Pub Date : 2025-12-01Epub Date: 2025-03-17DOI: 10.1089/jayao.2024.0136
Emmanuel Desandes, Jacqueline Clavel, Florence Molinié, Patricia Delafosse, Brigitte Trétarre, Thomas Systchenko, Michel Velten, Gaelle Coureau, Karima Hammas, Anne Cowppli-Bony, Anne-Sophie Woronoff, Vincent Démaret, Olivier Ganry, Nicolas Vigneron, Simona Bara, Laetitia Daubisse-Marliac, Florent Huré-Papaïconomou, Alain Monnereau, Xavier Troussard, Isabelle Baldi, Guy Launoy, Brigitte Lacour, Perrine Marec-Berard
Purpose: The recent rise in the incidence of cancer in younger adults has been described in high-income countries. This study aimed to identify cancer incidence trends in France among adolescent and young adult (AYA) population. Methods: All cases of cancer diagnosed in 15-39 years, recorded by all French population-based registries (24% of the population), over the 2000-2020 period, were included. World age-standardized incidence rates (ASR) and annual percentage change (APC) of incidence over time were calculated. Results: We analyzed 54,735 cancer diagnoses in AYAs. The ASR over the 2000-2020 period in 15-39 years was 58.1 per 100,000 (95% confidence interval [CI] 57.0-59.2). ASR was lower in males (47.2 [45.7-48.6]) than in females (68.9 [67.2-70.6]). Incidence per 100,000 differed with age group from the lowest, 20.5 (19.8-21.2) in 15-19 years, to the highest, 130.3 (128.6-132.0) in 35-39 years. Increases in incidence were observed for essential thrombocythemia (APC: 3.33% [1.52-5.16]), Hodgkin lymphoma (HL) (APC: 1.86% [1.21-2.52]), liposarcoma (APC: 3.68% [0.83-6.61]), carcinomas of urinary tract (APC: 3.95% [2.85-5.06]), gastrointestinal tract (APC: 2.62% [1.96-3.28]), and breast (APC: 1.61% [1.22-2.01]) from 2000 to 2020, glioblastoma (APC: 6.11% [3.06-9.26]), and other astrocytomas (APC: 7.41% [5.13-9.75]) from 2005 to 2020. Decreases in incidence were observed for oligodendroglioma (APC: -8.78% during 2005-2020), and other invasive carcinomas (APC: -3.34% during 2000-2020). Conclusion: Increases in the incidence of some AYA cancer types are observed HL, liposarcoma, carcinomas of colorectum, breast, and kidney. Results for central nervous system tumors are still to be confirmed in the years to come. Extensive efforts are needed to identify underlying risk factors responsible for these trends to inform prevention strategies.
{"title":"Trends in the Incidence of Cancer Among Adolescents and Young Adults Between 2000 and 2020: A Study Based on French Population-Based Registry Data.","authors":"Emmanuel Desandes, Jacqueline Clavel, Florence Molinié, Patricia Delafosse, Brigitte Trétarre, Thomas Systchenko, Michel Velten, Gaelle Coureau, Karima Hammas, Anne Cowppli-Bony, Anne-Sophie Woronoff, Vincent Démaret, Olivier Ganry, Nicolas Vigneron, Simona Bara, Laetitia Daubisse-Marliac, Florent Huré-Papaïconomou, Alain Monnereau, Xavier Troussard, Isabelle Baldi, Guy Launoy, Brigitte Lacour, Perrine Marec-Berard","doi":"10.1089/jayao.2024.0136","DOIUrl":"10.1089/jayao.2024.0136","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> The recent rise in the incidence of cancer in younger adults has been described in high-income countries. This study aimed to identify cancer incidence trends in France among adolescent and young adult (AYA) population. <b><i>Methods:</i></b> All cases of cancer diagnosed in 15-39 years, recorded by all French population-based registries (24% of the population), over the 2000-2020 period, were included. World age-standardized incidence rates (ASR) and annual percentage change (APC) of incidence over time were calculated. <b><i>Results:</i></b> We analyzed 