Daniel Elledge, Antonia Leavitt, Alice Hoeft, Karen Albritton
Purpose: The AYA Psycho-Oncology Screening Tool was developed to assess adolescent and young adult (AYA) patients' distress during cancer treatment. The on-treatment distress screening tool has been validated with AYAs and includes a 10-point distress thermometer (DT) and a 53-item problem checklist (PCL). However, previous studies have not solely examined AYA cancer distress within a children's hospital. Therefore, our project aimed to explore AYA distress in a pediatric cancer setting. Methods: AYA-aged participants (aged ≥15) were given the distress screener initially within 1 month of diagnosis and every 2, 4, or 6 months, depending on their previous distress score. Chi-square, independent t-tests, and binary logistic regressions were conducted for data analysis. Results: Between January 2021 and July 2022, we completed 123 screenings in 68 AYAs (age 15-30) on treatment. Average DT score was 2.96 with 30% of participants endorsing distress levels of 5 and above. There were statistically significant differences by sex as females endorsed higher levels of distress compared with males. Adolescents (<18) endorsed statistically significant higher frequency of emotional PCL items in comparison with young adults (≥18). There were no differences by race or diagnosis. Conclusions: Our team gained awareness of specific areas of concerns for AYAs, allowing for more targeted interventions for distressed participants. Certain demographic variables may put participants at risk for increased distress. As a result of the project, a protocol has been developed to follow up with participants if they report a certain distress score (5 or above) and/or endorse critical items.
{"title":"Utilization of the Adolescent and Young Adult Psycho-Oncology Screening Tool in a Pediatric Hospital Adolescent/Young Adult Program.","authors":"Daniel Elledge, Antonia Leavitt, Alice Hoeft, Karen Albritton","doi":"10.1089/jayao.2023.0170","DOIUrl":"https://doi.org/10.1089/jayao.2023.0170","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> The AYA Psycho-Oncology Screening Tool was developed to assess adolescent and young adult (AYA) patients' distress during cancer treatment. The on-treatment distress screening tool has been validated with AYAs and includes a 10-point distress thermometer (DT) and a 53-item problem checklist (PCL). However, previous studies have not solely examined AYA cancer distress within a children's hospital. Therefore, our project aimed to explore AYA distress in a pediatric cancer setting. <b><i>Methods:</i></b> AYA-aged participants (aged ≥15) were given the distress screener initially within 1 month of diagnosis and every 2, 4, or 6 months, depending on their previous distress score. Chi-square, independent <i>t</i>-tests, and binary logistic regressions were conducted for data analysis. <b><i>Results:</i></b> Between January 2021 and July 2022, we completed 123 screenings in 68 AYAs (age 15-30) on treatment. Average DT score was 2.96 with 30% of participants endorsing distress levels of 5 and above. There were statistically significant differences by sex as females endorsed higher levels of distress compared with males. Adolescents (<18) endorsed statistically significant higher frequency of emotional PCL items in comparison with young adults (≥18). There were no differences by race or diagnosis. <b><i>Conclusions:</i></b> Our team gained awareness of specific areas of concerns for AYAs, allowing for more targeted interventions for distressed participants. Certain demographic variables may put participants at risk for increased distress. As a result of the project, a protocol has been developed to follow up with participants if they report a certain distress score (5 or above) and/or endorse critical items.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2024-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141498112","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}
Annemarie D Jagielo, Alexandra M Davis, Devon Pons, Michael A Diefenbach, Jennifer S Ford, Lidia Schapira, Catherine Benedict
This study describes young adult female (YA-F) cancer survivors' uncertainty management strategies related to fertility/family building. Cross-sectional data were analyzed (n = 98). Participants reported higher rates of seeking information to reduce fertility-related uncertainty (M = 5.48, ±1.03), than avoiding information (M = 4.77, ±1.29). Controlling for relevant covariates (i.e., reproductive distress, household income, and health literacy), greater avoidance was related to higher reproductive distress (β = 0.293, p = 0.011) and lower household income (β = -0.281, p = 0.047). Evidence suggests that some survivors may avoid fertility-related information to manage uncertainty and distress, which may impact family-building success. Fertility avoidance may be an important target of intervention.
