Journal of adolescent and young adult oncology最新文献

The "Groupe Onco-hématologie Adolescents Jeunes Adultes" (GO-AJA) born in 2012 is a French collaborative group. It focuses on heterogeneity and unmet needs for AYA with cancer. This article highlights GO-AJA's achievements and future prospects, emphasizing its role in structuring a professional national network, improving AYAs' comprehensive care and strengthening the roles of coordinating nurses. It also covers AYA multidisciplinary tumor boards, guidelines edition, education and training. Challenges persist, including limited AYA clinical trials and territorial inequalities in care access and team resources. Future success hinges on increased medical community awareness, stakeholders investment, and European collaborations.

Purpose: To investigate the actual status of fertility preservation techniques in oncofertility in Japan and to clarify the involvement of embryologists in this field. Methods: This survey was conducted online, targeting embryologists working at 622 facilities registered with the Japan Society of Obstetrics and Gynecology for assisted reproductive technology. Results: The response rate was 56.6%. In total, 56.8% of facilities used some form of cryopreservation as fertility preservation therapy for patients with cancer; patients' age range was widely defined at each facility. The most common renewal frequency of cryopreserved specimens for patients with cancer was at 1-year intervals. The most common renewal methods were during patient visits to the hospital and contact by letter. Knowledge levels regarding fertility preservation therapy were not high among many embryologists, but respondents recognized the important role of embryologists in oncofertility. Conclusions: This study is the first to clarify the importance of embryologists in oncofertility. Many embryologists felt that their knowledge of fertility preservation was limited and considered it necessary to improve their education, including public certification. Guidelines for long-term storage systems, including methods for renewal of cryopreservation, need to be established.

Purpose: Fertility concerns (FC) are central to the well-being of many adolescent and young adult (AYA) cancer survivors. Clinical conversations about FC and fertility preservation are suboptimal, increasing patient distress. The goal of this project was to establish content validity and comprehensibility of self-report questions on FCs for AYAs with cancer. Methods: Following best practices, we conducted: (1) item identification, refinement, and generation; (2) translatability and reading level review; and (3) cognitive interviews. Items were reviewed by five AYAs in each round of cognitive interviews. Results: A systematic search yielded 63 measures and 873 items. Fifty items were subsequently modified to enhance clarity and relevance, representing subdomains of psychological and social/relational FC. Flesch-Kincaid analysis found 31 items written above the 6th grade level, which were subsequently revised. Translatability review resulted in the modification of 3 items. During cognitive interviews, 76% of AYAs found items easy to answer with 52% describing them as "very easy" and 24% as "somewhat easy." Sixty percent of participants indicated the items captured their experiences. The majority of those who reported items only somewhat reflected or did not reflect their experiences suggested items were simply not applicable for their particular case. Conclusion: This study is a critical step toward the foundation for an FC measurement system that is reliable, flexible, developmentally appropriate, comprehensible, translatable, and interpretable. Subsequent steps include psychometric testing to examine the construct validity and reliability of the FC items and calibration to enable the application of computer-adaptive testing and short form development. The evaluation will include potential item response bias by age range, gender identity, and race/ethnicity.

Advances in medical technology are expected to increase the possibilities for pregnancy for women during and after cancer treatment. We aimed to clarify the psychological dimensions of cancer diagnosis for patients hoping for a pregnancy (their own or their spouse/partner's) during or post-treatment and identify ways to improve support for these survivors and their families. A systematic literature review was conducted in May 2023 using six electronic databases: PubMed, Web of Science, Cochrane Library, PsycINFO, Ichushi-Web, and CINAHL. The search targeted English and Japanese studies with English abstracts published between January 1, 2001, and May 10, 2023. Search terms related to cancer, pregnancy, and psychological aspects were included. The initial search identified 1328 potentially relevant studies after removing duplicates. Subsequently, two reviewers screened article titles and abstracts to exclude studies with no data, those unrelated to pregnancy, and so on, and identified 44 potentially relevant studies. Two reviewers then reviewed the full text of each study, and 20 articles finally met the inclusion criteria. Several studies indicated that trying to conceive negatively impacts survivors' finances, their relationships with their spouses/partners, and their mental health. Although many participants required fertility counseling, few received such opportunities. When cancer survivors try to conceive, they experience physical, psychological, and social burdens; moreover, many report a lack of access to fertility counseling or sufficient information about reproductive health care. Health care professionals should provide patients with updated and more accurate information on reproductive medicine and fertility counseling to enhance pregnancy support during the survivorship phase.