54,735 cancer diagnoses in AYAs. The ASR over the 2000-2020 period in 15-39 years was 58.1 per 100,000 (95% confidence interval [CI] 57.0-59.2). ASR was lower in males (47.2 [45.7-48.6]) than in females (68.9 [67.2-70.6]). Incidence per 100,000 differed with age group from the lowest, 20.5 (19.8-21.2) in 15-19 years, to the highest, 130.3 (128.6-132.0) in 35-39 years. Increases in incidence were observed for essential thrombocythemia (APC: 3.33% [1.52-5.16]), Hodgkin lymphoma (HL) (APC: 1.86% [1.21-2.52]), liposarcoma (APC: 3.68% [0.83-6.61]), carcinomas of urinary tract (APC: 3.95% [2.85-5.06]), gastrointestinal tract (APC: 2.62% [1.96-3.28]), and breast (APC: 1.61% [1.22-2.01]) from 2000 to 2020, glioblastoma (APC: 6.11% [3.06-9.26]), and other astrocytomas (APC: 7.41% [5.13-9.75]) from 2005 to 2020. Decreases in incidence were observed for oligodendroglioma (APC: -8.78% during 2005-2020), and other invasive carcinomas (APC: -3.34% during 2000-2020). <b><i>Conclusion:</i></b> Increases in the incidence of some AYA cancer types are observed HL, liposarcoma, carcinomas of colorectum, breast, and kidney. Results for central nervous system tumors are still to be confirmed in the years to come. Extensive efforts are needed to identify underlying risk factors responsible for these trends to inform prevention strategies.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"494-503"},"PeriodicalIF":1.2,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143648772","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-01Epub Date: 2025-04-28DOI: 10.1089/jayao.2024.0141
Julie S W Childers, Jacob N Stein, Catherine Swift, Daniel Kleissler, Emily Haines, Melissa Matson, Stephanie Shea, Jennifer Hanspal, Kevin Chen, Vineeta Rao, Andrew B Smitherman, Juneko E Grilley-Olson, Lauren Lux
Purpose: Young adults (YAs) with cancer are a distinct and complex population, yet few interventions exist to meet their unique needs. Sarcomas disproportionately affect YAs, confer a high symptom burden and poor prognosis, and require multidisciplinary management. We sought to improve the delivery of goal-concordant care to YAs with sarcoma; enhance communication among clinicians, patients, and families; provide education around YA-specific needs; and support one another in serving this population. Methods: This study was submitted to the institutional review board and determined to be exempt. We established an innovative transdisciplinary collaborative combining medical oncology, palliative care, and social work expertise. We conduct joint visits, normalizing psychosocial and palliative care support and allowing for real-time tailoring of communication. Through iterative assessments, we track symptom trajectories and fluctuations in psychosocial needs, revisiting goals of care alongside clinical transitions. Biweekly rounds facilitate a shared approach to meet patients' needs. A retrospective chart abstraction identifies rates of contact with our YA team and advanced care planning (ACP) documentation. Results: Between 2020 and 2022, our team cared for 56 YAs (median age = 28 years, range = 18-42) with primarily metastatic (76%) sarcomas. Our patients averaged 6 touchpoints with a YA social worker, 8 visits with a YA palliative care provider, and 14 visits with a YA medical oncologist. ACP documentation increased drastically. Conclusion: With no additional hospital resources and few workflow modifications, we established a functional transdisciplinary, collaborative team in support of YAs with sarcoma. Our model is both sustainable and adaptable to other cancer types and care settings.
