Andrew G Pritchard, Melanie Altas, Anna V Tinker, Iwa Kong, Karen Goddard, Peter Lim, Sarah N Hamilton
Purpose: Survivors of adolescent and young adult (AYA) cervical cancer who undergo radiation therapy are at risk of significant long-term health sequelae. We seek to evaluate long-term toxicities and their impacts on survivors. Methods: Patients treated for cervical cancer with radiation therapy between ages 18 and 39 in the years 2000-2010 in British Columbia were eligible. One hundred eligible patients were identified and mailed a package containing a questionnaire devised by a multidisciplinary team and validated patient-reported quality of life surveys for patients with cervical cancer, the European Organization for Research and Treatment of Cancer (EORTC) QLQ-30 and CX-24. Results: A total of 22 responses were received. The average time since treatment was 17.0 years (range 12-22). Fertility preservation prior to treatment was discussed with 41% of respondents and offered to 36%. A single respondent had a child after treatment through adoption. The mean EORTC Quality of Life score was rated as 63.9. Mean functional status scores include 84.4, 83.3, 67.1, 70.6, and 77 for physical, role, emotional, cognitive, and social functioning, respectively. Elevated symptom scores include sexual/vaginal functioning (53.5), sexual worry (55.6), diarrhea (38.1), body image concerns (41.7), peripheral neuropathy (39.7), and menopausal symptoms (38.1). Many patients (32%) indicated sexual and vaginal health symptoms impacting quality of life. Other common symptoms include permanent bowel changes (27%), bladder changes (27%), mood disorders (27%), and lymphedema (18%). Multiple respondents (18%) commented on regrets for not pursuing fertility preservation. Conclusions: Long-term survivors of AYA cervix cancer have significant concerns, mood disorders, premature menopausal symptoms, and fertility issues. Respondents indicated a desire for improved fertility counseling.
{"title":"Long-Term Toxicities of Adolescent and Young Adults Who Underwent Radiation Therapy for Cervix Cancer: A Cross-Sectional Analysis.","authors":"Andrew G Pritchard, Melanie Altas, Anna V Tinker, Iwa Kong, Karen Goddard, Peter Lim, Sarah N Hamilton","doi":"10.1089/jayao.2024.0140","DOIUrl":"https://doi.org/10.1089/jayao.2024.0140","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Survivors of adolescent and young adult (AYA) cervical cancer who undergo radiation therapy are at risk of significant long-term health sequelae. We seek to evaluate long-term toxicities and their impacts on survivors. <b><i>Methods:</i></b> Patients treated for cervical cancer with radiation therapy between ages 18 and 39 in the years 2000-2010 in British Columbia were eligible. One hundred eligible patients were identified and mailed a package containing a questionnaire devised by a multidisciplinary team and validated patient-reported quality of life surveys for patients with cervical cancer, the European Organization for Research and Treatment of Cancer (EORTC) QLQ-30 and CX-24. <b><i>Results:</i></b> A total of 22 responses were received. The average time since treatment was 17.0 years (range 12-22). Fertility preservation prior to treatment was discussed with 41% of respondents and offered to 36%. A single respondent had a child after treatment through adoption. The mean EORTC Quality of Life score was rated as 63.9. Mean functional status scores include 84.4, 83.3, 67.1, 70.6, and 77 for physical, role, emotional, cognitive, and social functioning, respectively. Elevated symptom scores include sexual/vaginal functioning (53.5), sexual worry (55.6), diarrhea (38.1), body image concerns (41.7), peripheral neuropathy (39.7), and menopausal symptoms (38.1). Many patients (32%) indicated sexual and vaginal health symptoms impacting quality of life. Other common symptoms include permanent bowel changes (27%), bladder changes (27%), mood disorders (27%), and lymphedema (18%). Multiple respondents (18%) commented on regrets for not pursuing fertility preservation. <b><i>Conclusions:</i></b> Long-term survivors of AYA cervix cancer have significant concerns, mood disorders, premature menopausal symptoms, and fertility issues. Respondents indicated a desire for improved fertility counseling.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143472505","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}
Alejandra Perez Ramirez, Glynnis A McDonnell, Kimberly Buff, Jessica Pierce, Karen Wohlheiter, Stephanie Guarino, Anne E Kazak, Melissa A Alderfer
