Daniella N Flores, Scott Moerdler, Neil Palmisiano, Susan K Parsons, Michael E Roth, Katie A Devine
Purpose: Adolescent and young adult (AYA) survivors of acute lymphoblastic or myeloid leukemia diagnosed between the ages of 15 and 39 years are at risk for adverse late health effects following cancer treatment and require ongoing survivorship care. This study aims to understand the landscape of transitioning AYAs with leukemia from active treatment to survivorship care. Methods: A cross-sectional, anonymous online survey was sent out via listserv/email. Descriptive analyses were used to identify the proportion of providers whose institutions have AYA and/or survivorship programs, current practices in transitioning care, perspective on barriers and facilitators to transition, and preferred models of survivorship care. Differences by provider (i.e., adult medical oncologist vs. pediatric) were analyzed using chi-square or analysis of variance (ANOVA) analyses. Results: A total of 75 provider responses were analyzed; 51.4% of providers reported their institutions had an AYA program and over 80% had a survivorship program. Providers preferred the primary oncology team or survivorship specialist to address most survivorship care needs, except for the treatment of other comorbid conditions (primary care provider [PCP] preferred). Disease-related risks, lack of a PCP, and insurance concerns were commonly endorsed barriers to transition of care. Medical oncologists were more likely than pediatric providers to transition surveillance of new malignancies to PCPs. Conclusions: Providers preferred survivorship specialists to oversee AYA survivorship care, yet several barriers and concerns remain to implement the transition. Results indicate variability in transition care practices and preferences, particularly between medical and pediatric oncologists. Future work is needed to optimize transition practices to improve care for AYA survivors.
{"title":"Transition to Survivorship Care for Adolescents and Young Adults (AYAs) with Acute Leukemia: Provider Perspectives.","authors":"Daniella N Flores, Scott Moerdler, Neil Palmisiano, Susan K Parsons, Michael E Roth, Katie A Devine","doi":"10.1089/jayao.2024.0139","DOIUrl":"https://doi.org/10.1089/jayao.2024.0139","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Adolescent and young adult (AYA) survivors of acute lymphoblastic or myeloid leukemia diagnosed between the ages of 15 and 39 years are at risk for adverse late health effects following cancer treatment and require ongoing survivorship care. This study aims to understand the landscape of transitioning AYAs with leukemia from active treatment to survivorship care. <b><i>Methods:</i></b> A cross-sectional, anonymous online survey was sent out via listserv/email. Descriptive analyses were used to identify the proportion of providers whose institutions have AYA and/or survivorship programs, current practices in transitioning care, perspective on barriers and facilitators to transition, and preferred models of survivorship care. Differences by provider (i.e., adult medical oncologist vs. pediatric) were analyzed using chi-square or analysis of variance (ANOVA) analyses. <b><i>Results:</i></b> A total of 75 provider responses were analyzed; 51.4% of providers reported their institutions had an AYA program and over 80% had a survivorship program. Providers preferred the primary oncology team or survivorship specialist to address most survivorship care needs, except for the treatment of other comorbid conditions (primary care provider [PCP] preferred). Disease-related risks, lack of a PCP, and insurance concerns were commonly endorsed barriers to transition of care. Medical oncologists were more likely than pediatric providers to transition surveillance of new malignancies to PCPs. <b><i>Conclusions:</i></b> Providers preferred survivorship specialists to oversee AYA survivorship care, yet several barriers and concerns remain to implement the transition. Results indicate variability in transition care practices and preferences, particularly between medical and pediatric oncologists. Future work is needed to optimize transition practices to improve care for AYA survivors.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-01-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143005573","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}
Peyton R McDuffee, Molin Shi, Alexandra M Dunker, Emily J Smith, Nathan M Overholt, Sarah E Taghavi, Rebecca Eary, Brittany C Hall
The current study identified the fertility-related needs of young adult (YA; ages 19-39) survivors. Participants (n = 94) completed the Adolescent and Young Adult Survivorship Psycho-Oncology Screening Tool-a screening tool developed to assess cancer-related concerns of YAs in survivorship. Approximately one-third of survivors endorsed fertility-related concerns. Frequency of fertility-related concerns was endorsed in descending order: "not knowing fertility status/options," "cost of fertility treatment," "discussing fertility with others," and "grief over fertility." Relationship between fertility concerns and other commonly reported survivorship concerns was identified. Findings highlight a gap in care for fertility-related needs in post-treatment survivorship care for YAs.