{"title":"Cancer and Fertility: Exploring Uncertainty Management Strategies of Young Adult Female Survivors.","authors":"Annemarie D Jagielo, Alexandra M Davis, Devon Pons, Michael A Diefenbach, Jennifer S Ford, Lidia Schapira, Catherine Benedict","doi":"10.1089/jayao.2024.0015","DOIUrl":"10.1089/jayao.2024.0015","url":null,"abstract":"<p><p>This study describes young adult female (YA-F) cancer survivors' uncertainty management strategies related to fertility/family building. Cross-sectional data were analyzed (<i>n</i> = 98). Participants reported higher rates of seeking information to reduce fertility-related uncertainty (M = 5.48, ±1.03), than avoiding information (M = 4.77, ±1.29). Controlling for relevant covariates (i.e., reproductive distress, household income, and health literacy), greater avoidance was related to higher reproductive distress (β = 0.293, <i>p</i> = 0.011) and lower household income (β = -0.281, <i>p</i> = 0.047). Evidence suggests that some survivors may avoid fertility-related information to manage uncertainty and distress, which may impact family-building success. Fertility avoidance may be an important target of intervention.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2024-06-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141432031","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 : 2024-06-01Epub Date: 2024-01-23DOI: 10.1089/jayao.2023.0127
Ming Li, Grant Sara, David Roder, Tracey A O'Brien
Purpose: To assess the mental health conditions, as indicated by mental health service contact in adolescents and young adults (AYAs) diagnosed with cancer in New South Wales (NSW) and associations with cancer mortality. Methods: In 3998 NSW AYAs diagnosed with cancer in 2005-2017, mental health service contacts were obtained from hospital inpatient records and specified medical and pharmaceutical insurance claims. Odds of postcancer mental health contact were assessed by precancer mental contacts using logistic regression adjusted for sociodemographic and cancer characteristics. The risk of cancer-specific mortality related to postcancer mental health contacts was estimated using competing risk regression. Results: The prevalence of mental health service contacts in the 5 years postcancer diagnosis was 27.0%, higher than the corresponding precancer prevalence of 21.4%. The most common mental health conditions were depression and anxiety. The odds of having a mental health contact postcancer diagnosis were higher in patients with a precancer mental health service contact (adjusted odds ratio 5.69, confidence intervals [95% CIs]: 4.90-6.75). The 5-year cancer-specific survival was 87.9% (95% CI: 85.8-89.8) for patients with a mental health service contact postcancer, which was lower than the 93.9% (95% CI: 93.0-94.7) for patients without this contact. The subhazard ratio (SHR) for cancer mortality in patients having mental health service contact postcancer diagnosis was 1.67 (95% CI: 1.29-2.15), adjusted for sociodemographic characteristics, cancer stage, and precancer mental health status. Conclusion: The prevalence of mental health service contact increased after a cancer diagnosis. Mental health care should be a continued priority for AYA cancer patients, particularly for high-risk groups.
{"title":"Mental Health Service Contact Following Cancer Diagnosis and Associations with Cancer Mortality: Results from a Linked Population-Based Study of Adolescents and Young Adults in New South Wales.","authors":"Ming Li, Grant Sara, David Roder, Tracey A O'Brien","doi":"10.1089/jayao.2023.0127","DOIUrl":"10.1089/jayao.2023.0127","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> To assess the mental health conditions, as indicated by mental health service contact in adolescents and young adults (AYAs) diagnosed with cancer in New South Wales (NSW) and associations with cancer mortality. <b><i>Methods:</i></b> In 3998 NSW AYAs diagnosed with cancer in 2005-2017, mental health service contacts were obtained from hospital inpatient records and specified medical and pharmaceutical insurance claims. Odds of postcancer mental health contact were assessed by precancer mental contacts using logistic regression adjusted for sociodemographic and cancer characteristics. The risk of cancer-specific mortality related to postcancer mental health contacts was estimated using competing risk regression. <b><i>Results:</i></b> The prevalence of mental health service contacts in the 5 years postcancer diagnosis was 27.0%, higher than the corresponding precancer prevalence of 21.4%. The most common mental health conditions were depression and anxiety. The odds of having a mental health contact postcancer diagnosis were higher in patients with a precancer mental health service contact (adjusted odds ratio 5.69, confidence intervals [95% CIs]: 4.90-6.75). The 5-year cancer-specific survival was 87.9% (95% CI: 85.8-89.8) for patients with a mental health service contact postcancer, which was lower than the 93.9% (95% CI: 93.0-94.7) for patients without this contact. The subhazard ratio (SHR) for cancer mortality in patients having mental health service contact postcancer diagnosis was 1.67 (95% CI: 1.29-2.15), adjusted for sociodemographic characteristics, cancer stage, and precancer mental health status. <b><i>Conclusion:</i></b> The prevalence of mental health service contact increased after a cancer diagnosis. Mental health care should be a continued priority for AYA cancer patients, particularly for high-risk groups.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"481-491"},"PeriodicalIF":1.2,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139542330","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 : 2024-06-01Epub Date: 2024-02-06DOI: 10.1089/jayao.2023.0150
