Pub Date : 2025-12-23DOI: 10.1177/21565333251407898
Dori M Beeler, Susan Yaguda, Jennifer Pope
Childhood cancer survivors (CCS) who completed treatment and are disease-free face long-term care transition challenges. This quality improvement (QI) study explored CCS needs and captured feedback for the Adult Survivors of Childhood Cancer Clinic (ASCC) program development. Participants were predominantly White and female; ages ranged from 1 to 17 years at diagnosis and 18 to 34 years at the time of the study. Surveys (n = 47) and interviews (n = 5) focused on the voice of the ASCC patient. REDCap facilitated descriptive survey analysis, while the rapid analysis of interviews identified high-level themes aligned with the survey findings. Nutrition and mental health needs were ranked equally as the top needs, and rapid interview analysis identified noteworthy gender-specific trends. Integrating the patient perspective helps ensure clinic programming is tailored to the patients it serves.
{"title":"Adult Survivors of Childhood Cancer Unmet Needs: A Quality Improvement Brief Report.","authors":"Dori M Beeler, Susan Yaguda, Jennifer Pope","doi":"10.1177/21565333251407898","DOIUrl":"https://doi.org/10.1177/21565333251407898","url":null,"abstract":"<p><p>Childhood cancer survivors (CCS) who completed treatment and are disease-free face long-term care transition challenges. This quality improvement (QI) study explored CCS needs and captured feedback for the Adult Survivors of Childhood Cancer Clinic (ASCC) program development. Participants were predominantly White and female; ages ranged from 1 to 17 years at diagnosis and 18 to 34 years at the time of the study. Surveys (n = 47) and interviews (n = 5) focused on the voice of the ASCC patient. REDCap facilitated descriptive survey analysis, while the rapid analysis of interviews identified high-level themes aligned with the survey findings. Nutrition and mental health needs were ranked equally as the top needs, and rapid interview analysis identified noteworthy gender-specific trends. Integrating the patient perspective helps ensure clinic programming is tailored to the patients it serves.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145856165","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 : 2025-12-22DOI: 10.1177/21565333251406895
Kimberly L Klages, Ahna L H Pai, Alexandra M Psihogios
Objective: Fatigue is a prevalent and debilitating problem in adolescents and young adults (AYAs) with cancer. AYAs with acute lymphoblastic leukemia (ALL) are at particular risk for fatigue. Other factors, such as pain, nausea, and negative mood, have also been identified as contributors to cancer-related fatigue in cross-sectional studies. Because these states rapidly fluctuate, they may also serve as important time-varying predictors of fatigue. The purpose of this study was to determine whether current pain, nausea, and negative mood predict subsequent fatigue in AYAs during maintenance therapy and whether these relationships are moderated by sociodemographic factors. Methods: Eighteen AYAs (Mage = 17.90) completed a baseline demographic questionnaire and once-daily diaries to assess current fatigue, pain, nausea, and negative mood over a 28-day period during maintenance treatment. Dynamic structural equation modeling was used to examine whether pain, nausea, or negative mood predicts next-day fatigue, and if specific demographic variables, age, biological sex, race, ethnicity, and insurance status (public vs. private) moderated these relationships. Results: Pain significantly predicted next-day fatigue in AYAs (Est. = 0.35, p < 0.001), and age was the only significant moderator of this relationship (Est. = -0.13, p < 0.001). Nausea and negative mood did not significantly predict next-day fatigue. Conclusions: Pain positively predicted next-day fatigue, and the effect of pain as a predictor of fatigue was found to decrease with age. Routine pain assessments that trigger timely, in-the-moment interventions may help alleviate current pain and reduce near-term fatigue in AYAs with ALL during maintenance treatment, especially among younger adolescents.