{"title":"All Hands on Deck: A Novel Collaborative Model for Care Provision in Young Adult Oncology.","authors":"Julie S W Childers, Jacob N Stein, Catherine Swift, Daniel Kleissler, Emily Haines, Melissa Matson, Stephanie Shea, Jennifer Hanspal, Kevin Chen, Vineeta Rao, Andrew B Smitherman, Juneko E Grilley-Olson, Lauren Lux","doi":"10.1089/jayao.2024.0141","DOIUrl":"10.1089/jayao.2024.0141","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Young adults (YAs) with cancer are a distinct and complex population, yet few interventions exist to meet their unique needs. Sarcomas disproportionately affect YAs, confer a high symptom burden and poor prognosis, and require multidisciplinary management. We sought to improve the delivery of goal-concordant care to YAs with sarcoma; enhance communication among clinicians, patients, and families; provide education around YA-specific needs; and support one another in serving this population. <b><i>Methods:</i></b> This study was submitted to the institutional review board and determined to be exempt. We established an innovative transdisciplinary collaborative combining medical oncology, palliative care, and social work expertise. We conduct joint visits, normalizing psychosocial and palliative care support and allowing for real-time tailoring of communication. Through iterative assessments, we track symptom trajectories and fluctuations in psychosocial needs, revisiting goals of care alongside clinical transitions. Biweekly rounds facilitate a shared approach to meet patients' needs. A retrospective chart abstraction identifies rates of contact with our YA team and advanced care planning (ACP) documentation. <b><i>Results:</i></b> Between 2020 and 2022, our team cared for 56 YAs (median age = 28 years, range = 18-42) with primarily metastatic (76%) sarcomas. Our patients averaged 6 touchpoints with a YA social worker, 8 visits with a YA palliative care provider, and 14 visits with a YA medical oncologist. ACP documentation increased drastically. <b><i>Conclusion:</i></b> With no additional hospital resources and few workflow modifications, we established a functional transdisciplinary, collaborative team in support of YAs with sarcoma. Our model is both sustainable and adaptable to other cancer types and care settings.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"474-481"},"PeriodicalIF":1.2,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144024715","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-01Epub Date: 2025-04-30DOI: 10.1089/jayao.2025.0009
Andrew Murnane, Nicole Kiss, Jeremy Lewin, Steve F Fraser, Anna Ugalde
Purpose: The aim of this study is to understand how adolescent and young adult cancer survivors (AYA-CS) interact with exercise and nutrition information and programs after treatment, to explore their experiences in accessing these supports, and to identify where they perceive gaps to be in their care. This will include the perspectives of both AYA-CS and the health care professionals who deliver these services. Methods: A qualitative study using semistructured interviews, undertaken via Zoom. Group 1 consisted of AYA-CS, aged between 15 and 25 years of age at the time of diagnosis who had completed their primary treatment. Group 2 was made up of oncology health care professionals including medical, nursing, and allied health professionals who had a minimum of 2 years' experience working with AYA cancer patients. Thematic analysis was conducted in an inductive manner to develop themes reflecting the needs and experiences of AYA-CS. Results: Eleven AYA-CS and seven health care professionals, from Australia, treated and working across adult and pediatric settings participated in the interviews. The analysis identified three primary themes "The ongoing impacts of a cancer diagnosis," "age as a critical construct," and "delivering optimal care." Conclusions: Findings highlight the number of challenges young people face in accessing necessary well-being supports post-treatment, emphasizing the need for individualized exercise and diet interventions. There is a need for health care services to better identify and tailor support for AYA-CS to ensure that their needs are met. Further research is needed to integrate these priorities into clinical practice.
{"title":"Optimizing Support for Adolescent and Young Adult Cancer Survivors: Recommendations on Exercise, Nutrition, and Post-Treatment Care Needs from a Qualitative Study.","authors":"Andrew Murnane, Nicole Kiss, Jeremy Lewin, Steve F Fraser, Anna Ugalde","doi":"10.1089/jayao.2025.0009","DOIUrl":"10.1089/jayao.2025.0009","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> The aim of this study is to understand how adolescent and young adult cancer survivors (AYA-CS) interact with exercise and nutrition information and programs after treatment, to explore their experiences in accessing these supports, and to identify where they perceive gaps to be in their care. This will include the perspectives of both AYA-CS and the health care professionals who deliver these services. <b><i>Methods:</i></b> A qualitative study using semistructured interviews, undertaken via Zoom. Group 1 consisted of AYA-CS, aged between 15 and 25 years of age at the time of diagnosis who had completed their primary treatment. Group 2 was made up of oncology health care professionals including medical, nursing, and allied health professionals who had a minimum of 2 years' experience working with AYA cancer patients. Thematic analysis was conducted in an inductive manner to develop themes reflecting the needs and experiences of AYA-CS. <b><i>Results:</i></b> Eleven AYA-CS and seven health care professionals, from Australia, treated and working across adult and pediatric settings participated in the interviews. The analysis identified three primary themes \"<i>The ongoing impacts of a cancer diagnosis</i>,\" \"<i>age as a critical construct</i>,\" and \"<i>delivering optimal care</i>.\" <b><i>Conclusions:</i></b> Findings highlight the number of challenges young people face in accessing necessary well-being supports post-treatment, emphasizing the need for individualized exercise and diet interventions. There is a need for health care services to better identify and tailor support for AYA-CS to ensure that their needs are met. Further research is needed to integrate these priorities into clinical practice.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"466-473"},"PeriodicalIF":1.2,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143984099","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-01Epub Date: 2025-05-07DOI: 10.1089/jayao.2024.0150