Purpose: The experience of cancer during adolescence is particularly challenging given developmental factors during this life stage. Therefore, the transition off cancer care and back to adolescent pursuits requires a developmentally sensitive approach. This study applied the Adolescent Well-Being Framework to qualitative data collected from adolescent and young adult (AYA) cancer survivors and their caregivers to better understand their experiences and needs and to develop recommendations for developmentally appropriate transition care for adolescents. Methods: Researchers partnered with a key informant community advisory board to develop study procedures and recruited participants in partnership with a national nonprofit organization serving caregivers of children with cancer. AYA cancer survivors (N = 30; aged 12-20 years; 53% female) and caregivers (N = 43; 100% female) responded to open-ended questions through an online crowdsourcing platform. Directed content analysis was used to distill themes relevant to fostering adolescent well-being during the transition off cancer treatment. Results: Eight distinct themes mapped onto the five domains of the Adolescent Well-Being Framework and highlight the need to attend to various aspects of adolescent well-being during the transition off cancer treatment, including physical recovery and mental health, connectedness to others, reentry into school and society, developing agency and resilience, and planning for a productive future. Findings informed specific recommendations to improve transition care for adolescents. Conclusion: Attention to the developmental needs and well-being of adolescents, as they end cancer treatment, may ease their transition away from their treatment team and improve engagement in post-cancer care while fostering a developmentally appropriate focus on health, connection, achievement, and resilience.
{"title":"Attending to Adolescents' Well-Being During Their Transition off Cancer Treatment: Perspectives from a Nationwide Crowdsourcing Study.","authors":"Alejandra Perez Ramirez, Glynnis A McDonnell, Kimberly Buff, Jessica Pierce, Karen Wohlheiter, Stephanie Guarino, Anne E Kazak, Melissa A Alderfer","doi":"10.1089/jayao.2024.0101","DOIUrl":"https://doi.org/10.1089/jayao.2024.0101","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> The experience of cancer during adolescence is particularly challenging given developmental factors during this life stage. Therefore, the transition off cancer care and back to adolescent pursuits requires a developmentally sensitive approach. This study applied the Adolescent Well-Being Framework to qualitative data collected from adolescent and young adult (AYA) cancer survivors and their caregivers to better understand their experiences and needs and to develop recommendations for developmentally appropriate transition care for adolescents. <b><i>Methods:</i></b> Researchers partnered with a key informant community advisory board to develop study procedures and recruited participants in partnership with a national nonprofit organization serving caregivers of children with cancer. AYA cancer survivors (<i>N</i> = 30; aged 12-20 years; 53% female) and caregivers (<i>N</i> = 43; 100% female) responded to open-ended questions through an online crowdsourcing platform. Directed content analysis was used to distill themes relevant to fostering adolescent well-being during the transition off cancer treatment. <b><i>Results:</i></b> Eight distinct themes mapped onto the five domains of the Adolescent Well-Being Framework and highlight the need to attend to various aspects of adolescent well-being during the transition off cancer treatment, including physical recovery and mental health, connectedness to others, reentry into school and society, developing agency and resilience, and planning for a productive future. Findings informed specific recommendations to improve transition care for adolescents. <b><i>Conclusion:</i></b> Attention to the developmental needs and well-being of adolescents, as they end cancer treatment, may ease their transition away from their treatment team and improve engagement in post-cancer care while fostering a developmentally appropriate focus on health, connection, achievement, and resilience.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-02-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143457615","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}
Mohammad Arfat Ganiyani, Mounika Addula, Rajiv Doddamani, Adithya Chennamadhavuni, Manas Pustake, Atulya Aman Khosla, Rohan Garje
