Journal of adolescent and young adult oncology最新文献

Purpose: The experience of cancer during adolescence is particularly challenging given developmental factors during this life stage. Therefore, the transition off cancer care and back to adolescent pursuits requires a developmentally sensitive approach. This study applied the Adolescent Well-Being Framework to qualitative data collected from adolescent and young adult (AYA) cancer survivors and their caregivers to better understand their experiences and needs and to develop recommendations for developmentally appropriate transition care for adolescents. Methods: Researchers partnered with a key informant community advisory board to develop study procedures and recruited participants in partnership with a national nonprofit organization serving caregivers of children with cancer. AYA cancer survivors (N = 30; aged 12-20 years; 53% female) and caregivers (N = 43; 100% female) responded to open-ended questions through an online crowdsourcing platform. Directed content analysis was used to distill themes relevant to fostering adolescent well-being during the transition off cancer treatment. Results: Eight distinct themes mapped onto the five domains of the Adolescent Well-Being Framework and highlight the need to attend to various aspects of adolescent well-being during the transition off cancer treatment, including physical recovery and mental health, connectedness to others, reentry into school and society, developing agency and resilience, and planning for a productive future. Findings informed specific recommendations to improve transition care for adolescents. Conclusion: Attention to the developmental needs and well-being of adolescents, as they end cancer treatment, may ease their transition away from their treatment team and improve engagement in post-cancer care while fostering a developmentally appropriate focus on health, connection, achievement, and resilience.

Introduction: Adolescents and young adults (AYA) are a unique subgroup of patients who experience cancer at the interface between pediatric and adult oncology services. Central nervous system (CNS) tumors are the leading cause of cancer-related morbidity and mortality in this group. Socioeconomic status and ethnicity are known to impact CNS tumor survival in patients of all ages. Studies reporting AYA CNS survival outcomes by ethnicity and area-based deprivation, however, are lacking in the United Kingdom (UK). Methods: Using cancer registration data for 351 patients (12-29 years) who received systemic chemotherapy for a high-grade malignant CNS tumor in England between April 2014 and December 2018, we quantified differences in survival at 1, 2, and 3 years post-diagnosis by ethnicity and area-based socioeconomic status. Results: Lower survival estimates were seen for non-White ethnicity and lower socioeconomic groups. Three-year survival was 64.4% (95% CI 58.3-69.9) for White patients but 46.6% (95% CI 29.9-61.7) for non-Whites and 64.0% (95% confidence interval [CI] 49.0-75.7) and 62.9% (95% CI 50.7-72.8) in those from the two least deprived fifths compared to 50.2% (95% CI 36.1-62.7) and 56.1% (95% CI 42.4-67.7) in the two most deprived groups. Conclusion: Our study is the first to show the existence of health disparities in AYA treated with chemotherapy for a primary CNS tumor in England, where patients from ethnic minorities and deprived areas had worse survival rates than their White and socioeconomically advantaged counterparts. These findings call for further research into the underlying reasons behind survival differences between sociodemographic groups to improve survivorship outcomes.

The number of adolescent and young adult cancer survivors (AYACSs) is increasing due to advancements in therapies. Despite these improvements, 70% of survivors experience long-term side effects. This systematic review aims to identify digital tools that enhance the quality of life and well-being of AYACSs aged 15-29 years. The review was conducted using four databases: PubMed, Science Direct, Cochrane, and PsycINFO (OVID platform). Articles from bibliographic references of selected studies were also included if relevant. The search followed Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines and included studies published between January 2014 and December 2024 that described digital tools focusing on quality of life and/or well-being. Titles and abstracts were independently assessed by two reviewers, with a third reviewer resolving disagreements. The initial search identified 291 articles, updated in December 2024. After screening, 285 articles were excluded for not meeting the inclusion criteria. Three studies met the criteria, focusing on interventions related to information dissemination, physical activity, and psychological support. These studies, conducted in the United States and Australia between 2015 and 2024, included randomized controlled trials with measured outcomes related to quality of life and/or well-being. The findings suggest that digital tools can improve the quality of life of AYACSs, particularly through peer interaction and personalized content. However, the limited number of studies and participants highlights the need for further research. The review also discusses challenges in involving AYACSs in digital programs and suggests optimizing digital tools by promoting peer links, integrating social networks, and considering self-determination theory.