Rachel Hawn, Jen Stevens, Mays Basha, Kristine Kwekkeboom
Physical activity (PA) may minimize long-term and late effects experienced by cancer survivors. However, the efficacy of PA interventions in increasing PA engagement among adolescent and young adult (AYA) cancer survivors diagnosed between 15 and 39 is not well understood. This systematic review aimed to examine the effects of moderate- to high-intensity or strength training PA interventions on PA engagement in AYA cancer survivors. Secondary aims included describing intervention components unique to efficacious interventions, identifying symptom management in PA interventions, and evaluating intervention effects on quality of life (QoL), and long-term or late effects of cancer. We searched PubMed, CINAHL, PsycINFO, SportDiscus, Cochrane Library, and Scopus databases from inception to August 2022 and identified 12 articles, including 8 randomized controlled trials and 4 quasi-experimental studies. The effect of PA interventions on PA engagement was mixed, with four studies reporting increases in PA engagement ranging from 18.4 to 113.8 min/week postintervention. There was great diversity in PA intervention components. Motivational interviewing, supervised and unsupervised PA sessions together, moderate-intensity PA only, and mindful meditation were components unique to efficacious interventions. No intervention incorporated symptom management components. Studies provided some evidence of PA interventions on potential long-term effects of cancer, with positive impact on fatigue, and some evidence of improved anxiety, sleep, and QoL. Given limited research with AYA cancer survivors, additional research is needed to identify effective intervention components, integrate symptom management strategies into PA interventions, and track effects of PA interventions on late and long-term effects of cancer in this population.
{"title":"A Systematic Review of the Characteristics and Effects of Physical Activity Interventions on Physical Activity Engagement, Long-Term and Late Effects, and Quality of Life in Adolescent and Young Adult Cancer Survivors.","authors":"Rachel Hawn, Jen Stevens, Mays Basha, Kristine Kwekkeboom","doi":"10.1089/jayao.2023.0150","DOIUrl":"10.1089/jayao.2023.0150","url":null,"abstract":"<p><p>Physical activity (PA) may minimize long-term and late effects experienced by cancer survivors. However, the efficacy of PA interventions in increasing PA engagement among adolescent and young adult (AYA) cancer survivors diagnosed between 15 and 39 is not well understood. This systematic review aimed to examine the effects of moderate- to high-intensity or strength training PA interventions on PA engagement in AYA cancer survivors. Secondary aims included describing intervention components unique to efficacious interventions, identifying symptom management in PA interventions, and evaluating intervention effects on quality of life (QoL), and long-term or late effects of cancer. We searched PubMed, CINAHL, PsycINFO, SportDiscus, Cochrane Library, and Scopus databases from inception to August 2022 and identified 12 articles, including 8 randomized controlled trials and 4 quasi-experimental studies. The effect of PA interventions on PA engagement was mixed, with four studies reporting increases in PA engagement ranging from 18.4 to 113.8 min/week postintervention. There was great diversity in PA intervention components. Motivational interviewing, supervised and unsupervised PA sessions together, moderate-intensity PA only, and mindful meditation were components unique to efficacious interventions. No intervention incorporated symptom management components. Studies provided some evidence of PA interventions on potential long-term effects of cancer, with positive impact on fatigue, and some evidence of improved anxiety, sleep, and QoL. Given limited research with AYA cancer survivors, additional research is needed to identify effective intervention components, integrate symptom management strategies into PA interventions, and track effects of PA interventions on late and long-term effects of cancer in this population.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"444-464"},"PeriodicalIF":1.2,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139697463","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 : 2024-06-01Epub Date: 2024-01-23DOI: 10.1089/jayao.2023.0130