Line Bentsen, Vera Belgers, Annamaria Giraldi, Annika von Heymann, Christoffer Johansen, Karin Piil, Helle Pappot
Purpose: Adolescents and young adults (AYAs) diagnosed with cancer face unique psychosocial challenges, including sexual complaints. Despite the prevalence of these sexual issues, they are underexplored in AYA oncology care. The aim of this study is firstly to examine the prevalence of sexual complaints among AYAs with cancer across genders, age groups, and types of cancer. Second, we explore the association between sexual complaints and depressive symptoms. Methods: This cross-sectional sub-study included 305 AYAs (aged 15-39 at diagnosis) actively affiliated with the oncology department at Copenhagen University Hospital-Rigshospitalet. Participants completed questionnaires assessing sexual complaints and depressive symptoms. Sexual problems, distress, satisfaction, and willingness to discuss these issues were analyzed alongside demographic, clinical, and treatment data. Univariate and multivariable regression analyses evaluated associations with depressive symptoms. Results: Sexual problems affected 63.9% of AYAs, 49.5% experienced sexual distress, and 58.4% were dissatisfied with their sexual lives. Younger AYAs reported higher sexual satisfaction than older AYAs. Sexual distress, dissatisfaction, and reluctance to discuss sexual issues were associated with increased depressive symptoms in the univariate analysis. In the multivariable model, sexual distress remained independently associated with depressive symptoms, alongside age at diagnosis, civil status, cancer type, and pain. Conclusion: Sexual complaints, particularly distress, are prevalent among AYAs with cancer and are significantly associated with depressive symptoms. Integrating routine discussions about sexual health into oncology care could probably improve mental health outcomes and overall quality of life for this vulnerable group. Future research should focus on targeted interventions to address these interconnected challenges.
{"title":"Prevalence and Impact of Sexual Complaints on Depressive Symptoms in Adolescents and Young Adults with Cancer: A Cross-Sectional Sub-Study.","authors":"Line Bentsen, Vera Belgers, Annamaria Giraldi, Annika von Heymann, Christoffer Johansen, Karin Piil, Helle Pappot","doi":"10.1089/jayao.2024.0150","DOIUrl":"10.1089/jayao.2024.0150","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Adolescents and young adults (AYAs) diagnosed with cancer face unique psychosocial challenges, including sexual complaints. Despite the prevalence of these sexual issues, they are underexplored in AYA oncology care. The aim of this study is firstly to examine the prevalence of sexual complaints among AYAs with cancer across genders, age groups, and types of cancer. Second, we explore the association between sexual complaints and depressive symptoms. <b><i>Methods:</i></b> This cross-sectional sub-study included 305 AYAs (aged 15-39 at diagnosis) actively affiliated with the oncology department at Copenhagen University Hospital-Rigshospitalet. Participants completed questionnaires assessing sexual complaints and depressive symptoms. Sexual problems, distress, satisfaction, and willingness to discuss these issues were analyzed alongside demographic, clinical, and treatment data. Univariate and multivariable regression analyses evaluated associations with depressive symptoms. <b><i>Results:</i></b> Sexual problems affected 63.9% of AYAs, 49.5% experienced sexual distress, and 58.4% were dissatisfied with their sexual lives. Younger AYAs reported higher sexual satisfaction than older AYAs. Sexual distress, dissatisfaction, and reluctance to discuss sexual issues were associated with increased depressive symptoms in the univariate analysis. In the multivariable model, sexual distress remained independently associated with depressive symptoms, alongside age at diagnosis, civil status, cancer type, and pain. <b><i>Conclusion:</i></b> Sexual complaints, particularly distress, are prevalent among AYAs with cancer and are significantly associated with depressive symptoms. Integrating routine discussions about sexual health into oncology care could probably improve mental health outcomes and overall quality of life for this vulnerable group. Future research should focus on targeted interventions to address these interconnected challenges.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"482-493"},"PeriodicalIF":1.2,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144036091","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-01Epub Date: 2025-05-02DOI: 10.1089/jayao.2025.0014
Deborah J Critoph, Luke A M Smith, Rachel M Taylor, Helen Hatcher, Alison Finch, Robbie Duschinsky, Anna Spathis