{"title":"Closing the Gap: The Need for Fertility Intervention for Young Adult Cancer Survivors.","authors":"Peyton R McDuffee, Molin Shi, Alexandra M Dunker, Emily J Smith, Nathan M Overholt, Sarah E Taghavi, Rebecca Eary, Brittany C Hall","doi":"10.1089/jayao.2024.0126","DOIUrl":"https://doi.org/10.1089/jayao.2024.0126","url":null,"abstract":"<p><p>The current study identified the fertility-related needs of young adult (YA; ages 19-39) survivors. Participants (<i>n</i> = 94) completed the Adolescent and Young Adult Survivorship Psycho-Oncology Screening Tool-a screening tool developed to assess cancer-related concerns of YAs in survivorship. Approximately one-third of survivors endorsed fertility-related concerns. Frequency of fertility-related concerns was endorsed in descending order: \"not knowing fertility status/options,\" \"cost of fertility treatment,\" \"discussing fertility with others,\" and \"grief over fertility.\" Relationship between fertility concerns and other commonly reported survivorship concerns was identified. Findings highlight a gap in care for fertility-related needs in post-treatment survivorship care for YAs.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-01-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143005570","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}
Over a half million children are living with cancer in the United States. Social media platforms offer unique opportunities for cancer communication by public health organizations as well as health care providers, scientists, patients, and caregivers. Given the dearth of research on childhood cancer communication, the present study aimed to examine the nature of tweets on the social media platform X (formerly Twitter) that used the hashtag #childhoodcancer, the types of these tweets that attracted the most retweets, the types of users tweeting about childhood cancer (e.g., individuals, health care professionals), and the nature of tweets made by the different types of users. We performed a content analysis of tweets we captured on X via NCapture in October and December 2022. Of the 3217 tweets captured, we randomly sampled 1000 eligible tweets and manually double-coded them. Interrater agreement was 83% (κ = 0.75). Results revealed six themes in the tweets, including fundraising (21.2%), advocacy (20.2%), motivational (17.5%), educational (15.3%), science (12.8%), and shout-outs (12.1%). Motivational, advocacy, and science tweets attracted more retweets than fundraising tweets and shout-outs (p < 0.001). Individuals (i.e., patients, caregivers, and advocates tweeting on their own behalf) and nonprofit organizations made a majority of the tweets at 41.5% and 38.6%, respectively, followed by health care professionals (8.7%), academic and/or medical centers (4.2%), and for-profit companies (3.5%). Childhood cancer communication on X is dominated by individuals doing advocacy and fundraising. X may provide important opportunities for public health messaging and science communication about childhood cancer.
{"title":"A Content Analysis of #Childhoodcancer Chatter on X.","authors":"Sherry Pagoto, Cameron Cordaway, Andie Napolitano, Jessica Foy, Cindy Pan, Keith Bellizzi","doi":"10.1089/jayao.2024.0117","DOIUrl":"https://doi.org/10.1089/jayao.2024.0117","url":null,"abstract":"<p><p>Over a half million children are living with cancer in the United States. Social media platforms offer unique opportunities for cancer communication by public health organizations as well as health care providers, scientists, patients, and caregivers. Given the dearth of research on childhood cancer communication, the present study aimed to examine the nature of tweets on the social media platform X (formerly Twitter) that used the hashtag #childhoodcancer, the types of these tweets that attracted the most retweets, the types of users tweeting about childhood cancer (e.g., individuals, health care professionals), and the nature of tweets made by the different types of users. We performed a content analysis of tweets we captured on X via NCapture in October and December 2022. Of the 3217 tweets captured, we randomly sampled 1000 eligible tweets and manually double-coded them. Interrater agreement was 83% (κ = 0.75). Results revealed six themes in the tweets, including fundraising (21.2%), advocacy (20.2%), motivational (17.5%), educational (15.3%), science (12.8%), and shout-outs (12.1%). Motivational, advocacy, and science tweets attracted more retweets than fundraising tweets and shout-outs (<i>p</i> < 0.001). Individuals (i.e., patients, caregivers, and advocates tweeting on their own behalf) and nonprofit organizations made a majority of the tweets at 41.5% and 38.6%, respectively, followed by health care professionals (8.7%), academic and/or medical centers (4.2%), and for-profit companies (3.5%). Childhood cancer communication on X is dominated by individuals doing advocacy and fundraising. X may provide important opportunities for public health messaging and science communication about childhood cancer.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2024-12-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142894417","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}