Amy M Berkman, Clark R Andersen, Andrew P Landstrom, Michelle A T Hildebrandt, Susan C Gilchrist, Michael E Roth
Purpose: Childhood, adolescent, and young adult (CAYA) cancer survivors (age 0-39 years at diagnosis) are at increased risk of cardiovascular disease (CVD). Family history of early heart disease increases the risk of CVD in the general population; however, it is unknown whether this association is seen in CAYA cancer survivors. Methods: Self-report data from the National Health and Nutrition Examination Survey (2005-2018) were used to identify CAYA survivors (>5 years post-diagnosis). The risk of CVD based on family history status (parent or sibling with a diagnosis of heart attack or angina before age 50 years), personal sociodemographic factors, personal medical history factors, and personal behavioral risk factors was determined using logistic regression models. Results: Included were 95 CAYA survivors with CVD and 491 CAYA survivors without CVD. The odds of CVD were significantly higher in survivors with a first-degree family history of early heart disease (odds ratio [OR]: 2.06, 95% confidence interval [CI]: 1.14-3.74). A history of diabetes (OR: 2.61, 95% CI: 1.41-4.84), hypertension (OR: 1.81, 95% CI: 1.04-3.16), and any smoking (OR: 2.19, 95% CI: 1.19-4.02) was also associated with higher odds of CVD in CAYA survivors. Reporting any physical activity in the past month was associated with lower odds (OR: 0.54, 95% CI: 0.30-0.97) of CVD. Conclusions: Family history of early heart disease was associated with increased odds of CVD in CAYA cancer survivors. Obtaining complete and accurate family history information is important both at time of diagnosis and throughout follow-up.
{"title":"Cardiovascular Disease in Childhood, Adolescent, and Young Adult Cancer Survivors: The Impact of Family History of Premature Heart Disease.","authors":"Amy M Berkman, Clark R Andersen, Andrew P Landstrom, Michelle A T Hildebrandt, Susan C Gilchrist, Michael E Roth","doi":"10.1089/jayao.2023.0130","DOIUrl":"10.1089/jayao.2023.0130","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Childhood, adolescent, and young adult (CAYA) cancer survivors (age 0-39 years at diagnosis) are at increased risk of cardiovascular disease (CVD). Family history of early heart disease increases the risk of CVD in the general population; however, it is unknown whether this association is seen in CAYA cancer survivors. <b><i>Methods:</i></b> Self-report data from the National Health and Nutrition Examination Survey (2005-2018) were used to identify CAYA survivors (>5 years post-diagnosis). The risk of CVD based on family history status (parent or sibling with a diagnosis of heart attack or angina before age 50 years), personal sociodemographic factors, personal medical history factors, and personal behavioral risk factors was determined using logistic regression models. <b><i>Results:</i></b> Included were 95 CAYA survivors with CVD and 491 CAYA survivors without CVD. The odds of CVD were significantly higher in survivors with a first-degree family history of early heart disease (odds ratio [OR]: 2.06, 95% confidence interval [CI]: 1.14-3.74). A history of diabetes (OR: 2.61, 95% CI: 1.41-4.84), hypertension (OR: 1.81, 95% CI: 1.04-3.16), and any smoking (OR: 2.19, 95% CI: 1.19-4.02) was also associated with higher odds of CVD in CAYA survivors. Reporting any physical activity in the past month was associated with lower odds (OR: 0.54, 95% CI: 0.30-0.97) of CVD. <b><i>Conclusions:</i></b> Family history of early heart disease was associated with increased odds of CVD in CAYA cancer survivors. Obtaining complete and accurate family history information is important both at time of diagnosis and throughout follow-up.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"548-556"},"PeriodicalIF":1.2,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139542326","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 : 2024-06-01Epub Date: 2024-01-30DOI: 10.1089/jayao.2023.0141
Rachel M Taylor, Jeremy S Whelan, Julie A Barber, Javier Alvarez-Galvez, Richard G Feltbower, Faith Gibson, Dan P Stark, Lorna A Fern
Purpose: In England, health care policy promotes specialized age-appropriate cancer services for teenagers and young adults (TYA), for those aged 13-24 years at diagnosis. Specialist Principal Treatment Centers (PTCs) provide enhanced age-specific care for TYA, although many still receive all or some of their care in adult or children's cancer services. Our aim was to determine the patient-reported outcomes associated with TYA-PTC based care. Methods: We conducted a multicenter cohort study, recruiting 1114 TYA aged 13-24 years at diagnosis. Data collection involved a bespoke survey at 6,12,18, 24, and 36 months after diagnosis. Confounder adjusted analyses of perceived social support, illness perception, anxiety and depression, and health status, compared patients receiving NO-TYA-PTC care with those receiving ALL-TYA-PTC and SOME-TYA-PTC care. Results: Eight hundred and thirty completed the first survey. There was no difference in perceived social support, anxiety, or depression between the three categories of care. Significantly higher illness perception was observed in the ALL-TYA-PTC and SOME-TYA-PTC group compared to the NO-TYA-PTC group, (adjusted difference in mean (ADM) score on Brief Illness Perception scale 2.28 (95% confidence intervals [CI] 0.48-4.09) and 2.93 [1.27-4.59], respectively, p = 0.002). Similarly, health status was significantly better in the NO-TYA-PTC (ALL-TYA-PTC: ADM -0.011 [95%CI -0.046 to 0.024] and SOME-TYA-PTC: -0.054 [-0.086 to -0.023]; p = 0.006). Conclusion: The reason for the difference in perceived health status is unclear. TYA who accessed a TYA-PTC (all or some care) had higher perceived illness. This may reflect greater education and promotion of self-care by health care professionals in TYA units.