目的:疲劳是青少年和年轻成人(AYAs)癌症患者普遍存在的衰弱问题。患有急性淋巴细胞白血病(ALL)的aya特别容易出现疲劳。在横断面研究中,其他因素,如疼痛、恶心和消极情绪,也被确定为导致癌症相关疲劳的因素。由于这些状态波动迅速,它们也可以作为疲劳的重要时变预测因子。本研究的目的是确定当前的疼痛、恶心和负面情绪是否可以预测维持治疗期间aya患者随后的疲劳,以及这些关系是否受到社会人口因素的调节。方法:18名asa(年龄17.90)完成了基线人口调查问卷和每日一次的日记,以评估维持治疗期间28天内的当前疲劳、疼痛、恶心和负面情绪。动态结构方程模型用于检验疼痛、恶心或消极情绪是否预测第二天的疲劳,以及特定的人口统计学变量、年龄、生理性别、种族、民族和保险状况(公共与私人)是否调节了这些关系。结果:疼痛显著预测aya患者第二天的疲劳(Est. = 0.35, p < 0.001),年龄是唯一显著调节这种关系的因素(Est. = -0.13, p < 0.001)。恶心和消极情绪对第二天的疲劳无显著影响。结论:疼痛积极预测第二天的疲劳,并且疼痛作为疲劳的预测因子的作用随着年龄的增长而减弱。常规疼痛评估触发及时的、即时的干预可能有助于缓解急性淋巴细胞白血病患者在维持治疗期间的当前疼痛和减少近期疲劳,特别是在年轻的青少年中。
{"title":"Pain Predicts Next-Day Fatigue in Adolescents and Young Adults Receiving Maintenance Treatment for Acute Lymphoblastic Leukemia.","authors":"Kimberly L Klages, Ahna L H Pai, Alexandra M Psihogios","doi":"10.1177/21565333251406895","DOIUrl":"https://doi.org/10.1177/21565333251406895","url":null,"abstract":"<p><p><b><i>Objective:</i></b> Fatigue is a prevalent and debilitating problem in adolescents and young adults (AYAs) with cancer. AYAs with acute lymphoblastic leukemia (ALL) are at particular risk for fatigue. Other factors, such as pain, nausea, and negative mood, have also been identified as contributors to cancer-related fatigue in cross-sectional studies. Because these states rapidly fluctuate, they may also serve as important time-varying predictors of fatigue. The purpose of this study was to determine whether current pain, nausea, and negative mood predict subsequent fatigue in AYAs during maintenance therapy and whether these relationships are moderated by sociodemographic factors. <b><i>Methods:</i></b> Eighteen AYAs (<i>M</i><sub>age</sub> = 17.90) completed a baseline demographic questionnaire and once-daily diaries to assess current fatigue, pain, nausea, and negative mood over a 28-day period during maintenance treatment. Dynamic structural equation modeling was used to examine whether pain, nausea, or negative mood predicts next-day fatigue, and if specific demographic variables, age, biological sex, race, ethnicity, and insurance status (public vs. private) moderated these relationships. <b><i>Results:</i></b> Pain significantly predicted next-day fatigue in AYAs (<i>Est.</i> = 0.35, <i>p</i> < 0.001), and age was the only significant moderator of this relationship (<i>Est.</i> = -0.13, <i>p</i> < 0.001). Nausea and negative mood did not significantly predict next-day fatigue. <b><i>Conclusions:</i></b> Pain positively predicted next-day fatigue, and the effect of pain as a predictor of fatigue was found to decrease with age. Routine pain assessments that trigger timely, in-the-moment interventions may help alleviate current pain and reduce near-term fatigue in AYAs with ALL during maintenance treatment, especially among younger adolescents.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-12-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145833904","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 : 2025-12-09DOI: 10.1177/21565333251405138
Brittany J Ritzman, Joseph Sakel, Ryan Heumann, Oseme Okoruwa, Bridget Hawryluk, Courtney Moore, Lisa Parks, Brandon Cockrum, Dustin Lynch, Andrea Kiser, Sarah Wiehe, Kara Garcia, Tammy Sajdyk
While cancer has sustained impacts on survivors, no unified strategy exists to assess the ongoing needs of survivors. Adolescent and young adult (AYA) cancer survivors have unique needs and concerns related to their life stages, including education, career, relationships, and family planning, all of which may be impacted by cancer and its treatments. In this study, we co-designed with survivors a distributable digital tool for assessing needs among this population. Because of known disparities in outcomes for survivors in rural or medically underserved areas, initial tool development focused on feedback from AYA survivors in one such region (Southwest Indiana).