Background: Cancer incidence (CI) and mortality vary significantly among countries and are impacted by numerous factors including the country's income and human development index (HDI). Cancer mortality (CM) in the adolescent and young adult (AYA) population, the age group of 15 - 39 years, has seen minimal improvement over the past few decades. Our study aims to identify disparities in this group and analyze the influence of income and HDI on these outcomes. Methods: We utilized the GLOBOCAN database estimates of incidence and mortality for year 2022 in 185 countries or territories for 36 cancer types to analyze the trends in crude rate of CI and crude rate of CM. Globally, in 2022, an estimated 1.32 million new cases of cancer and 379,273 deaths were reported among individuals aged 15 - 39 years. The CM-to-CI ratios for countries with very high, high, medium, and low HDI were 16.6, 1:4.4, 1: 2.2, and 1:1.9, respectively. Similarly, based on the income level of countries, the CM-to-CI ratios were observed to be 1:8.6 for high-income, 1:4.8 for upper-middle-income, 1:2.3 for lower-middle-income, and 1:1.7 for low-income nations. Conclusion: Countries with a higher HDI and income levels experienced a notably higher incidence of cancer. However, the mortality rates were inversely related to the income and HDI. Mortality-to-incidence (CM:CI) ratios were alarmingly higher in countries with lower income and lower HDI. Introducing age-specific reforms and programs for the understudied AYA population in low to middle-income countries can have a significant impact on reducing CM globally.
{"title":"Global Cancer Burden in Adolescents and Young Adults Based on Human Development Index and Income Status.","authors":"Mohammad Arfat Ganiyani, Mounika Addula, Rajiv Doddamani, Adithya Chennamadhavuni, Manas Pustake, Atulya Aman Khosla, Rohan Garje","doi":"10.1089/jayao.2024.0086","DOIUrl":"https://doi.org/10.1089/jayao.2024.0086","url":null,"abstract":"<p><p><b><i>Background:</i></b> Cancer incidence (CI) and mortality vary significantly among countries and are impacted by numerous factors including the country's income and human development index (HDI). Cancer mortality (CM) in the adolescent and young adult (AYA) population, the age group of 15 - 39 years, has seen minimal improvement over the past few decades. Our study aims to identify disparities in this group and analyze the influence of income and HDI on these outcomes. <b><i>Methods:</i></b> We utilized the GLOBOCAN database estimates of incidence and mortality for year 2022 in 185 countries or territories for 36 cancer types to analyze the trends in crude rate of CI and crude rate of CM. Globally, in 2022, an estimated 1.32 million new cases of cancer and 379,273 deaths were reported among individuals aged 15 - 39 years. The CM-to-CI ratios for countries with very high, high, medium, and low HDI were 16.6, 1:4.4, 1: 2.2, and 1:1.9, respectively. Similarly, based on the income level of countries, the CM-to-CI ratios were observed to be 1:8.6 for high-income, 1:4.8 for upper-middle-income, 1:2.3 for lower-middle-income, and 1:1.7 for low-income nations. <b><i>Conclusion:</i></b> Countries with a higher HDI and income levels experienced a notably higher incidence of cancer. However, the mortality rates were inversely related to the income and HDI. Mortality-to-incidence (CM:CI) ratios were alarmingly higher in countries with lower income and lower HDI. Introducing age-specific reforms and programs for the understudied AYA population in low to middle-income countries can have a significant impact on reducing CM globally.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-02-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143440980","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}
Lindsay F Schwartz, Emma I Brett, Andrea C King, Tara O Henderson
Adolescent and young adult (AYA) cancer survivors face increased risks of long-term health complications, compounded by engagement in risky health behaviors such as smoking or vaping nicotine or cannabis products (e.g., inhaled substance use). This scoping review explores the existing literature on inhaled substance use among AYA cancer survivors to better understand the prevalence, methods, and contributing factors driving these behaviors. While combustible cigarette smoking is decreasing, vaping remains prevalent, and both are associated with inhaled cannabis co-use. Mental health challenges experienced by AYA survivors, such as depression and anxiety, may drive increased substance use as a maladaptive coping mechanism. Despite the well-documented risks of continued substance use post-cancer diagnosis, evidence for substance use interventions tailored specifically to this population is limited. Our review identifies significant knowledge gaps, including the need for targeted research on substance use patterns, effective cessation interventions, and health care provider engagement. Further research is essential to develop evidence-based interventions to reduce inhaled substance use in AYA cancer survivors, improving their long-term health outcomes.