{"title":"The Impact of Specialist Care on Teenage and Young Adult Patient-Reported Outcomes in England: A BRIGHTLIGHT Study.","authors":"Rachel M Taylor, Jeremy S Whelan, Julie A Barber, Javier Alvarez-Galvez, Richard G Feltbower, Faith Gibson, Dan P Stark, Lorna A Fern","doi":"10.1089/jayao.2023.0141","DOIUrl":"10.1089/jayao.2023.0141","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> In England, health care policy promotes specialized age-appropriate cancer services for teenagers and young adults (TYA), for those aged 13-24 years at diagnosis. Specialist Principal Treatment Centers (PTCs) provide enhanced age-specific care for TYA, although many still receive all or some of their care in adult or children's cancer services. Our aim was to determine the patient-reported outcomes associated with TYA-PTC based care. <b><i>Methods:</i></b> We conducted a multicenter cohort study, recruiting 1114 TYA aged 13-24 years at diagnosis. Data collection involved a bespoke survey at 6,12,18, 24, and 36 months after diagnosis. Confounder adjusted analyses of perceived social support, illness perception, anxiety and depression, and health status, compared patients receiving NO-TYA-PTC care with those receiving ALL-TYA-PTC and SOME-TYA-PTC care. <b><i>Results:</i></b> Eight hundred and thirty completed the first survey. There was no difference in perceived social support, anxiety, or depression between the three categories of care. Significantly higher illness perception was observed in the ALL-TYA-PTC and SOME-TYA-PTC group compared to the NO-TYA-PTC group, (adjusted difference in mean (ADM) score on Brief Illness Perception scale 2.28 (95% confidence intervals [CI] 0.48-4.09) and 2.93 [1.27-4.59], respectively, <i>p</i> = 0.002). Similarly, health status was significantly better in the NO-TYA-PTC (ALL-TYA-PTC: ADM -0.011 [95%CI -0.046 to 0.024] and SOME-TYA-PTC: -0.054 [-0.086 to -0.023]; <i>p</i> = 0.006). <b><i>Conclusion:</i></b> The reason for the difference in perceived health status is unclear. TYA who accessed a TYA-PTC (all or some care) had higher perceived illness. This may reflect greater education and promotion of self-care by health care professionals in TYA units.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"492-501"},"PeriodicalIF":1.2,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139575855","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 : 2024-06-01Epub Date: 2024-02-23DOI: 10.1089/jayao.2023.0177
Melissa P Beauchemin, Lingyun Ji, AnnaLynn M Williams, Chandylen L Nightingale, Emily V Dressler, John M Salsman, Sheila J Santacroce, David R Freyer, Michael E Roth, Susan K Parsons
Background: Adolescents and young adults (AYAs) commonly receive cancer care in the community setting, but the availability of treatment options, resources, and support services for this population is not well known. The National Cancer Institute Community Oncology Research Program (NCORP) funds a network of practices whose mission is to increase access to cancer care and clinical trials in the community setting. We describe our interdisciplinary methodological approach to identify and characterize NCORP practices where AYAs receive cancer care. Methods: NCORP practices completed a cross-sectional Landscape Assessment to describe resources and practice characteristics. We established an interdisciplinary team of stakeholders to analyze the Landscape Assessment data relating to AYAs. Through an iterative process, we assessed NCORP practice responses to questions assessing AYA cancer care capacity, determined a threshold to define practices treating AYAs, and characterized these practices. Results: We determined that practices provide cancer care to AYAs if the following criteria were met: (1) endorsed having an AYA program (n = 20), (2) AYAs comprised ≥5% of annual cancer cases (n = 55), or (3) the practice treated ≥50 AYA cancer cases annually (n = 70). Of 271 NCORP practices, 100 (37%) met any criteria, whereas 87 (32%) did not; 84 (31%) could not be classified due to missing or unknown data. Conclusion: Using an interdisciplinary process, we define practices that treat AYAs in the community. We posit a uniform approach to examine resources and practice capacity for AYAs receiving cancer care across the United States to guide future AYA-focused cancer care delivery research development.