{"title":"Triadic Communication-Naming the Third Person.","authors":"Deborah J Critoph, Luke A M Smith, Rachel M Taylor, Helen Hatcher, Alison Finch, Robbie Duschinsky, Anna Spathis","doi":"10.1089/jayao.2025.0014","DOIUrl":"10.1089/jayao.2025.0014","url":null,"abstract":"","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"463-465"},"PeriodicalIF":1.2,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143970170","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Purpose: In hormone therapy for premenopausal breast cancer (BC), gonadotropin-releasing hormone (GnRH) agonist (GnRHa) formulations, especially long-acting formulations, are often used in combination with tamoxifen (TAM). On the other hand, in recent years, endocrine therapy is increasingly interrupted to achieve pregnancy. Here, we examined ovarian function and the timing of resumption of menstruation after the interruption of GnRHa therapy. Methods: Fertility preservation patients with BC who visited our hospital between January 2010 and August 2023 and who interrupted endocrine therapy with a GnRHa formulation were included. Information on 22 cases (24 cycles), including two interruptions due to the desire for a second child, was collected from medical records and examined retrospectively. Results: Three cases started assisted reproductive technology treatments before menstruation resumed and were excluded from the analysis. Menstruation resumed at approximately 7, 9, and 12 months from the last dose of the 1-, 3-, and 6-month GnRHa formulations, respectively. The long delay of menstruation resumption was presumably caused by the use of (1) the 3-month formulation in the 6 months before the last GnRHa dose, (2) the 6-month formulation in the 12 months before the last dose, and (3) TAM when menstruation resumed. Conclusions: In BC patients who may seek pregnancy after interrupting endocrine therapy, it may be easier to estimate the timing of resumption of menstruation if the use of long-term GnRHa depot formulations is avoided for >6 months before the interruption. BC endocrine therapy should be optimized to achieve pregnancy and childbirth as soon as possible during its interruption.
{"title":"A Study on the Timing of Resumption of Menstruation After Interruption/Termination of GnRH Agonist Therapy in Premenopausal Breast Cancer Patients.","authors":"Kahori Takei, Haipeng Huang, Hazuki Sato, Soichiro Kashiwabara, Kouki Samejima, Shigetaka Matsunaga, Yasushi Takai","doi":"10.1177/21565333251394139","DOIUrl":"10.1177/21565333251394139","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> In hormone therapy for premenopausal breast cancer (BC), gonadotropin-releasing hormone (GnRH) agonist (GnRHa) formulations, especially long-acting formulations, are often used in combination with tamoxifen (TAM). On the other hand, in recent years, endocrine therapy is increasingly interrupted to achieve pregnancy. Here, we examined ovarian function and the timing of resumption of menstruation after the interruption of GnRHa therapy. <b><i>Methods:</i></b> Fertility preservation patients with BC who visited our hospital between January 2010 and August 2023 and who interrupted endocrine therapy with a GnRHa formulation were included. Information on 22 cases (24 cycles), including two interruptions due to the desire for a second child, was collected from medical records and examined retrospectively. <b><i>Results:</i></b> Three cases started assisted reproductive technology treatments before menstruation resumed and were excluded from the analysis. Menstruation resumed at approximately 7, 9, and 12 months from the last dose of the 1-, 3-, and 6-month GnRHa formulations, respectively. The long delay of menstruation resumption was presumably caused by the use of (1) the 3-month formulation in the 6 months before the last GnRHa dose, (2) the 6-month formulation in the 12 months before the last dose, and (3) TAM when menstruation resumed. <b><i>Conclusions:</i></b> In BC patients who may seek pregnancy after interrupting endocrine therapy, it may be easier to estimate the timing of resumption of menstruation if the use of long-term GnRHa depot formulations is avoided for >6 months before the interruption. BC endocrine therapy should be optimized to achieve pregnancy and childbirth as soon as possible during its interruption.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145488753","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-21DOI: 10.1177/21565333251397787
Vinayak Venkataraman, Bridgette Merriman, Anna Revette, Brett Nava-Coulter, Suzanne George, David S Shulman, Katie A Greenzang
Purpose: Adolescents and young adults (AYAs; 15-39 years) with sarcoma undergo intensive therapies during a vulnerable time in their lives. We aimed to characterize the unmet needs of AYAs with sarcoma to inform strategies that improve outcomes. Methods: We used purposive sampling to conduct semistructured focus groups of AYAs with sarcoma treated primarily at Dana-Farber Cancer Institute. Focus groups were conducted via Zoom by trained moderators and focused on experiences with treatment, decision-making, care communication, supportive care services, and the effects of cancer on daily life. Focus groups were audio recorded, transcribed, and thematically analyzed via a team-based approach. Results: We conducted four focus groups with 20 participants (16-34 years) adolescents, emerging adults, young adults, and those with recurrent/metastatic disease. Participants confirmed that sarcoma and its treatment affected their physical, emotional, social, and economic health. We identified three key overarching themes: (1) Disruption to agency and mobility negatively impacted well-being and social relations; (2) The transition from "active treatment" to "surveillance" was fraught as it often magnified challenges of "returning to normal" and loss of autonomy; and (3) Additional supports and services may help address identified unmet needs and gaps in care. Participants expressed a desire for support services to be introduced earlier to help facilitate independence. Conclusion: AYAs with sarcoma experience loss of agency, mobility, and impaired well-being due to their diagnoses and treatments. They desire early introduction of supportive services, and care teams can proactively address these challenges by connecting patients with targeted services, resources, tools, and community.