Carlos Eduardo Salazar-Mejía, Rosalaura Virginia Villarreal-González, Oscar Vidal-Gutiérrez, Carlos de la Cruz-de la Cruz, Estefanía Guadarrama-Rendón, Sofia Alejandra Alvarado-Ruiz, Andrea Sarahi Guerra-Garza, Ramiro Quiroz-Huerta, Karina Alicia Salazar-Salazar, Neri Alejandro Alvarez-Villalobos
Germ cell tumors (GCTs) are chemosensitive neoplasms with high cure rates; however, a small group of patients present tumors with refractory chemotherapy, with a dismal prognosis and few effective management options. Although immune checkpoint inhibitors (ICIs) are approved for use in chemotherapy refractory GCT, the evidence supporting this indication remains scarce. Original research studies were included on patients with GCTs refractory to chemotherapy treated with ICI up to December 2023. Comprehensive search strategies databases and MeSH keywords were used to locate eligible literature. Study characteristics, participant demographics, and oncological outcomes were recorded. A total of 13 studies (n = 106) were included, five single-patient case reports, one retrospective cohort, six-phase II randomized controlled trials (RCTs), and an abstract from the preliminary results of a phase II RCT. Most of the studies evaluated did not request biomarkers as inclusion criteria. Median overall response rate across studies was 3.4% (range, 0-57) and 0% (range, 0-6) in retrospective cohort and phase II studies. Progressive disease as the best response was present in most patients, with 75% (range, 0-82.9) in the overall population and 82% (range, 75 -83) in the retrospective cohort and phase II trials. Some of the most durable clinical responses documented in this systematic review corresponded to high tumor mutational burden (TMB-H) or high microsatellite instability (MSI-H)/dMMR tumors. Retrospective cohorts and clinical trials evaluating ICIs for the treatment of chemo-refractory GCTs documented limited activity of these drugs as a single intervention in patients not selected by biomarkers, with a tendency to better results described in those with TMB-H or MSI-H/dMMR tumors.
{"title":"Immune Checkpoint Inhibitors in Patients with Testicular Cancer: A Systematic Review.","authors":"Carlos Eduardo Salazar-Mejía, Rosalaura Virginia Villarreal-González, Oscar Vidal-Gutiérrez, Carlos de la Cruz-de la Cruz, Estefanía Guadarrama-Rendón, Sofia Alejandra Alvarado-Ruiz, Andrea Sarahi Guerra-Garza, Ramiro Quiroz-Huerta, Karina Alicia Salazar-Salazar, Neri Alejandro Alvarez-Villalobos","doi":"10.1089/jayao.2024.0056","DOIUrl":"https://doi.org/10.1089/jayao.2024.0056","url":null,"abstract":"<p><p>Germ cell tumors (GCTs) are chemosensitive neoplasms with high cure rates; however, a small group of patients present tumors with refractory chemotherapy, with a dismal prognosis and few effective management options. Although immune checkpoint inhibitors (ICIs) are approved for use in chemotherapy refractory GCT, the evidence supporting this indication remains scarce. Original research studies were included on patients with GCTs refractory to chemotherapy treated with ICI up to December 2023. Comprehensive search strategies databases and MeSH keywords were used to locate eligible literature. Study characteristics, participant demographics, and oncological outcomes were recorded. A total of 13 studies (<i>n</i> = 106) were included, five single-patient case reports, one retrospective cohort, six-phase II randomized controlled trials (RCTs), and an abstract from the preliminary results of a phase II RCT. Most of the studies evaluated did not request biomarkers as inclusion criteria. Median overall response rate across studies was 3.4% (range, 0-57) and 0% (range, 0-6) in retrospective cohort and phase II studies. Progressive disease as the best response was present in most patients, with 75% (range, 0-82.9) in the overall population and 82% (range, 75 -83) in the retrospective cohort and phase II trials. Some of the most durable clinical responses documented in this systematic review corresponded to high tumor mutational burden (TMB-H) or high microsatellite instability (MSI-H)/dMMR tumors. Retrospective cohorts and clinical trials evaluating ICIs for the treatment of chemo-refractory GCTs documented limited activity of these drugs as a single intervention in patients not selected by biomarkers, with a tendency to better results described in those with TMB-H or MSI-H/dMMR tumors.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2024-12-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142885291","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}
Peter Sciberras, Kirsten Cromie, Anna Radford, Adam Glaser, Richard G Feltbower, Nicola Hughes
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.