{"title":"Defining Practice Capacity for Cancer Care Delivery to Adolescents and Young Adults in the Community Setting: 2022 Landscape Assessment Results.","authors":"Melissa P Beauchemin, Lingyun Ji, AnnaLynn M Williams, Chandylen L Nightingale, Emily V Dressler, John M Salsman, Sheila J Santacroce, David R Freyer, Michael E Roth, Susan K Parsons","doi":"10.1089/jayao.2023.0177","DOIUrl":"10.1089/jayao.2023.0177","url":null,"abstract":"<p><p><b><i>Background:</i></b> Adolescents and young adults (AYAs) commonly receive cancer care in the community setting, but the availability of treatment options, resources, and support services for this population is not well known. The National Cancer Institute Community Oncology Research Program (NCORP) funds a network of practices whose mission is to increase access to cancer care and clinical trials in the community setting. We describe our interdisciplinary methodological approach to identify and characterize NCORP practices where AYAs receive cancer care. <b><i>Methods:</i></b> NCORP practices completed a cross-sectional <i>Landscape Assessment</i> to describe resources and practice characteristics. We established an interdisciplinary team of stakeholders to analyze the Landscape Assessment data relating to AYAs. Through an iterative process, we assessed NCORP practice responses to questions assessing AYA cancer care capacity, determined a threshold to define practices treating AYAs, and characterized these practices. <b><i>Results:</i></b> We determined that practices provide cancer care to AYAs if the following criteria were met: (1) endorsed having an AYA program (<i>n</i> = 20), (2) AYAs comprised ≥5% of annual cancer cases (<i>n</i> = 55), or (3) the practice treated ≥50 AYA cancer cases annually (<i>n</i> = 70). Of 271 NCORP practices, 100 (37%) met any criteria, whereas 87 (32%) did not; 84 (31%) could not be classified due to missing or unknown data. <b><i>Conclusion:</i></b> Using an interdisciplinary process, we define practices that treat AYAs in the community. We posit a uniform approach to examine resources and practice capacity for AYAs receiving cancer care across the United States to guide future AYA-focused cancer care delivery research development.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"557-563"},"PeriodicalIF":1.2,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11296314/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139939990","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 : 2024-06-01Epub Date: 2024-01-31DOI: 10.1089/jayao.2023.0108
Caroline S Dorfman, Juliann M Stalls, Rebecca A Shelby, Sarah S Arthur, Kelly Acharya, Brittany Davidson, Cheyenne Corbett, Rachel A Greenup
Purpose: To examine the impact of financial costs on fertility preservation decisions among female young adults (YAs) with cancer. Methods: Female YAs (N = 18; aged 21-36) with a history of cancer and oncology providers (N = 12) were recruited from an National Cancer Institute-designated comprehensive cancer center in a state without insurance coverage for fertility preservation. YAs and providers completed individual interviews and a brief online assessment. Qualitative description using thematic analysis was used to identify, analyze, and report common themes. Descriptive statistics was used to characterize the sample. Results: Female YAs and oncology providers highlighted the critical role that high out-of-pocket costs play in YAs' fertility preservation decisions along with the value that enhanced insurance coverage for fertility preservation would have for increasing female YAs' access to and utilization of fertility preservation. Although providers were concerned about preservation costs for their patients, they reported that their concerns did not impact whether they referred interested female YAs to reproductive specialists. Oncology providers expressed concern about inequities in utilization of fertility preservation for female and racially/ethnically minoritized YAs that were exacerbated by the high out-of-pocket fertility preservation costs. Conclusion: Cost is a significant barrier to fertility preservation for female YA cancer patients. Female YAs of reproductive age may benefit from decision support tools to assist with balancing the cost of fertility preservation with their values and family building goals. Policy-relevant interventions may mitigate cost barriers and improve access to care.