{"title":"Disrupted Independence-Supporting Adolescents and Young Adults with Sarcoma in Maintaining Autonomy: A Qualitative Study.","authors":"Vinayak Venkataraman, Bridgette Merriman, Anna Revette, Brett Nava-Coulter, Suzanne George, David S Shulman, Katie A Greenzang","doi":"10.1177/21565333251397787","DOIUrl":"https://doi.org/10.1177/21565333251397787","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Adolescents and young adults (AYAs; 15-39 years) with sarcoma undergo intensive therapies during a vulnerable time in their lives. We aimed to characterize the unmet needs of AYAs with sarcoma to inform strategies that improve outcomes. <b><i>Methods:</i></b> We used purposive sampling to conduct semistructured focus groups of AYAs with sarcoma treated primarily at Dana-Farber Cancer Institute. Focus groups were conducted via Zoom by trained moderators and focused on experiences with treatment, decision-making, care communication, supportive care services, and the effects of cancer on daily life. Focus groups were audio recorded, transcribed, and thematically analyzed via a team-based approach. <b><i>Results:</i></b> We conducted four focus groups with 20 participants (16-34 years) adolescents, emerging adults, young adults, and those with recurrent/metastatic disease. Participants confirmed that sarcoma and its treatment affected their physical, emotional, social, and economic health. We identified three key overarching themes: (1) Disruption to agency and mobility negatively impacted well-being and social relations; (2) The transition from \"active treatment\" to \"surveillance\" was fraught as it often magnified challenges of \"returning to normal\" and loss of autonomy; and (3) Additional supports and services may help address identified unmet needs and gaps in care. Participants expressed a desire for support services to be introduced earlier to help facilitate independence. <b><i>Conclusion:</i></b> AYAs with sarcoma experience loss of agency, mobility, and impaired well-being due to their diagnoses and treatments. They desire early introduction of supportive services, and care teams can proactively address these challenges by connecting patients with targeted services, resources, tools, and community.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-11-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145573790","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-17DOI: 10.1177/21565333251398494
Megan M Griffith, Emre Sezgin, Tanvi Karkare, Charleen I Roche, Jennifer English, Anthony Audino, Kathleen E Montgomery, Amanda J Saraf, Gwendolyn P Quinn, Ashley J Housten, Michael Scherer, Megan Scherer, Leena Nahata
Purpose: Approximately half of male childhood cancer survivors experience treatment-related fertility impairment. Regrets about missed sperm banking opportunities have been reported, yet few decision tools for male adolescents with cancer exist. This study aims to report the development, testing, and adaptation of the Family-centered Adolescent Sperm banking values clarification Tool (FAST) using an iterative, user-centered design with male adolescents with cancer and their caregivers and to obtain feedback from clinicians and community partners. Methods: Males (12-25 years, diagnosed with cancer in the past year, received a routine fertility consult where sperm banking was offered) and caregivers completed the FAST on a screen-recorded device, a semi-structured interview, the System Usability Scale (SUS), and a sociodemographic questionnaire. Feedback informed FAST adaptations and was documented using the Framework for Reporting Adaptations and Modifications-Expanded. Descriptive statistics and thematic analysis characterized FAST completion information. Results: Ten families (16 caregivers, 9 adolescents) enrolled. Themes included: ease of navigation, perceived usefulness of the FAST, and perspectives on tool adaptations. Forty-three FAST adaptations were made in response to participant feedback. Median FAST completion time was 5 minutes and 37 seconds. The mean FAST SUS score was high at 84.60 (minimum = 57.50, maximum = 100, standard deviation = 11.08). Conclusions: Applying an iterative, user-centered approach, the FAST was developed, usability-tested, and adapted to a web-based format that families found easy to navigate and useful. Web-based tools, such as the FAST, could improve the sperm banking decision-making process for adolescent males and their caregivers by addressing unmet needs and ultimately improving satisfaction with fertility counseling outcomes.