{"title":"Survival Outcomes Following Chemotherapy for High-Grade Central Nervous System Tumors in Adolescents and Young Adults: An Exploration of Variations According to Ethnicity and Deprivation.","authors":"Peter Sciberras, Kirsten Cromie, Anna Radford, Adam Glaser, Richard G Feltbower, Nicola Hughes","doi":"10.1089/jayao.2024.0124","DOIUrl":"https://doi.org/10.1089/jayao.2024.0124","url":null,"abstract":"<p><p><b><i>Introduction:</i></b> 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). <b><i>Methods:</i></b> 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. <b><i>Results:</i></b> 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. <b><i>Conclusion:</i></b> 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.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2024-12-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142785498","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 : 2024-12-01Epub Date: 2024-05-13DOI: 10.1089/jayao.2024.0035
Stephanie L Corey, Aya Ari, Maya Sonpatki, Julia H Drizin, Jessica R Gorman
This study aimed to evaluate how the adolescent and young adult (AYA) cancer community utilized Twitter to discuss the financial challenges of oncofertility care and to advocate for change. Tweets related to oncofertility and finances (n = 166), collected over a 12-week time period encompassing AYA Cancer Awareness Week, were thematically analyzed. Conversations highlighted how the high cost of care contributed to already high emotional and social distress. Proposed actions included providing timely information more equitably, improving access to financial support, and continued advocacy of policy changes to improve access to oncofertility care. Future research can explore the potential impact on policy change and clinical care.
本研究旨在评估青少年和年轻成人(AYA)癌症群体如何利用推特来讨论非同性生育护理所面临的财务挑战并倡导变革。在为期 12 周的 "青少年和青年癌症意识周"(AYA Cancer Awareness Week)期间,我们收集了与辅助生育和财务相关的推文(n = 166),并对其进行了主题分析。对话强调了高昂的医疗费用如何加剧了本已很高的情绪和社会压力。建议采取的行动包括更公平地提供及时信息、改善获得经济支持的途径,以及继续倡导政策变革,以改善获得非同步生育护理的途径。未来的研究可以探索政策变化和临床护理的潜在影响。
{"title":"\"Infertility Isn't a Choice!\": Conversations on Twitter about the Financial Burden of Oncofertility Care.","authors":"Stephanie L Corey, Aya Ari, Maya Sonpatki, Julia H Drizin, Jessica R Gorman","doi":"10.1089/jayao.2024.0035","DOIUrl":"10.1089/jayao.2024.0035","url":null,"abstract":"<p><p>This study aimed to evaluate how the adolescent and young adult (AYA) cancer community utilized Twitter to discuss the financial challenges of oncofertility care and to advocate for change. Tweets related to oncofertility and finances (<i>n</i> = 166), collected over a 12-week time period encompassing AYA Cancer Awareness Week, were thematically analyzed. Conversations highlighted how the high cost of care contributed to already high emotional and social distress. Proposed actions included providing timely information more equitably, improving access to financial support, and continued advocacy of policy changes to improve access to oncofertility care. Future research can explore the potential impact on policy change and clinical care.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"876-881"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140911939","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 : 2024-12-01Epub Date: 2024-07-03DOI: 10.1089/jayao.2023.0136
Patrick Smith, Benjamin Snyder, Maria McDaniel, Madeleine St Ville, Elizabeth Cull, Elizabeth J Siembida, Aniket Saha
Purpose: Despite improvements in survival, adolescent and young adult (AYA) oncology patients are at high risk for experiencing negative health-related quality of life (HRQOL) outcomes. AYA cancer programs have attempted to develop assessment tools to identify areas of need. We aimed to demonstrate the feasibility/utility of the Patient-Reported Outcome Measurement Information System®-29 (PROMIS®-29) within an AYA oncology program clinic. Methods: AYA patients were referred by oncologists to the AYA oncology program at Prisma Health. The PROMIS-29 v2.0 survey was administered to AYAs at point of care. Feasibility of distribution and completion rate of surveys