Purpose: Communication is a salient aspect of coping with cancer. Research suggests that young adult cancer survivors may experience unique challenges, including social isolation, fertility and family planning concerns, dating and marriage, and financial challenges. Little is known, however, about the types of communicative work young breast cancer survivors face. Methods: A total of 25 young breast cancer survivors between the ages of 18 and 39 participated in semi-structured interviews. The average age of the participants at the time of diagnosis was 34 (range = 26-39 years). Constant comparative analytic methods revealed themes relating to the types of communication work participants experienced. Results: Communication work was common among the participants. Specifically, the data revealed various types of communication work, including information work, relational work, emotion work, identity work, and coordination work. Conclusions: Communicative work persisted throughout breast cancer survivorship. Breast cancer survivors' loved ones should be cognizant of such challenges to promote empathic conversations across the cancer trajectory.

Purpose: Adolescent and young adult (AYA) cancer patients have unique nononcologic challenges compared to adult and pediatric counterparts. National guidelines highlight unmet care needs in mental, physical, and sexual/reproductive health domains. We present a single institution retrospective matched cohort study exploring the feasibility of using electronic medical record (EMR) to identify nononcologic domains correlating to unmet care needs in AYA patients with lymphoma compared with matched controls. Methods: AYA patients with lymphoma from 2014 to 2020 were compared to age/sex matched controls without cancer. The groups were queried using a novel EMR assessment prior to diagnosis and during the 1-year period after diagnosis. Prevalence and incidence of nononcologic care domains were compared. Results: Patients with lymphoma had higher rates of chronic pain and analgesic use (15% vs. 1%, p < 0.0001, and 60.84% vs. 29.33% p < 0.0001) prior to diagnosis and more fertility preservation appointments compared to controls. One year after diagnosis, there were higher rates of anxiety (29% vs. 21%, p < 0.017), antidepressant use (26% vs. 14%, p < 0.0003), opioid abuse (4% vs. 0.69%, p < 0.007), chronic pain (15% vs. 1%, p < 0.0001), analgesic use (80% vs. 13%, p < 0.0001), influenza vaccination (16% vs. 0.69% p < 0.0001), and reproductive endocrinology and infertility appointments (21.7% vs. 1%, p < 0.0001) in the lymphoma group. Conclusion: EMR can feasibly track institutional-level nononcologic care domains in AYA patients to frame development of institution-specific interventional studies to address care gaps and design prospective patient surveys to correlate to patient-identified concerns.

Purpose: The number of long-term childhood cancer survivors (CCSs) has been increasing, and the importance of transitioning from pediatric to adult care has been advocated. This study aimed to describe the health problems of adult CCSs from adult-care perspectives. Methods: We conducted a chart review of adult CCSs aged ≥18 years who visited a transition clinic in adult care between June 2019 and March 2024. Results: The study included 25 CCSs, with a median follow-up period of 14 months. The median number of medical departments requiring regular clinic visits was three (range 1-7). Among the participants, 15 (60%) had at least one severe health problem (grade 3 or higher). Notably, 45% (5 of 11) of participants with cardiovascular disease and 64% (9 of 14) of those with bone mineral density (BMD) deficiency were diagnosed after transition. During the follow-up period, 13 CCSs were hospitalized in the adult ward. Additionally, 52% (13 of 25) of the CCSs requested psychosocial intervention. Five CCSs who had health problems such as pituitary insufficiency, hearing loss, and visual impairment needed ongoing support from social workers. Conclusion: Adult CCSs present with multiple health problems and risks. Because the health care system is different between adult care and pediatric care, comprehensive re-evaluation of health problems and care optimization from the adult-care perspective is important for the successful transition of CCSs to adult care.