{"title":"Implementing a User-Centered Design to Develop a Web-Based Sperm Banking Decision Tool for Adolescent Males with Cancer.","authors":"Megan M Griffith, Emre Sezgin, Tanvi Karkare, Charleen I Roche, Jennifer English, Anthony Audino, Kathleen E Montgomery, Amanda J Saraf, Gwendolyn P Quinn, Ashley J Housten, Michael Scherer, Megan Scherer, Leena Nahata","doi":"10.1177/21565333251398494","DOIUrl":"https://doi.org/10.1177/21565333251398494","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Approximately half of male childhood cancer survivors experience treatment-related fertility impairment. Regrets about missed sperm banking opportunities have been reported, yet few decision tools for male adolescents with cancer exist. This study aims to report the development, testing, and adaptation of the Family-centered Adolescent Sperm banking values clarification Tool (FAST) using an iterative, user-centered design with male adolescents with cancer and their caregivers and to obtain feedback from clinicians and community partners. <b><i>Methods:</i></b> Males (12-25 years, diagnosed with cancer in the past year, received a routine fertility consult where sperm banking was offered) and caregivers completed the FAST on a screen-recorded device, a semi-structured interview, the System Usability Scale (SUS), and a sociodemographic questionnaire. Feedback informed FAST adaptations and was documented using the Framework for Reporting Adaptations and Modifications-Expanded. Descriptive statistics and thematic analysis characterized FAST completion information. <b><i>Results:</i></b> Ten families (16 caregivers, 9 adolescents) enrolled. Themes included: ease of navigation, perceived usefulness of the FAST, and perspectives on tool adaptations. Forty-three FAST adaptations were made in response to participant feedback. Median FAST completion time was 5 minutes and 37 seconds. The mean FAST SUS score was high at 84.60 (minimum = 57.50, maximum = 100, standard deviation = 11.08). <b><i>Conclusions:</i></b> Applying an iterative, user-centered approach, the FAST was developed, usability-tested, and adapted to a web-based format that families found easy to navigate and useful. Web-based tools, such as the FAST, could improve the sperm banking decision-making process for adolescent males and their caregivers by addressing unmet needs and ultimately improving satisfaction with fertility counseling outcomes.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-11-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145563750","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-17DOI: 10.1177/21565333251393832
Nicholas D Yeager, Kari L Bjornard
{"title":"Fertility and Sexual Health in the Adolescent and Young Adult Oncology Population.","authors":"Nicholas D Yeager, Kari L Bjornard","doi":"10.1177/21565333251393832","DOIUrl":"https://doi.org/10.1177/21565333251393832","url":null,"abstract":"","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-11-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145563729","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-14DOI: 10.1177/21565333251399057
Brad Zebrack, Fenghai Duan, Steve Cole, Ilana Gareen, Pinki Prasad, JoRean Sicks, Christabel Cheung, Andrew Evens, Lauren Ghazal, Shira Dinner, Adam Duvall, Susan K Parsons, John Salsman, Brad Kahl, Melissa Simon, Lynne Wagner
{"title":"Social Genomic Mechanisms of Health Disparities Among Adolescent/Young Adult Survivors of Hodgkin and Non-Hodgkin Lymphoma: ECOG-ACRIN E.","authors":"Brad Zebrack, Fenghai Duan, Steve Cole, Ilana Gareen, Pinki Prasad, JoRean Sicks, Christabel Cheung, Andrew Evens, Lauren Ghazal, Shira Dinner, Adam Duvall, Susan K Parsons, John Salsman, Brad Kahl, Melissa Simon, Lynne Wagner","doi":"10.1177/21565333251399057","DOIUrl":"https://doi.org/10.1177/21565333251399057","url":null,"abstract":"","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-11-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145563753","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}