{"title":"Impact of Financial Costs on Patients' Fertility Preservation Decisions: An Examination of Qualitative Data from Female Young Adults with Cancer and Oncology Providers.","authors":"Caroline S Dorfman, Juliann M Stalls, Rebecca A Shelby, Sarah S Arthur, Kelly Acharya, Brittany Davidson, Cheyenne Corbett, Rachel A Greenup","doi":"10.1089/jayao.2023.0108","DOIUrl":"10.1089/jayao.2023.0108","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> To examine the impact of financial costs on fertility preservation decisions among female young adults (YAs) with cancer. <b><i>Methods:</i></b> Female YAs (<i>N</i> = 18; aged 21-36) with a history of cancer and oncology providers (<i>N</i> = 12) were recruited from an National Cancer Institute-designated comprehensive cancer center in a state without insurance coverage for fertility preservation. YAs and providers completed individual interviews and a brief online assessment. Qualitative description using thematic analysis was used to identify, analyze, and report common themes. Descriptive statistics was used to characterize the sample. <b><i>Results:</i></b> Female YAs and oncology providers highlighted the critical role that high out-of-pocket costs play in YAs' fertility preservation decisions along with the value that enhanced insurance coverage for fertility preservation would have for increasing female YAs' access to and utilization of fertility preservation. Although providers were concerned about preservation costs for their patients, they reported that their concerns did not impact whether they referred interested female YAs to reproductive specialists. Oncology providers expressed concern about inequities in utilization of fertility preservation for female and racially/ethnically minoritized YAs that were exacerbated by the high out-of-pocket fertility preservation costs. <b><i>Conclusion:</i></b> Cost is a significant barrier to fertility preservation for female YA cancer patients. Female YAs of reproductive age may benefit from decision support tools to assist with balancing the cost of fertility preservation with their values and family building goals. Policy-relevant interventions may mitigate cost barriers and improve access to care.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"502-513"},"PeriodicalIF":1.2,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139642173","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 : 2024-06-01Epub Date: 2023-12-19DOI: 10.1089/jayao.2023.0079
Isaac J Chamani, Alexandra Gannon, Phillip T Connell, Ajit Bisen, Ertug Kovanci, Haleh Sangi-Haghpeykar, Terri Woodard, Laurie J McKenzie
Purpose: To determine the impact of dose-dense chemotherapy administration on ovarian reserve in women undergoing treatment for breast cancer. Patients and Methods: We conducted a retrospective cohort study of reproductive age women who underwent dose-dense chemotherapy regimens with doxorubicin hydrochloride and cyclophosphamide with or without paclitaxel for a new diagnosis of breast cancer. We compared pre- and post-treatment serum antimullerian hormone (AMH) levels and assessed changes in AMH over time. Results: Fifty-seven patients met inclusion criteria. Median pre-treatment AMH was 2.9 ng/mL, whereas post-treatment AMH was 0.1 ng/mL, demonstrating a dramatic reduction in AMH levels after treatment with a dose-dense regimen. This change was independent of age and was sustained over 12 months from treatment completion. Conclusions: Dose-dense chemotherapy regimens for breast cancer lead to marked and sustained decreases in AMH irrespective of patient age.