Purpose: This study evaluated the program delivery of a part of the age-specific intervention Young Adult Taking Action (YATAC), a rehabilitation program for young adult cancer survivors, focusing on dose, adherence, fidelity and adaptation. It also explored changes in health-related quality of life, fatigue, depression, anxiety, and loneliness. Methods: A one-armed feasibility study with 19 young adult cancer survivors (aged 18-39) involved in a multicomponent rehabilitation program a 5-day residential stay, a 10-week home-based period, and a 2-day follow-up. Program delivery data were collected during the stays, and patient-reported outcomes were assessed at baseline and 10 weeks. Changes were analyzed using the Wilcoxon signed-rank test, and responder analysis assessed minimal clinically relevant changes. Results: All sessions were delivered, with 100% of participants completing the five-day and a two-day stay. Adherence and fidelity were both 83%, though 30% of sessions reported time constraints. Significant improvements were observed in cognitive functioning (p = 0.0046), fatigue (p = 0.0066), and anxiety (p = 0.0146). More participants showed minimal clinically relevant improvements in cognitive functioning (63%) than deteriorations. Fatigue was the only outcome with no reported clinically relevant deterioration. Conclusion: The tested part of the YATAC program demonstrated feasibility with high adherence and fidelity. Some adjustments to session duration and structure are needed. The program showed potential to improve cognitive function, fatigue, and anxiety, though findings should be interpreted cautiously due to the small sample size and one-armed design.

Purpose: Adolescents and young adults (AYAs) experience higher burdens of negative psychological outcomes (e.g., depression, anxiety, and stress) of cancer compared to older survivors and caregivers. We elicited feedback about the adaptation of two randomized controlled trials (RCTs), one using a symptom management and survivorship handbook (SMSH) and another using telephone-based interpersonal counseling, for AYA cancer survivors and caregivers of AYAs. Methods: Following the parent RCT, we conducted a follow-up study using semi-structured telephone interviews to elicit feedback from AYAs (ages 18-39 years at diagnosis) and adult caregivers of AYAs (aged 18+). Participants were asked to share satisfaction with the (1) content, (2) delivery, and (3) general experiences in the study. Interviews were recorded, transcribed, and quality checked. We categorized qualitative feedback through interpretive description. Results: There were N = 18 participants 10 women and 8 men; 8 cancer survivors and 10 caregivers. The interviews were 5-20 minutes (average = 10.5 minutes). Participants enjoyed the content and found the information helpful. Participants preferred digital materials for accessing information about cancer symptom management and treatment. Some participants continue to use the information from the SMSH after their participation. Conclusions: AYA cancer survivors and caregivers of AYAs were largely satisfied with the content of the intervention materials. Minor suggestions arose to modify the intervention materials to be more suitable through including digital materials and social connections.

Purpose: Pain management remains challenging for adolescent and young adult (AYA) cancer patients. Acupuncture and massage have been recommended for cancer-related pain management, but no prospective trials have been conducted in AYA patients. We explored the effects of acupuncture and massage on pain in AYAs. Methods: This subgroup analysis focused on AYA patients (aged 18-39 years) enrolled in a randomized controlled trial comparing acupuncture and massage for pain management in advanced cancer. Interventions were delivered weekly for 10 weeks, followed by monthly booster treatments through week 26. The primary outcome was the worst pain score from the Brief Pain Inventory, analyzed using a linear mixed-effects model. Results: Thirty participants met eligibility criteria (13 acupuncture; 17 massage), with a mean age of 31.1 years (standard deviation, 5.8); 57% were female; 67% were White; and 53% had solid tumors. Both groups experienced reduced pain over time. Relative to baseline, patients receiving acupuncture had a mean change of -1.26 points (95% confidence interval [CI], -2.54 to 0.01) at 10 weeks and a mean change of -1.46 points (95% CI, -2.78 to -0.14) at 26 weeks. Patients receiving massage experienced a mean change of -2.81 points (95% CI, -3.92 to -1.70) at week 10 and a mean change of -3.79 points (95% CI, -4.85 to -2.73) at week 26. Conclusion: AYA patients with advanced cancer who received either acupuncture or massage experienced clinically meaningful and sustained reductions in pain. These findings provide a promising foundation for future trials aimed at evaluating integrative pain management strategies in AYAs.