{"title":"Developing a Tool to Assess Needs of AYA Cancer Survivors in Rural, Medically Underserved Regions of Southwestern Indiana.","authors":"Brittany J Ritzman, Joseph Sakel, Ryan Heumann, Oseme Okoruwa, Bridget Hawryluk, Courtney Moore, Lisa Parks, Brandon Cockrum, Dustin Lynch, Andrea Kiser, Sarah Wiehe, Kara Garcia, Tammy Sajdyk","doi":"10.1177/21565333251405138","DOIUrl":"https://doi.org/10.1177/21565333251405138","url":null,"abstract":"<p><p>While cancer has sustained impacts on survivors, no unified strategy exists to assess the ongoing needs of survivors. Adolescent and young adult (AYA) cancer survivors have unique needs and concerns related to their life stages, including education, career, relationships, and family planning, all of which may be impacted by cancer and its treatments. In this study, we co-designed with survivors a distributable digital tool for assessing needs among this population. Because of known disparities in outcomes for survivors in rural or medically underserved areas, initial tool development focused on feedback from AYA survivors in one such region (Southwest Indiana).</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-12-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145833981","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}
With the increasing number cancer survivors treated during pediatric, adolescent and young adult (AYA) ages, it has become essential to develop comprehensive long-term follow-up care tailored to each patient. The combination of being a cancer survivor and reaching AYA age at the time of long-term follow-up can make adherence to the proposed follow-up care challenging. To overcome the difficulties associated with the lack of follow-up, it is important to identify supportive care needs (SCN) for this population using effective tools. The main objective of this systematic review was to explore the screening tools for SCN used in long-term follow-up of survivors who have reached AYA age. We conducted a literature search on PubMed, Cochrane, and Science Direct for studies published since 2004. Articles were screened independently by two reviewers. Data were extracted and descriptive analyses were performed. Of the 3968 articles found, 14 met the inclusion criteria. Seven studies used tools specifically designed for the study that were not previously validated. The three tools used in the other seven studies encompassed an average of only 2.8 SCN per study. The tools currently used in clinical practice are insufficient to provide a comprehensive assessment of the SCN of AYA-aged survivors during long-term follow-up.
{"title":"Use of Screening Tools to Measure Supportive Care Needs in Former Cancer Patients of Adolescent and Young Adult Age: A Systematic Review of the Literature.","authors":"Amandine Bertrand, Valentine Baudry, Celine Bodelet, Magali Girodet, Véronique Christophe","doi":"10.1089/jayao.2024.0108","DOIUrl":"10.1089/jayao.2024.0108","url":null,"abstract":"<p><p>With the increasing number cancer survivors treated during pediatric, adolescent and young adult (AYA) ages, it has become essential to develop comprehensive long-term follow-up care tailored to each patient. The combination of being a cancer survivor and reaching AYA age at the time of long-term follow-up can make adherence to the proposed follow-up care challenging. To overcome the difficulties associated with the lack of follow-up, it is important to identify supportive care needs (SCN) for this population using effective tools. The main objective of this systematic review was to explore the screening tools for SCN used in long-term follow-up of survivors who have reached AYA age. We conducted a literature search on PubMed, Cochrane, and Science Direct for studies published since 2004. Articles were screened independently by two reviewers. Data were extracted and descriptive analyses were performed. Of the 3968 articles found, 14 met the inclusion criteria. Seven studies used tools specifically designed for the study that were not previously validated. The three tools used in the other seven studies encompassed an average of only 2.8 SCN per study. The tools currently used in clinical practice are insufficient to provide a comprehensive assessment of the SCN of AYA-aged survivors during long-term follow-up.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"455-462"},"PeriodicalIF":1.2,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143648773","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: 2025-03-25DOI: 10.1089/jayao.2024.0151