Purpose: To investigate the association of genetic polymorphisms Gln¹⁹²Arg and Leu⁵⁵Met of Paraoxonase 1 (PON1) gene, and Arg²¹³His of Sulfotransferase 1A1 (SUT1A1) gene with occurrence of breast cancer among young women living in Rio de Janeiro city. Methods: This is a hospital-based case-control study including 265 women aged 18-35 years, diagnosed with breast cancer at National Cancer Institute; and 277 controls in the same age group selected among women patients and companions of three general hospitals from Rio de Janeiro public health network. Polymorphisms genotyping was performed using the PCR-RFLP technique. Results: For PON1 gene, breast cancer women had a greater chance of being homozygote for Leu⁵⁵Met polymorphism (OR_adjusted = 1.42, 95% CI= 0.67-3.00, recessive model) and a lower chance of having at least one allele of Gln¹⁹²Arg polymorphism (OR_adjusted = 0.75, 95% CI = 0.50-1.13, dominant model), but without statistical significance. Accordingly, frequency of the haplotype Met⁵⁵/Arg¹⁹² was lower among breast cancer women, but no statistically significant association was observed (OR_adjusted = 0.85; 95% CI = 0.48-1.51). SULT1A1 His/His genotype was significantly associated with a protective effect for breast cancer (OR _adjusted = 0.51, 95% CI = 0.28-0.91, recessive model). Conclusion: Arg²¹³His polymorphism of SUT1A1 gene showed a protective effect against breast cancer among Brazilian young women. More studies with different designs are needed to understand the role of PON1 and SULT1A1 polymorphisms in breast cancer development in young Brazilian women.

Background: Cancer incidence (CI) and mortality vary significantly among countries and are impacted by numerous factors including the country's income and human development index (HDI). Cancer mortality (CM) in the adolescent and young adult (AYA) population, the age group of 15 - 39 years, has seen minimal improvement over the past few decades. Our study aims to identify disparities in this group and analyze the influence of income and HDI on these outcomes. Methods: We utilized the GLOBOCAN database estimates of incidence and mortality for year 2022 in 185 countries or territories for 36 cancer types to analyze the trends in crude rate of CI and crude rate of CM. Results: Globally, in 2022, an estimated 1.32 million new cases of cancer and 379,273 deaths were reported among individuals aged 15-39 years. The CM-to-CI ratios for countries with very high, high, medium, and low HDI were 16.6, 1:4.4, 1: 2.2, and 1:1.9, respectively. Similarly, based on the income level of countries, the CM-to-CI ratios were observed to be 1:8.6 for high-income, 1:4.8 for upper-middle-income, 1:2.3 for lower-middle-income, and 1:1.7 for low-income nations. Conclusion: Countries with a higher HDI and income levels experienced a notably higher incidence of cancer. However, the mortality rates were inversely related to the income and HDI. Mortality-to-incidence (CM:CI) ratios were alarmingly higher in countries with lower income and lower HDI. Introducing age-specific reforms and programs for the understudied AYA population in low to middle-income countries can have a significant impact on reducing CM globally.

Purpose: A cancer diagnosis in adolescence and young adulthood significantly impacts a person's quality of life, particularly concerning identity, self-esteem, and subsequently, body image. This study aims to develop a psychometrically-sound patient-reported outcome measure of body image for adolescent and young adult (AYA) oncology patients that was guided by the National Institutes of Health's Patient-Reported Outcomes Measurement Information System® (PROMIS) Scientific Standards and our past concept elicitation interviews with AYAs. Methods: We conducted a multi-step approach involving item identification, refinement, generation; translatability and reading level review; and cognitive interviews. A purposive sample of 25 AYA patients participated, ensuring representation across educational levels, gender, treatment status, and cancer type. Results: Translatability and reading level reviews facilitated language adjustments. Cognitive interviews revealed that 76% of AYAs found the 50 candidate items assessing body image concerns to be easy to answer. AYAs reported that the body image items captured their lived experiences. Three items were excluded due to comprehension difficulties. Conclusion: This study addresses the critical gap in validated measures for assessing body image in AYA oncology patients. Interview findings provided evidence for the content validity and comprehensibility for 47 items assessing body image. The next steps involve large-scale psychometric testing to evaluate the reliability and validity of the body image items to form an item bank allowing the design of short forms or use of computerized-adaptive testing. Ultimately, this work lays the foundation for developing interventions to mitigate the impact of cancer on AYAs' body image during diagnosis, treatment, and recovery.