{"title":"Nicotine and Cannabis Use in Adolescent and Young Adult Cancer Survivors: A Scoping Review.","authors":"Lindsay F Schwartz, Emma I Brett, Andrea C King, Tara O Henderson","doi":"10.1089/jayao.2024.0143","DOIUrl":"10.1089/jayao.2024.0143","url":null,"abstract":"<p><p>Adolescent and young adult (AYA) cancer survivors face increased risks of long-term health complications, compounded by engagement in risky health behaviors such as smoking or vaping nicotine or cannabis products (e.g., inhaled substance use). This scoping review explores the existing literature on inhaled substance use among AYA cancer survivors to better understand the prevalence, methods, and contributing factors driving these behaviors. While combustible cigarette smoking is decreasing, vaping remains prevalent, and both are associated with inhaled cannabis co-use. Mental health challenges experienced by AYA survivors, such as depression and anxiety, may drive increased substance use as a maladaptive coping mechanism. Despite the well-documented risks of continued substance use post-cancer diagnosis, evidence for substance use interventions tailored specifically to this population is limited. Our review identifies significant knowledge gaps, including the need for targeted research on substance use patterns, effective cessation interventions, and health care provider engagement. Further research is essential to develop evidence-based interventions to reduce inhaled substance use in AYA cancer survivors, improving their long-term health outcomes.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-02-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143391036","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}
Katie N Rogers, Heydon K Kaddas, Joemy M Ramsay, Austin R Waters, Perla L Vaca Lopez, Karely van Thiel Berghuijs, Lauri Linder, Mark A Lewis, Echo L Warner, David Gill, Anne C Kirchhoff
We investigated insurance coverage among adolescents and young adults (AYA) with cancer before and during the COVID-19 pandemic. AYAs diagnosed with cancer 15-39 years of age were identified using Utah Cancer Registry records and linked with University of Utah electronic health records. Poisson models calculated incidence rate ratios (IRRs) of health insurance coverage during pre-pandemic (11/4/2017-3/5/2020; n = 2,140) and pandemic (3/6/2020-7/6/2022; n = 1,894) periods. Prior to the pandemic, insurance gaps were higher (pre-pandemic = 16.40%, pandemic = 13.73%; IRR = 0.84, 95%CI = 0.71-0.98); more AYAs had continuous public insurance during the pandemic (pre-pandemic = 8.60%, pandemic = 10.98%; IRR = 1.28, 95%CI = 1.05-1.56). Research is needed on the durability of pandemic relief programs on insurance coverage among AYA cancer survivors.