David H Noyd, Anna Bailey, Amanda Janitz, Talayeh Razzaghi, Sharon Bouvette, William Beasley, Ashley Baker, Sixia Chen, David Bard
Purpose: Cardiovascular risk factors (CVRFs) later in life potentiate risk for late cardiovascular disease (CVD) from cardiotoxic treatment among survivors. This study evaluated the association of baseline CVRFs and CVD in the early survivorship period. Methods: This analysis included patients ages 0-29 at initial diagnosis and reported in the institutional cancer registry between 2010 and 2017 (n = 1228). Patients who died within 5 years (n = 168), those not seen in the oncology clinic (n = 312), and those with CVD within one year of diagnosis (n = 17) were excluded. CVRFs (hypertension, diabetes, dyslipidemia, and obesity) within 1 year of initial diagnosis were constructed and extracted from the electronic health record based on discrete observations, ICD9/10 codes, and RxNorm codes for antihypertensives. Results: Among survivors (n = 731), 10 incident cases (1.4%) of CVD were observed between 1 and 5 years after the initial diagnosis. Public health insurance (p = 0.04) and late effects risk strata (p = 0.01) were positively associated with CVD. Among survivors with public insurance (n = 495), two additional cases of CVD were identified from claims data with an incidence of 2.4%. Survivors from rural areas had a 4.1 times greater risk of CVD compared with survivors from urban areas (95% CI: 1.1-15.3), despite adjustment for late effects risk strata. Conclusion: Clinically computable phenotypes for CVRFs among survivors through informatics methods were feasible. Although CVRFs were not associated with CVD in the early survivorship period, survivors from rural areas were more likely to develop CVD.
{"title":"Rurality, Cardiovascular Risk Factors, and Early Cardiovascular Disease Among Childhood, Adolescent, and Young Adult Cancer Survivors.","authors":"David H Noyd, Anna Bailey, Amanda Janitz, Talayeh Razzaghi, Sharon Bouvette, William Beasley, Ashley Baker, Sixia Chen, David Bard","doi":"10.1089/jayao.2024.0151","DOIUrl":"10.1089/jayao.2024.0151","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Cardiovascular risk factors (CVRFs) later in life potentiate risk for late cardiovascular disease (CVD) from cardiotoxic treatment among survivors. This study evaluated the association of baseline CVRFs and CVD in the early survivorship period. <b><i>Methods:</i></b> This analysis included patients ages 0-29 at initial diagnosis and reported in the institutional cancer registry between 2010 and 2017 (<i>n</i> = 1228). Patients who died within 5 years (<i>n</i> = 168), those not seen in the oncology clinic (<i>n</i> = 312), and those with CVD within one year of diagnosis (<i>n</i> = 17) were excluded. CVRFs (hypertension, diabetes, dyslipidemia, and obesity) within 1 year of initial diagnosis were constructed and extracted from the electronic health record based on discrete observations, ICD9/10 codes, and RxNorm codes for antihypertensives. <b><i>Results:</i></b> Among survivors (<i>n</i> = 731), 10 incident cases (1.4%) of CVD were observed between 1 and 5 years after the initial diagnosis. Public health insurance (<i>p</i> = 0.04) and late effects risk strata (<i>p</i> = 0.01) were positively associated with CVD. Among survivors with public insurance (<i>n</i> = 495), two additional cases of CVD were identified from claims data with an incidence of 2.4%. Survivors from rural areas had a 4.1 times greater risk of CVD compared with survivors from urban areas (95% CI: 1.1-15.3), despite adjustment for late effects risk strata. <b><i>Conclusion:</i></b> Clinically computable phenotypes for CVRFs among survivors through informatics methods were feasible. Although CVRFs were not associated with CVD in the early survivorship period, survivors from rural areas were more likely to develop CVD.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"516-524"},"PeriodicalIF":1.2,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143700416","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.2024.0023
Nidia Rodriguez-Ormaza, Paul L Delamater, Melissa A Troester, Stephanie B Wheeler, Christopher D Baggett, Clare Meernik, Jennifer E Mersereau, Valerie L Baker, Ethan Wantman, Hazel B Nichols