{"title":"Dose-Dense Chemotherapy Regimen for Breast Cancer Associated with Significant Decline in Ovarian Reserve.","authors":"Isaac J Chamani, Alexandra Gannon, Phillip T Connell, Ajit Bisen, Ertug Kovanci, Haleh Sangi-Haghpeykar, Terri Woodard, Laurie J McKenzie","doi":"10.1089/jayao.2023.0079","DOIUrl":"10.1089/jayao.2023.0079","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> To determine the impact of dose-dense chemotherapy administration on ovarian reserve in women undergoing treatment for breast cancer. <b><i>Patients and Methods:</i></b> We conducted a retrospective cohort study of reproductive age women who underwent dose-dense chemotherapy regimens with doxorubicin hydrochloride and cyclophosphamide with or without paclitaxel for a new diagnosis of breast cancer. We compared pre- and post-treatment serum antimullerian hormone (AMH) levels and assessed changes in AMH over time. <b><i>Results:</i></b> Fifty-seven patients met inclusion criteria. Median pre-treatment AMH was 2.9 ng/mL, whereas post-treatment AMH was 0.1 ng/mL, demonstrating a dramatic reduction in AMH levels after treatment with a dose-dense regimen. This change was independent of age and was sustained over 12 months from treatment completion. <b><i>Conclusions:</i></b> Dose-dense chemotherapy regimens for breast cancer lead to marked and sustained decreases in AMH irrespective of patient age.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"465-468"},"PeriodicalIF":1.2,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138804096","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: To investigate factors that obstruct and facilitate the use of the foster parent and special adoption systems (i.e., foster systems) by cancer survivors, and examine how to effectively provide information. Methods: This was a cross-sectional study that compared the results of a questionnaire survey of foster parents and adoptive parents (i.e., foster parents) who were and were not cancer survivors belonging to foster parent associations in 33 locations in Japan. This study was supported by a 2022 Ministry of Health, Labor, and Welfare Grant-in-Aid for Scientific Research (Grant No. 20EA1004). Results: "Lack of information," an obstructive factor and "Sympathetic understanding and cooperation from my partner and family," a facilitative factor were the highest score in both groups. Significant differences between the two groups were found in "Support from government agencies and others for foster parents," a facilitative factor, which was lower in the cancer survivors' group. There were no other significant differences between both the groups. Conclusion: This study found that when considering the use of the foster systems, a lack of information was the biggest obstructive factor and family understanding was the most helpful for both cancer survivors and noncancer groups. It was thought that stronger government support for cancer survivors might encourage cancer survivors to consider becoming foster parents. It would be effective for cancer treatment facilities, reproductive medical facilities, the government, and foster parent associations to work together to provide information carefully to cancer survivors.
{"title":"Differences Between Cancer Survivors and Healthy Subjects in Factors that Facilitate and Obstruct the Use of the Foster Parent System and Special Adoption System: A Nationwide Cross-Sectional Study in Japan.","authors":"Yukiko Takekawa, Kouhei Sugimoto, Kiyo Masaki, Tomoe Koizumi, Hirofumi Mori, Eriko Shiraishi, Tadashi Maezawa, Shinji Tanigaki, Chiaki Shirai, Nao Suzuki","doi":"10.1089/jayao.2023.0088","DOIUrl":"10.1089/jayao.2023.0088","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> To investigate factors that obstruct and facilitate the use of the foster parent and special adoption systems (i.e., foster systems) by cancer survivors, and examine how to effectively provide information. <b><i>Methods:</i></b> This was a cross-sectional study that compared the results of a questionnaire survey of foster parents and adoptive parents (i.e., foster parents) who were and were not cancer survivors belonging to foster parent associations in 33 locations in Japan. This study was supported by a 2022 Ministry of Health, Labor, and Welfare Grant-in-Aid for Scientific Research (Grant No. 20EA1004). <b><i>Results:</i></b> \"Lack of information,\" an obstructive factor and \"Sympathetic understanding and cooperation from my partner and family,\" a facilitative factor were the highest score in both groups. Significant differences between the two groups were found in \"Support from government agencies and others for foster parents,\" a facilitative factor, which was lower in the cancer survivors' group. There were no other significant differences between both the groups. <b><i>Conclusion:</i></b> This study found that when considering the use of the foster systems, a lack of information was the biggest obstructive factor and family understanding was the most helpful for both cancer survivors and noncancer groups. It was thought that stronger government support for cancer survivors might encourage cancer survivors to consider becoming foster parents. It would be effective for cancer treatment facilities, reproductive medical facilities, the government, and foster parent associations to work together to provide information carefully to cancer survivors.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"534-540"},"PeriodicalIF":1.2,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139491427","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}