{"title":"Health Insurance Coverage Among Adolescent and Young Adult Cancer Survivors Receiving Health Care before and During the COVID-19 Pandemic.","authors":"Katie N Rogers, Heydon K Kaddas, Joemy M Ramsay, Austin R Waters, Perla L Vaca Lopez, Karely van Thiel Berghuijs, Lauri Linder, Mark A Lewis, Echo L Warner, David Gill, Anne C Kirchhoff","doi":"10.1089/jayao.2024.0115","DOIUrl":"https://doi.org/10.1089/jayao.2024.0115","url":null,"abstract":"<p><p>We investigated insurance coverage among adolescents and young adults (AYA) with cancer before and during the COVID-19 pandemic. AYAs diagnosed with cancer 15-39 years of age were identified using Utah Cancer Registry records and linked with University of Utah electronic health records. Poisson models calculated incidence rate ratios (IRRs) of health insurance coverage during pre-pandemic (11/4/2017-3/5/2020; <i>n</i> = 2,140) and pandemic (3/6/2020-7/6/2022; <i>n</i> = 1,894) periods. Prior to the pandemic, insurance gaps were higher (pre-pandemic = 16.40%, pandemic = 13.73%; IRR = 0.84, 95%CI = 0.71-0.98); more AYAs had continuous public insurance during the pandemic (pre-pandemic = 8.60%, pandemic = 10.98%; IRR = 1.28, 95%CI = 1.05-1.56). Research is needed on the durability of pandemic relief programs on insurance coverage among AYA cancer survivors.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-02-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143382357","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}
Karely M van Thiel Berghuijs, Nicole Ray, Perla L Vaca Lopez, Austin R Waters, Tomoko Tsukamoto, Heydon K Kaddas, Echo L Warner, Douglas Fair, Mark Lewis, Giselle K Perez, Elyse R Park, Anne C Kirchhoff
Purpose: Cancer organizations recommend cost-of-care (CoC) information be provided to patients with cancer by their care teams. Little is known about the CoC conversation experiences and preferences of adolescents and young adults (AYAs) with cancer. Methods: Eligible participants were 18-39 years old, diagnosed with cancer, and insured. Recruitment occurred at two cancer centers in Utah from October 2019 to March 2020. Data were collected via survey and semistructured telephone interviews, which were recorded and transcribed. Interview questions pertained to willingness, perceived usefulness, and past experiences with CoC conversations with their cancer care team. Interviews were analyzed by applying two rounds of thematic content analysis. Summary statistics were calculated for demographics, health insurance literacy, and financial toxicity. Results: Among 24 participants, half were aged 18-25 and half were aged 26-39 at interview and survey, with many currently receiving treatment (62.5%). Four qualitative themes emerged concerning CoC conversations (1) past experiences, (2) willingness, (3) usefulness, and (4) preferred provider. In interviews, most AYAs shared interest in discussing CoC, but previous CoC conversations were infrequent. Most AYAs who had previous CoC conversation experiences brought up the topic themselves. Interview data revealed that preferred individuals to lead CoC conversations were often social workers (25.0%), nurses (20.8%), or oncologists (20.8%), while others wanted any provider knowledgeable in financial matters (20.8%). Conclusions: AYA patients are willing to have CoC conversations; however, they infrequently occur. Future work may include interventions that guide clinicians in initiating in-depth CoC discussions with AYAs.
{"title":"<i>\"I've never personally discussed the cost of anything</i>:<i>\"</i> Adolescent and Young Adult Patients with Cancer Experiences and Preferences for Cost-of-Care Conversations.","authors":"Karely M van Thiel Berghuijs, Nicole Ray, Perla L Vaca Lopez, Austin R Waters, Tomoko Tsukamoto, Heydon K Kaddas, Echo L Warner, Douglas Fair, Mark Lewis, Giselle K Perez, Elyse R Park, Anne C Kirchhoff","doi":"10.1089/jayao.2024.0102","DOIUrl":"https://doi.org/10.1089/jayao.2024.0102","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Cancer organizations recommend cost-of-care (CoC) information be provided to patients with cancer by their care teams. Little is known about the CoC conversation experiences and preferences of adolescents and young adults (AYAs) with cancer. <b><i>Methods:</i></b> Eligible participants were 18-39 years old, diagnosed with cancer, and insured. Recruitment occurred at two cancer centers in Utah from October 2019 to March 2020. Data were collected via survey and semistructured