were determined. PROMIS surveys were self-reported and subsequently scored using standardized methods. The domains assessed included physical function, anxiety, depression, fatigue, sleep disturbance, ability to participate in social roles/activities, pain interference, and pain intensity. Qualitative descriptions of AYA care delivery based on survey responses at the patient level and programmatic level are also presented. Results: Between May 2017 and 2019, 134 AYAs who were newly diagnosed or in treatment completed the survey. Distribution and completion rates for the PROMIS-29 were both 100%, and meaningful changes in program-level services were implemented as a result of PROMIS-29 score patterns. Within the entire cohort, T-scores for anxiety, fatigue, and physical function reached clinically relevant thresholds. Conclusion: PROMIS offers a feasible opportunity for AYA programs to measure clinically useful HRQOL outcomes in AYAs. The survey can be used to deliver real-time AYA care to recently diagnosed and in-treatment AYAs and make programmatic changes within AYA oncology programs.
目的:尽管生存率有所提高,但青少年和年轻成人(AYA)肿瘤患者仍面临着健康相关生活质量(HRQOL)负面结果的高风险。青少年和青年癌症项目已尝试开发评估工具,以确定需求领域。我们的目的是证明患者报告结果测量信息系统®-29 (PROMIS®-29)在亚青肿瘤项目诊所中的可行性/实用性。方法:亚青肿瘤患者由肿瘤专家转诊至 Prisma Health 的亚青肿瘤项目。PROMIS-29 v2.0调查表在就诊时发放给青少年。确定了调查问卷发放的可行性和完成率。PROMIS 调查由患者自我报告,随后采用标准化方法进行评分。评估的领域包括身体功能、焦虑、抑郁、疲劳、睡眠障碍、参与社会角色/活动的能力、疼痛干扰和疼痛强度。此外,还介绍了根据患者和项目层面的调查反馈对亚裔青少年护理服务的定性描述。结果:2017 年 5 月至 2019 年期间,134 名新确诊或正在接受治疗的青壮年完成了调查。PROMIS-29的发放率和完成率均为100%,并且根据PROMIS-29的得分模式对项目层面的服务进行了有意义的调整。在整个队列中,焦虑、疲劳和身体功能的 T 值达到了临床相关的临界值。结论PROMIS 为青少年项目提供了一个可行的机会,以测量对临床有用的青少年 HRQOL 结果。该调查可用于为新近确诊和正在接受治疗的亚裔提供实时的亚裔护理,并对亚裔肿瘤项目进行计划性调整。
{"title":"Feasibility and Clinical Utility of Patient-Reported Outcome Measurement Information System-29 in a Newly Established Adolescent and Young Adult Oncology Program.","authors":"Patrick Smith, Benjamin Snyder, Maria McDaniel, Madeleine St Ville, Elizabeth Cull, Elizabeth J Siembida, Aniket Saha","doi":"10.1089/jayao.2023.0136","DOIUrl":"10.1089/jayao.2023.0136","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Despite improvements in survival, adolescent and young adult (AYA) oncology patients are at high risk for experiencing negative health-related quality of life (HRQOL) outcomes. AYA cancer programs have attempted to develop assessment tools to identify areas of need. We aimed to demonstrate the feasibility/utility of the Patient-Reported Outcome Measurement Information System<sup>®</sup>-29 (PROMIS<sup>®</sup>-29) within an AYA oncology program clinic. <b><i>Methods:</i></b> AYA patients were referred by oncologists to the AYA oncology program at Prisma Health. The PROMIS-29 v2.0 survey was administered to AYAs at point of care. Feasibility of distribution and completion rate of surveys were determined. PROMIS surveys were self-reported and subsequently scored using standardized methods. The domains assessed included physical function, anxiety, depression, fatigue, sleep disturbance, ability to participate in social roles/activities, pain interference, and pain intensity. Qualitative descriptions of AYA care delivery based on survey responses at the patient level and programmatic level are also presented. <b><i>Results:</i></b> Between May 2017 and 2019, 134 AYAs who were newly diagnosed or in treatment completed the survey. Distribution and completion rates for the PROMIS-29 were both 100%, and meaningful changes in program-level services were implemented as a result of PROMIS-29 score patterns. Within the entire cohort, T-scores for anxiety, fatigue, and physical function reached clinically relevant thresholds. <b><i>Conclusion:</i></b> PROMIS offers a feasible opportunity for AYA programs to measure clinically useful HRQOL outcomes in AYAs. The survey can be used to deliver real-time AYA care to recently diagnosed and in-treatment AYAs and make programmatic changes within AYA oncology programs.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"844-851"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11698662/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141498110","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-12-01Epub Date: 2024-05-21DOI: 10.1089/jayao.2023.0158
