Journal of adolescent and young adult oncology最新文献

Background: The primary objective was to measure adherence to clinical practice guideline (CPG) recommendations for fertility preservation (FP) in pediatric cancer patients treated in National Cancer Institute Community Oncology Research Program (NCORP) sites. Secondary objectives were to describe factors such as site size associated with CPG-inconsistent care delivery and cryopreservation completion. Methods: This retrospective, multicenter study included patients 15 to 21 years old with a first cancer diagnosis from January 2014 through December 2015 who were previously enrolled to a Children's Oncology Group (COG) study and received care at a participating NCORP site. Patients were randomly selected from a list generated by the COG for chart review by participating sites. Primary outcome was care delivery that was inconsistent with a strong CPG recommendation on FP, namely discussion and offering of FP options before cancer treatment initiation, as adjudicated centrally by a panel. Results: A total of 129 patients from 25 sites were included. Among these, 48% (62/129) received CPG-inconsistent care. Most CPG-inconsistent care was due to lack of FP discussion documentation (93.5%, 58/62). Small site size, treatment at a pediatric (vs mixed adult/pediatric) site, and female sex were associated with higher odds of CPG-inconsistent care delivery. Conclusions: Newly diagnosed pediatric cancer patients often received CPG-inconsistent care for FP, with disproportionate gaps noted for females, and those treated at smaller or pediatric NCORP sites. The primary reason for CPG-inconsistent care is lack of FP discussion from clinicians. Opportunities to improve FP CPG implementation are highlighted.

Purpose: Understanding emergency department (ED) use in adolescent and young adult (AYA) survivors could identify gaps in AYA survivorship. Methods: We conducted a cohort study of 7925 AYA survivors (aged 15-39 years at diagnosis) who were 2-5 years from diagnosis in 2006-2020 at Kaiser Permanente Southern California. We calculated ED utilization rates overall and by indication of the encounter (headache, cardiac issues, and suicide attempts). We estimated rate changes by survivorship year and patient factors associated with ED visit using a Poisson model. Results: Cohort was 65.4% women, 45.8% Hispanic, with mean age at diagnosis at 31.3 years. Overall, 38% of AYA survivors had ≥1 ED visit (95th percentile: 5 ED visits). Unadjusted ED rates declined from 374.2/1000 person-years (PY) in Y2 to 327.2 in Y5 (p change < 0.001). Unadjusted rates declined for headache, cardiac issues, and suicide attempts. Factors associated with increased ED use included: age 20-24 at diagnosis [relative risk (RR) = 1.30, 95% CI 1.09-1.56 vs. 35-39 years]; female (RR = 1.27, 95% CI 1.11-1.47 vs. male); non-Hispanic Black race/ethnicity (RR 1.64, 95% CI 1.38-1.95 vs. non-Hispanic white); comorbidity (RR = 1.34, 95% CI 1.16-1.55 for 1 and RR 1.80, 95% CI 1.40-2.30 for 2+ vs. none); and public insurance (RR = 1.99, 95% CI 1.70-2.32 vs. private). Compared with thyroid cancer, cancers associated with increased ED use were breast (RR = 1.45, 95% CI 1.24-1.70), cervical (RR = 2.18, 95% CI 1.76-2.71), colorectal (RR = 2.34, 95% CI 1.94-2.81), and sarcoma (RR = 1.39, 95% CI 1.03-1.88). Conclusion: ED utilization declined as time from diagnosis elapsed, but higher utilization was associated with social determinants of health and cancer types.

Thyroid cancer (TC) has been deemed "the good cancer" owing to its slow growth, availability of targeted treatment, and low mortality rates. Inconsistent with this name, survivors of TC have similar or poorer quality of life than individuals with other types of cancer. Furthermore, young adults (YAs; age 18-35) with TC are at risk for additional psychosocial challenges. Support groups have been identified as a mechanism for improving quality of life among other YAs with cancer. A YA TC group is warranted given the unique experiences of TC survivors. Discussion points from a newly developed YA TC support group are reviewed.