Purpose: Female childhood cancer survivors (CCSs) risk infertility due to gonadotoxic chemotherapy/radiation. Anti-Müllerian hormone (AMH) helps evaluate ovarian reserve, and the 2020 Oncofertility Pediatric Initiative Network (O-PIN) risk stratification is utilized to counsel risk of gonadal dysfunction/infertility. This study analyzed how AMH levels after cancer treatment differ with age and correlate AMH with O-PIN risk level and clinical outcomes. Methods: A literature review and mega-analysis of individual patient data were performed. Females ages 0-20 years at the time of cancer diagnosis with AMH values post-treatment were included. AMH outcomes were compared by O-PIN risk stratification, age at diagnosis, cyclophosphamide equivalent dose (CED), and hematopoietic stem cell transplant (HSCT). Multivariable random effects mixed models correlated AMH with diminished ovarian reserve (DOR), premature ovarian insufficiency (POI), and pregnancy. Results: In 13 studies with 608 CCSs, the median age (years) at diagnosis was 12.0 (interquartile range [IQR] 5.2-16.2) and 21.1 (IQR 17.1-30.0) at AMH measurement. AMH values were higher with time since treatment and correlated with the O-PIN risk level. Patients with HSCT had very low/undetectable AMH levels regardless of CED; when stratified by CED, AMH levels were lower if treated peripubertally or older. AMH was detectable in 54% (34/63) of patients with POI on hormone replacement. Pregnancy did not correspond to the gonadotoxicity risk level (p = 0.70). Conclusion: This study supports utilizing the O-PIN risk stratification system in estimating risk of DOR in CCSs and its categorization by pubertal status. AMH levels may return over time even after receiving the highest risk therapy. These findings may help counsel cancer patients pre- and post-therapy.

Purpose: Adolescents and young adults (AYAs) with cancer predisposition syndromes often experience significant physical and psychosocial burdens. These burdens include cancer worry and potentially distressing bodily changes due to risk-reducing procedures (e.g., mastectomy) or cancer treatments. This qualitative-descriptive study explored how AYAs with Li-Fraumeni syndrome (LFS) relate and adjust to their bodies under the chronic threat of cancer. Methods: Participants were enrolled in the National Cancer Institute's LFS study. This analysis included 42 AYAs with LFS aged 15-39 years at enrollment who completed one or two telephone interviews that explored LFS-related bodily experiences and challenges. Transcripts were thematically analyzed. Results: The majority of participants (n = 26/42, 62%) had ≥1 primary cancer. The mean age at first cancer diagnosis was 21 years (range = 0.5-35 years). Participants described challenges relating to the body due to frequent self-monitoring, whole-body magnetic resonance imaging scans, risk-reducing surgeries, and/or cancer treatments. Heightened body awareness and vigilance not only prompted self-protective behaviors but also triggered worry and distress. AYAs coped with bodily changes and concerns by seeking doctors' reassurance, engaging in health-protective behaviors, and reframing perceptions of their altered bodies. Conclusion: Findings suggest AYAs with cancer predisposition syndromes such as LFS experience difficulties relating and adjusting to the body that may compromise psychosocial health. Our results demonstrate that these difficulties may arise across the time course of genetic disease, including before a cancer diagnosis. Clinicians might support AYAs by conducting routine psychosocial risk assessments, providing anticipatory guidance regarding body-related challenges, sharing peer support resources, and referring to mental health providers, as needed.

Purpose: The main objective of this study was to identify the facilitators of and barriers to the transition from pediatric to adult care for adolescents and young adults (AYAs) with cancer according to physicians and nurses working in oncology. The secondary objectives were (1) to explore the viewpoints of health care professionals (HCPs) on this transition and (2) to discover HCP's needs and the needs they perceive among AYAs and their parents. Methods: Semistructured interviews were conducted with 19 HCPs to discover their experiences with pediatric to adult care transitions. Thematic analysis was then conducted. Results: Participants reported that transitioning is a complex process influenced by numerous barriers and facilitators, which can be classified into four themes: (1) balancing the needs and relationships of the three actors involved in the transition process, (2) factors that enable HCPs to determine the ideal time for transitions, (3) institutional and organizational barriers and facilitators that challenge HCPs, and (4) HCPs' reflections on defining and improving the transition process. Conclusion: Beyond the lack of human and financial resources, which hinders the structuring of transitions, our results suggest the need for a paradigm shift. That is, the position given to AYAs in pediatrics before the transition needs to evolve so that they are gradually positioned at the center of the relationship with HCPs and, therefore, are the focus of care and the transition process. This will enable them to acquire the skills, knowledge, and autonomy needed for a successful transition to adult care.