Carolin Wilharm, Anne Pralong, Mara Weiß, Saskia Blütgen, Michael Hallek, Raymond Voltz, Steffen T Simon, Armin Tuchscherer
Purpose: We aimed to gain in-depth insights into the challenges and needs of adolescents and young adults with cancer (AYA) throughout their disease to detect increased needs for support. Methods: We conducted face-to-face interviews with 15 patients 18-39 years old at the time of diagnosis of malignancies who had completed treatment at the time of the interview. The interviews were analyzed using content analysis. Results: The unexpected diagnosis of a serious illness shocked the participants, especially since many were in a life phase of transition at that time and had little knowledge about cancer and its therapy. They reported feelings of helplessness, unfairness, and insecurity triggered by side effects, divergent information from health care professionals (HCPs), or lack of information. After the end of the therapy, many AYAs were challenged by prolonged changes in their lives since they gained strength from the hope of returning to "the life before." The primary needs were social and psychological support, connecting with peers, orientation, and guidance. Conclusion: AYAs face special challenges requiring support and guidance from HCPs that should extend beyond the end of the therapy. There is a need for exchange opportunities with other AYAs. Trial Registration Number: DRKS00030277 (German Clinical Trials Register); September 27, 2022.
{"title":"\"The Most Important Thing is That You Are Not Left Alone\"-A Qualitative Study of Challenges and Needs of Adolescents and Young Adults with Cancer.","authors":"Carolin Wilharm, Anne Pralong, Mara Weiß, Saskia Blütgen, Michael Hallek, Raymond Voltz, Steffen T Simon, Armin Tuchscherer","doi":"10.1089/jayao.2023.0158","DOIUrl":"10.1089/jayao.2023.0158","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> We aimed to gain in-depth insights into the challenges and needs of adolescents and young adults with cancer (AYA) throughout their disease to detect increased needs for support. <b><i>Methods:</i></b> We conducted face-to-face interviews with 15 patients 18-39 years old at the time of diagnosis of malignancies who had completed treatment at the time of the interview. The interviews were analyzed using content analysis. <b><i>Results:</i></b> The unexpected diagnosis of a serious illness shocked the participants, especially since many were in a life phase of transition at that time and had little knowledge about cancer and its therapy. They reported feelings of helplessness, unfairness, and insecurity triggered by side effects, divergent information from health care professionals (HCPs), or lack of information. After the end of the therapy, many AYAs were challenged by prolonged changes in their lives since they gained strength from the hope of returning to \"the life before.\" The primary needs were social and psychological support, connecting with peers, orientation, and guidance. <b><i>Conclusion:</i></b> AYAs face special challenges requiring support and guidance from HCPs that should extend beyond the end of the therapy. There is a need for exchange opportunities with other AYAs. <b><i>Trial Registration Number:</i></b> DRKS00030277 (German Clinical Trials Register); September 27, 2022.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"859-866"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141070485","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: Improvements in outcomes for adolescent and young adult (AYA) oncology patients have lagged behind those of other age-specific cancer populations. Research has indicated that low availability of clinical trials, biological differences of this age-group, and several psychosocial factors including higher emotional distress impact outcomes. To improve care and survival rates for these patients, hospitals have implemented AYA oncology programs. The current study evaluated documentation of care in an AYA program housed