Purpose: Young adult cancer survivors experience disruptions in various life domains (e.g., relationships, academic/career) during and after treatment. This study examined life disruptions and related supports to update interventions to improve psychological outcomes. Methods: In April-July 2023, young adult survivors (n = 23) were recruited (via clinics, support groups, nonprofit organizations, etc.) to complete semi-structured interviews assessing cancer's impact across life domains, how they coped with related disruptions, and facilitators to improved psychosocial well-being. We used a dual deductive-inductive approach to develop a codebook and then coded transcripts in Dedoose. Results: This sample was on average 33.7 years old (standard deviation [SD] = 4.4), 78.3% female, 73.9% non-Hispanic White, 47.8% married/cohabitating, 2.4 (SD = 1.0) years post-diagnosis, 1.4 years (SD = 0.9) post-treatment, and largely diagnosed with breast cancer (52.1%) or leukemia/lymphoma (34.7%). The most salient themes related to disruptions included mental health, feelings of isolation during survivorship, and disruptions to career and relationships with family or partners. Participants reported challenges navigating these feelings and disruptions, and difficulty understanding and conveying their needs. Many experienced limited support for navigating cancer-related trauma and life disruptions as a survivor. Participants also reported some positive impacts, like reevaluating their values and goals or feeling resilient, and emphasized the need to identify supports, accept that life had changed because of cancer, and have their needs and continued struggles validated by others during survivorship. Conclusions: Young adults experience ongoing disruptions across multiple life domains, underscoring the need for integrated, longer-term psychosocial supports to help them navigate these disruptions and reevaluate their goals.

Purpose: Adolescents and young adults (AYA) with chronic illnesses experience an increase in mental health concerns. A mental health screening (MHS) process for hematology and oncology patients was implemented in a single institution. The quality improvement project was conducted to integrate a MHS process, educate providers about the importance of mental health in this patient population, and evaluate the process. Methods: The COM-B (capability, opportunity, motivation-behavior) model for behavior change was used to inform strategic planning and Plan-Do-Study-Act (PDSA) methodologies for process improvement. Retrospective chart reviews and surveys were conducted to determine missed screening rates and providers' perceptions, knowledge, attitudes, and skills of the MHS process. Results: Of 334 eligible patient encounters, the missed screening rate was 15.0%, the overall error rate of completing the screening was 3.8%, the error rate of completing the suicide or self-harm indicator was 2.6%, and the missed medical social worker touch point was 4.8%. Conclusion: The rising rates of mental health concerns in AYA hematology and oncology patients call for streamlined MHS processes to improve the identification of patients who may need intervention and services. Processes should be tailored to workflows and available resources. Future PDSA cycles will include providing dedicated nursing education and determining the cost needed to meet the rising mental health needs of the AYA hematology and oncology population.

Given recent advances in cancer therapeutics, there is a growing population of adolescent and young adult (AYA) cancer survivors navigating the physical and psychological consequences of cancer treatment. Fertility preservation (FP) conversations are of increasing importance for these survivors. Decision regret (DR) is a measure of distress or remorse following a health care decision, and it is a useful tool to evaluate the impact of a treatment on quality of life. The aim of this systematic review is to culminate existing literature focused on determinants of FP DR among AYA cancer survivors and to propose future interventions to reduce DR among AYA cancer survivors. An electronic database search was performed using PubMed, Web of Science, and APA PsycINFO for articles published before December 2023 using the following search criteria: PubMed: "Fertility Preservation"[Mesh] AND decision regret, APA PsycINFO and Web of Science: Fertility Preservation AND decision regret. Articles were organized into five categories that emerged after initial review. Nineteen articles that focused on DR and FP in AYA cancer survivors aged ≤40 and ≥12 years were included. Article results were categorized into five categories pertaining to determinants of FP DR: Unmet Informational and Emotional Needs, Need for Developmentally Appropriate Conversations, Insufficiency of Provider Training, Quality and Timeliness of Fertility Preservation Discussions, and Societal Barriers. These results highlight the need for improved patient and provider education on FP, such as future longitudinal studies focused on standardization of FP-related protocols and the impact of their implementation on DR, especially for AYA cancer survivors.

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.

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: In 2018, a "survival cliff" in the United States was identified among older adolescent and young adult (AYA) patients with acute lymphoblastic leukemia (ALL) and lymphoblastic lymphoma (LBL). This study reassessed the cliff and associated putative causes. Methods: Survival data were obtained using the U.S. Surveillance Research Program, National Cancer Institute (NCI) SEER 22 Registries. Accrual data on cancer treatment trials conducted by the NCI cooperative groups and NCI-designated cancer centers were obtained from the NCI Cancer Therapy Evaluation Program. Trend and average percent changes and statistical significances were identified with the NCI Joinpoint Regression Program. Results: A previous cliff-like decrement in the survival of 17- to 20-year-olds is no longer apparent, overall and in all racial and ethnic groups. The "survival cliff" age range was coincident with a clinical trial accrual cliff, and both diminished when more clinical trials were available to, and participated in by, young adult patients. Older AYA patients of ages 30-39 had minimal improvement in clinical trial accrual and least survival gain among the AYA age group. Conclusion: The survival cliff has abated, resulting in thousands of fewer premature deaths and tens of thousands of years of life saved-a remarkable achievement. The survival improvement may be attributed to improved clinical trial availability for and recruitment and participation of AYAs on treatment trials, application of pediatric-inspired ALL treatment regimens to AYAs, expanded national health insurance for -18 to 25 year olds, improved AYA cancer services, and a national focus on AYA oncology.