patients do not receive this care, highlighting the need to investigate the barriers to the delivery of guideline-concordant care in this patient population.

Purpose: Adolescent and young adult (AYA) cancer survivors (i.e., those diagnosed between the ages of 15 and 39 years) experience significant health and health care disparities. Formal evaluation of the role of community-based organizations in addressing these disparities is limited. Through a novel Health Equity Initiative, which included a series of community-driven conversations), Stupid Cancer, an AYA-focused cancer patient advocacy organization, sought to better understand the perceived impact of racism, homophobia, transphobia, and ableism on supportive cancer care among AYAs.

Methods: This paper describes how Stupid Cancer developed and implemented its Health Equity Initiative programming (2021-2023) and presents findings from this program. Community-driven conversations comprised of several virtual focus groups, working groups, and town halls conducted via Zoom over the two years. We performed thematic analysis of transcripts from community-driven conversations.

Results: Three themes were identified from community-driven conversations across initiative events 1) perception, 2) transition, and 3) representation. Based on these findings and further community discussions, four solutions were codeveloped with community members, which serve as proposed mechanisms for addressing identified health care inequities among AYA cancer survivors.

Conclusion: Inclusivity and representation are vital components of AYA cancer care delivery. More research and quality improvement initiatives are needed to identify community-level interventions to mitigate health care disparities, ensuring all AYAs receive access to high-quality cancer care.

Purpose: Since survival rates have improved over recent decades, there is an increasing number of childhood cancer survivors. Besides the late medical effects of the therapy, survivors experience financial and legal burdens and discrimination linked to their cancer history. The objective of this study was to examine the prevalence and types of discrimination faced by childhood cancer survivors in Germany.

Methods: We conducted a survey in the German childhood cancer community assessing domains of discrimination.

Results: Within 111 participants, recruited through social media campaigns and direct outreach to organizations in the field of pediatric oncology, 76.6% (n = 85) reported experiencing at least one form of discrimination. The most common areas of discrimination involved various types of insurance coverage (51.4%), employment (27.9%), and educational matters (16.2%).

Conclusion: Our findings highlight the significant prevalence of lifelong financial and legal burdens and discrimination among childhood cancer survivors. It reveals the urgent need for education, awareness campaigns regarding cancer survival, and legal measures to end discrimination and to establish equal treatment in terms of social and financial issues. Our results contribute to the ongoing discussion surrounding the law named "Right to be Forgotten" and advocate an implementation in Germany.

Purpose: This study analyzes differences in gravidity, fertility desires, and fertility treatment utilization among female cancer survivors relative to age-matched female controls with no history of cancer.

Methods: This cross-sectional study utilized four data sets from the National Survey of Family Growth (NSFG) ranging from 2011 to 2019. Out of 16,172 participants, 310 cancer survivors and 620 age-matched controls were identified. Secondary analysis assessed subgroups of survivors based on age at diagnosis, categorizing those diagnosed at age less than 20 years old as childhood cancer survivors (CCSs). Statistical analysis involved frequencies (%), chi-square tests, and logistic regression models to compare reproductive history, fertility desires, and treatments sought among groups.

Results: There was no significant difference in gravidity between female cancer survivors and age-matched controls. Gravid CCSs were more likely to want a/nother baby than gravid controls (p = 0.017). Nulligravid subjects had higher rates of fertility desires than gravid women, except in the CCS group. There were no significant differences in seeking fertility treatment between survivor groups and controls, except for higher rates of in vitro fertilization treatment in survivors diagnosed before their first pregnancy (3.4% vs. 0.3%, p = 0.017).

Conclusion: Overall rates of gravidity are similar between female cancer survivors and non-survivors. However, there are differences in CCSs' desires for fertility. These findings emphasize the importance of thorough fertility preservation counseling and proactive consideration of fertility desires from the time of diagnosis through survivorship (particularly, for women diagnosed in childhood).

Purpose: No studies regarding embryo freezing as a technique for preserving fertility among patients with cancer have been conducted in Japan. Hence, we surveyed embryologists working at fertility preservation facilities to investigate the current status of embryo freezing for fertility preservation in patients with cancer in Japan.

Methods: Embryologists from 622 institutions registered for in vitro fertilization and embryo transfer with the Japan Society of Obstetrics and Gynecology were surveyed online about their embryo freezing practices.

Results: The survey revealed that 352 institutions perform embryo freezing for general assisted reproduction, while only 178 (50.6%) do so for fertility preservation. About 23.0% use different criteria or personnel for cryopreservation based on purpose, 15.2% freeze pronuclear stage embryos, 84.3% freeze cleavage stage embryos, and 92.7% freeze blastocyst stage embryos. All institutions use vitrification, and over 90% follow the manufacturer's protocol for freezing and thawing.

Conclusions: Fertility preservation through embryo freezing is not widely used in Japan, and there is inadequate data on the therapy's current status and results for patients with cancer. Further research is necessary to provide patients with cancer with the opportunity to preserve their fertility without major concerns and ultimately enhance their quality of life after treatment.