in an academic medical center based on three areas emphasized in the National Comprehensive Cancer Network's Clinical Practice Guidelines in Oncology for AYAs: clinical trial enrollment, fertility, and psychosocial care. Methods: Retrospective chart reviews were conducted for 45 patients treated before the start of the AYA oncology program and 45 patients treated after program initiation. Patients aged 15-39 years with a diagnosis of a malignant tumor were included. Variables evaluated included documentation of clinical trial enrollment, fertility preservation and sexual health considerations, and behavioral health referrals. Results: Documentation of most clinical trial and fertility variables did not significantly improve from pre- to post-program, although a higher number of patients had these variables documented post-program. Behavioral health referrals increased significantly from 52.8% pre-program to 95.4% post-program. Conclusion: Access to behavioral health care improved the most following implementation of our AYA program, which is likely because of the integration of a dedicated psychologist for AYAs when the program began. The practice of guideline-based care for this population can be better assessed and improved with designated behavioral health providers and more systematic documentation processes.
目的:青少年和年轻成人(AYA)肿瘤患者的治疗效果一直落后于其他特定年龄段的癌症患者。研究表明,临床试验机会少、这一年龄组的生理差异以及包括较高的情绪困扰在内的一些社会心理因素都会影响治疗效果。为了改善对这些患者的护理并提高其存活率,医院实施了青少年肿瘤项目。本研究根据美国国立综合癌症网络(National Comprehensive Cancer Network)的《青少年肿瘤学临床实践指南》(Clinical Practice Guidelines in Oncology for AYAs)中强调的三个方面:临床试验注册、生育和社会心理护理,对一家学术医疗中心的青少年肿瘤项目的护理记录进行了评估。方法:对 45 名在青少年肿瘤项目启动前接受治疗的患者和 45 名在项目启动后接受治疗的患者进行了病历回顾。患者年龄在 15-39 岁之间,诊断为恶性肿瘤。评估的变量包括临床试验注册记录、生育力保护和性健康考虑以及行为健康转诊。结果大多数临床试验和生育变量的记录从计划前到计划后没有明显改善,尽管计划后记录这些变量的患者人数有所增加。行为健康转诊率从计划前的 52.8% 显著增加到计划后的 95.4%。结论:在我们的亚青计划实施后,获得行为健康护理的机会得到了最大程度的改善,这很可能是因为在计划开始时就为亚青纳入了一名专门的心理学家。通过指定的行为健康服务提供者和更系统的记录流程,可以更好地评估和改进针对该人群的基于指南的护理实践。
{"title":"Communicating Adolescent and Young Adult Oncology Treatment Guidelines in Practice: The Importance of Documentation for Ensuring Positive Impacts on Oncology Care.","authors":"Jaya Mallela, Lila Pereira, Emily Simon, Shreya Makkapati, Shannon Forty, Samantha Bruno, Tara Giblin, Jeremy Rosenblum","doi":"10.1089/jayao.2023.0188","DOIUrl":"10.1089/jayao.2023.0188","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Improvements in outcomes for adolescent and young adult (AYA) oncology patients have lagged behind those of other age-specific cancer populations. Research has indicated that low availability of clinical trials, biological differences of this age-group, and several psychosocial factors including higher emotional distress impact outcomes. To improve care and survival rates for these patients, hospitals have implemented AYA oncology programs. The current study evaluated documentation of care in an AYA program housed in an academic medical center based on three areas emphasized in the National Comprehensive Cancer Network's Clinical Practice Guidelines in Oncology for AYAs: clinical trial enrollment, fertility, and psychosocial care. <b><i>Methods:</i></b> Retrospective chart reviews were conducted for 45 patients treated before the start of the AYA oncology program and 45 patients treated after program initiation. Patients aged 15-39 years with a diagnosis of a malignant tumor were included. Variables evaluated included documentation of clinical trial enrollment, fertility preservation and sexual health considerations, and behavioral health referrals. <b><i>Results:</i></b> Documentation of most clinical trial and fertility variables did not significantly improve from pre- to post-program, although a higher number of patients had these variables documented post-program. Behavioral health referrals increased significantly from 52.8% pre-program to 95.4% post-program. <b><i>Conclusion:</i></b> Access to behavioral health care improved the most following implementation of our AYA program, which is likely because of the integration of a dedicated psychologist for AYAs when the program began. The practice of guideline-based care for this population can be better assessed and improved with designated behavioral health providers and more systematic documentation processes.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"852-858"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141498109","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 : 2024-12-01Epub Date: 2024-07-12DOI: 10.1089/jayao.2024.0057