telephone interviews, which were recorded and transcribed. Interview questions pertained to willingness, perceived usefulness, and past experiences with CoC conversations with their cancer care team. Interviews were analyzed by applying two rounds of thematic content analysis. Summary statistics were calculated for demographics, health insurance literacy, and financial toxicity. <b><i>Results:</i></b> Among 24 participants, half were aged 18-25 and half were aged 26-39 at interview and survey, with many currently receiving treatment (62.5%). Four qualitative themes emerged concerning CoC conversations (1) past experiences, (2) willingness, (3) usefulness, and (4) preferred provider. In interviews, most AYAs shared interest in discussing CoC, but previous CoC conversations were infrequent. Most AYAs who had previous CoC conversation experiences brought up the topic themselves. Interview data revealed that preferred individuals to lead CoC conversations were often social workers (25.0%), nurses (20.8%), or oncologists (20.8%), while others wanted any provider knowledgeable in financial matters (20.8%). <b><i>Conclusions:</i></b> AYA patients are willing to have CoC conversations; however, they infrequently occur. Future work may include interventions that guide clinicians in initiating in-depth CoC discussions with AYAs.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-02-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143255500","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: This study aims to explore the impact of cancer on romantic relationships and marriage from the perspective of partners of adolescent and young adult (AYA) cancer survivors. Methods: Semistructured interviews were conducted with 10 partners, of any gender and cancer type, who entered into a relationship or decided to marry after the AYA's cancer diagnosis. Results: Three key themes emerged regarding the impact of cancer on romantic relationships and marriage: no change or impact, positive impact, and anxiety. Negative impacts were rarely reported, although some participants suggested that, had the illness been more severe or active at the time they met, they might have hesitated to commit or marry. Positive impact included respect for cancer survivors and a sense of fulfillment from having overcome the disease together. Conclusion: Partners of AYAs generally accepted the disclosure of the survivor's cancer history without distress and demonstrated supportive attitudes. There were few negative effects on relationships or marriage, and no differences in impact were found based on cancer type. Cultural differences were noted in attitudes toward having children, in contrast to findings from studies conducted in Western countries.
{"title":"Partners' Perspectives on the Impact of Cancer on Romantic Relationships and Marriage in Adolescent and Young Adult Cancer Survivors.","authors":"Kanako Yoshida, Yutaka Matsui, Satoko Ando","doi":"10.1089/jayao.2024.0142","DOIUrl":"https://doi.org/10.1089/jayao.2024.0142","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> This study aims to explore the impact of cancer on romantic relationships and marriage from the perspective of partners of adolescent and young adult (AYA) cancer survivors. <b><i>Methods:</i></b> Semistructured interviews were conducted with 10 partners, of any gender and cancer type, who entered into a relationship or decided to marry after the AYA's cancer diagnosis. <b><i>Results:</i></b> Three key themes emerged regarding the impact of cancer on romantic relationships and marriage: no change or impact, positive impact, and anxiety. Negative impacts were rarely reported, although some participants suggested that, had the illness been more severe or active at the time they met, they might have hesitated to commit or marry. Positive impact included respect for cancer survivors and a sense of fulfillment from having overcome the disease together. <b><i>Conclusion:</i></b> Partners of AYAs generally accepted the disclosure of the survivor's cancer history without distress and demonstrated supportive attitudes. There were few negative effects on relationships or marriage, and no differences in impact were found based on cancer type. Cultural differences were noted in attitudes toward having children, in contrast to findings from studies conducted in Western countries.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-01-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143059052","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}