Purpose: Adolescent and young adult (AYA) women facing gonadotoxic cancer treatments are recommended to consider fertility preservation. However, fertility clinics are scarce in number and location. We describe geographic access to fertility clinics in a statewide cancer population. Methods: This cross-sectional study included 5,632 AYA women from the North Carolina Central Cancer Registry diagnosed with lymphoma, breast, or gynecological cancers who received gonadotoxic treatment during 2004-2015. Geographic access was defined as travel time from patient residence to the nearest fertility clinic at diagnosis. Multivariable logistic regression was used to calculate prevalence odds ratios (POR) and 95% confidence intervals (CIs) for the association between travel time and individual and contextual factors (neighborhood socioeconomic status and rurality). Results: Mean travel time was 51 ± 42 minutes, and 42% of AYAs lived <30 minutes from a clinic. Black non-Hispanic women, those living in advantaged neighborhoods, metropolitan areas, and privately insured had shorter average travel times. Black non-Hispanic women were more likely to live <30 minutes from a clinic than their white non-Hispanic counterparts (POR = 3.3; 95% CI: 2.8-3.8). Publicly insured (vs privately) AYAs and those living in the most (vs least) deprived neighborhoods were 40% less likely to live within a 30-minute drive (POR for both = 0.6; 95% CI: 0.5-0.7). Compared to metropolitan areas, micropolitan (small city) residents were less likely to live <30 minutes from a clinic. Conclusion: The burden of travel time to fertility clinics showed important differences by race and ethnicity, neighborhood SES, insurance, and rurality. The results emphasize the need for tailored and multifaceted strategies to improve access.
{"title":"Travel Time to Fertility Specialty Care Among Reproductive-Age Cancer Survivors.","authors":"Nidia Rodriguez-Ormaza, Paul L Delamater, Melissa A Troester, Stephanie B Wheeler, Christopher D Baggett, Clare Meernik, Jennifer E Mersereau, Valerie L Baker, Ethan Wantman, Hazel B Nichols","doi":"10.1089/jayao.2024.0023","DOIUrl":"10.1089/jayao.2024.0023","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Adolescent and young adult (AYA) women facing gonadotoxic cancer treatments are recommended to consider fertility preservation. However, fertility clinics are scarce in number and location. We describe geographic access to fertility clinics in a statewide cancer population. <b><i>Methods:</i></b> This cross-sectional study included 5,632 AYA women from the North Carolina Central Cancer Registry diagnosed with lymphoma, breast, or gynecological cancers who received gonadotoxic treatment during 2004-2015. Geographic access was defined as travel time from patient residence to the nearest fertility clinic at diagnosis. Multivariable logistic regression was used to calculate prevalence odds ratios (POR) and 95% confidence intervals (CIs) for the association between travel time and individual and contextual factors (neighborhood socioeconomic status and rurality). <b><i>Results:</i></b> Mean travel time was 51 ± 42 minutes, and 42% of AYAs lived <30 minutes from a clinic. Black non-Hispanic women, those living in advantaged neighborhoods, metropolitan areas, and privately insured had shorter average travel times. Black non-Hispanic women were more likely to live <30 minutes from a clinic than their white non-Hispanic counterparts (POR = 3.3; 95% CI: 2.8-3.8). Publicly insured (vs privately) AYAs and those living in the most (vs least) deprived neighborhoods were 40% less likely to live within a 30-minute drive (POR for both = 0.6; 95% CI: 0.5-0.7). Compared to metropolitan areas, micropolitan (small city) residents were less likely to live <30 minutes from a clinic. <b><i>Conclusion:</i></b> The burden of travel time to fertility clinics showed important differences by race and ethnicity, neighborhood SES, insurance, and rurality. The results emphasize the need for tailored and multifaceted strategies to improve access.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"504-515"},"PeriodicalIF":1.2,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144036092","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: 2025-03-17DOI: 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}