Marcel Steinmann, Anita Rietschin, Flavia Pagano, Tanya Karrer, Attila Kollár, Susanna Weidlinger, Michael von Wolff
Increasing awareness of gonadotoxicity in cancer treatments and infertility risk is essential for counseling young cancer patients. While fertility preservation options are available in many countries, limited data on gonadotoxicity hinder recommendations, especially for soft tissue cancers. This review, part of the FertiTOX project (www.fertitox.com), organized by FertiPROTEKT (www.fertiprotekt.com), aims to address this knowledge gap to improve fertility preservation guidance. We performed a systematic literature search on gonadotoxicity in soft tissue sarcoma (STS) cancer treatments. Only patients without metastases or recurrent disease were considered. "Suspected infertility" was defined based on low ovarian reserve parameters, low inhibin B levels, high gonadotropin concentration, gonadal dysfunction, amenorrhea, oligomenorrhea, azoospermia, or oligozoospermia due to limited infertility data. The study quality was assessed using the Newcastle-Ottawa Scale. The search yielded 3309 abstracts, with 138 undergoing full-text analysis. Eight studies on STS were included. Suspected infertility was observed in 20 of 28 females (71.4%, range 0-100%) and 38 of 63 males (60.3%, range 34.8-100%) with STS. Six of the eight studies received high-quality scores on the NOS, while two received a fair score. Our data suggest a high risk of infertility from chemotherapy in pre- and postpubertal STS survivors. This underscores the importance of considering fertility preservation measures when counseling these patients.
{"title":"Systematic Review of the Gonadotoxicity and Risk of Infertility of Soft Tissue Sarcoma Chemotherapies in Pre- and Postpubertal Females and Males.","authors":"Marcel Steinmann, Anita Rietschin, Flavia Pagano, Tanya Karrer, Attila Kollár, Susanna Weidlinger, Michael von Wolff","doi":"10.1089/jayao.2024.0057","DOIUrl":"10.1089/jayao.2024.0057","url":null,"abstract":"<p><p>Increasing awareness of gonadotoxicity in cancer treatments and infertility risk is essential for counseling young cancer patients. While fertility preservation options are available in many countries, limited data on gonadotoxicity hinder recommendations, especially for soft tissue cancers. This review, part of the FertiTOX project (www.fertitox.com), organized by FertiPROTEKT (www.fertiprotekt.com), aims to address this knowledge gap to improve fertility preservation guidance. We performed a systematic literature search on gonadotoxicity in soft tissue sarcoma (STS) cancer treatments. Only patients without metastases or recurrent disease were considered. \"Suspected infertility\" was defined based on low ovarian reserve parameters, low inhibin B levels, high gonadotropin concentration, gonadal dysfunction, amenorrhea, oligomenorrhea, azoospermia, or oligozoospermia due to limited infertility data. The study quality was assessed using the Newcastle-Ottawa Scale. The search yielded 3309 abstracts, with 138 undergoing full-text analysis. Eight studies on STS were included. Suspected infertility was observed in 20 of 28 females (71.4%, range 0-100%) and 38 of 63 males (60.3%, range 34.8-100%) with STS. Six of the eight studies received high-quality scores on the NOS, while two received a fair score. Our data suggest a high risk of infertility from chemotherapy in pre- and postpubertal STS survivors. This underscores the importance of considering fertility preservation measures when counseling these patients.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"803-812"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141599827","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}