Andrew Murnane, Jakub Mesinovic, Nicole Kiss, Jeremy Lewin, Annie Curtis, Steve F Fraser
Purpose: To investigate cardiorespiratory fitness (CRF), body composition, health behaviors, and health-related quality of life (HRQoL) in adolescent and young adult cancer survivors (AYA-CS) compared with age-matched counterparts without a cancer diagnosis. Methods: This cross-sectional study recruited participants aged 15-25 years at the time of their cancer diagnosis and ≥ 5 years post-treatment. Participants completed cardiopulmonary exercise testing, dual-energy X-ray absorptiometry, food diaries, physical activity (PA), fatigue, and HRQoL questionnaires. Results: We recruited 22 participants aged 27.9 (standard deviation [SD] 3.3) years (54.5% female) and 7.2 (SD 2.2) years post-treatment. AYA-CS had lower CRF compared with age-matched norms (female 27.1 vs. 39.1 mL/kg/min, p ≤ 0.0001; male: 39.7 vs. 45.6 mL/kg/min, p = 0.04). Bone mineral density Z-scores were all within normal ranges; however, male AYA-CS had higher body fat percentage (male: 27.1% vs. 21.2%, p = 0.01) and a trend toward higher body fat percentage in female AYA-CS (32.2% vs. 29.8%, p = 03). AYA-CS had lower HRQoL, with no difference observed with fatigue. A higher proportion of AYA-CS met recommendations for weekly PA (36.4% vs. 27.3%, p = 0.34) and daily servings of fruit and vegetables (13.6% vs. 3.9%, p = 0.02) compared with normative data, demonstrating better health behaviors. A higher proportion of AYA-CS reported one or more chronic diseases compared with Australian normative data (63.7% vs. 41.5%, p = 0.04). Conclusions: AYA-CS exhibit significantly lower CRF and unfavorable body composition to age-matched counterparts. These health outcomes may adversely impact everyday functional performance and increase the risk of multimorbidity development. Interventions are needed to address these issues to improve health outcomes in AYA-CS.
{"title":"Fitness, Body Composition, and Health Behaviors in Long-Term Survivors of Adolescent and Young Adult Cancers.","authors":"Andrew Murnane, Jakub Mesinovic, Nicole Kiss, Jeremy Lewin, Annie Curtis, Steve F Fraser","doi":"10.1089/jayao.2024.0135","DOIUrl":"https://doi.org/10.1089/jayao.2024.0135","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> To investigate cardiorespiratory fitness (CRF), body composition, health behaviors, and health-related quality of life (HRQoL) in adolescent and young adult cancer survivors (AYA-CS) compared with age-matched counterparts without a cancer diagnosis. <b><i>Methods:</i></b> This cross-sectional study recruited participants aged 15-25 years at the time of their cancer diagnosis and ≥ 5 years post-treatment. Participants completed cardiopulmonary exercise testing, dual-energy X-ray absorptiometry, food diaries, physical activity (PA), fatigue, and HRQoL questionnaires. <b><i>Results:</i></b> We recruited 22 participants aged 27.9 (standard deviation [SD] 3.3) years (54.5% female) and 7.2 (SD 2.2) years post-treatment. AYA-CS had lower CRF compared with age-matched norms (female 27.1 vs. 39.1 mL/kg/min, <i>p</i> ≤ 0.0001; male: 39.7 vs. 45.6 mL/kg/min, <i>p</i> = 0.04). Bone mineral density <i>Z</i>-scores were all within normal ranges; however, male AYA-CS had higher body fat percentage (male: 27.1% vs. 21.2%, <i>p</i> = 0.01) and a trend toward higher body fat percentage in female AYA-CS (32.2% vs. 29.8%, <i>p</i> = 03). AYA-CS had lower HRQoL, with no difference observed with fatigue. A higher proportion of AYA-CS met recommendations for weekly PA (36.4% vs. 27.3%, <i>p</i> = 0.34) and daily servings of fruit and vegetables (13.6% vs. 3.9%, <i>p</i> = 0.02) compared with normative data, demonstrating better health behaviors. A higher proportion of AYA-CS reported one or more chronic diseases compared with Australian normative data (63.7% vs. 41.5%, <i>p</i> = 0.04). <b><i>Conclusions:</i></b> AYA-CS exhibit significantly lower CRF and unfavorable body composition to age-matched counterparts. These health outcomes may adversely impact everyday functional performance and increase the risk of multimorbidity development. Interventions are needed to address these issues to improve health outcomes in AYA-CS.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2025-01-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143052658","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}
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}