Chiara Acquati, Kristin Cotter-Mena, Chelsea Sanchez, Amy LaMarca-Lyon, Anao Zhang, Michael Roth
Objective: Young women diagnosed with breast cancer report greater psychological and physical morbidity than both older women and healthy peers. Similarly, young partners experience elevated cancer-related distress. Psychosocial oncology programs are not frequently attuned to the needs of young adult patients and may exclude their social networks. This marks a critical gap in psychosocial care delivery. The study investigated unmet service needs, psychological distress, and care preferences of young couples managing breast cancer in the first year post-diagnosis. Methods: Forty dyads (n = 80) of women aged 18-45 and their partners completed measures of anxiety (Generalized Anxiety Disorder-7), depression (Patient Health Questionnaire-9), and a service use questionnaire adapted from previously published Adolescent and Young Adult (AYA) literature. The resulting 25 items assessed perceived care needs and service utilization across three domains: informational, emotional/supportive, and practical issues. Descriptive statistics, cross-tabulations, and bivariate correlations were computed. Actor and partner effects of unmet needs on mental health outcomes were investigated with generalized estimating equations (GEE). Results: Patients and partners were in their late thirties, mostly non-Hispanic White, married, highly educated, and employed. Approximately 60% of patients and 43%-66% of partners presented one or more unmet service needs, which correlated with greater distress. Unmet needs about information related to exercise, recurrence, nutrition, and symptom management were prevalent. Unmet supportive service needs of both patients and partners included age-appropriate programs, sexual health, and family counseling. Women reported practical needs for work/school accommodations, integrative care, financial issues and health coverage; while financial concerns, health insurance, and caregiving demands were priorities for partners. Conclusion: Young couples facing early-onset breast cancer experience large proportions of unmet service needs. These challenges were exacerbated by the lack of developmentally targeted psychosocial programs pertaining to informational, supportive, and practical care needs. Enhancing providers' understanding of the psychosocial issues affecting young couples' well-being, and the implementation of systematic procedures to detect and respond to their distress, is urgently needed.
{"title":"Informing Psychosocial Care for Young Couples Coping with Early-Onset Breast Cancer: A Cross-Sectional Examination of Unmet Service Needs and Their Association with Psychological Distress in the First Year Post-Diagnosis.","authors":"Chiara Acquati, Kristin Cotter-Mena, Chelsea Sanchez, Amy LaMarca-Lyon, Anao Zhang, Michael Roth","doi":"10.1089/jayao.2024.0002","DOIUrl":"https://doi.org/10.1089/jayao.2024.0002","url":null,"abstract":"<p><p><b><i>Objective:</i></b> Young women diagnosed with breast cancer report greater psychological and physical morbidity than both older women and healthy peers. Similarly, young partners experience elevated cancer-related distress. Psychosocial oncology programs are not frequently attuned to the needs of young adult patients and may exclude their social networks. This marks a critical gap in psychosocial care delivery. The study investigated unmet service needs, psychological distress, and care preferences of young couples managing breast cancer in the first year post-diagnosis. <b><i>Methods:</i></b> Forty dyads (<i>n</i> = 80) of women aged 18-45 and their partners completed measures of anxiety (Generalized Anxiety Disorder-7), depression (Patient Health Questionnaire-9), and a service use questionnaire adapted from previously published Adolescent and Young Adult (AYA) literature. The resulting 25 items assessed perceived care needs and service utilization across three domains: informational, emotional/supportive, and practical issues. Descriptive statistics, cross-tabulations, and bivariate correlations were computed. Actor and partner effects of unmet needs on mental health outcomes were investigated with generalized estimating equations (GEE). <b><i>Results:</i></b> Patients and partners were in their late thirties, mostly non-Hispanic White, married, highly educated, and employed. Approximately 60% of patients and 43%-66% of partners presented one or more unmet service needs, which correlated with greater distress. Unmet needs about information related to exercise, recurrence, nutrition, and symptom management were prevalent. Unmet supportive service needs of both patients and partners included age-appropriate programs, sexual health, and family counseling. Women reported practical needs for work/school accommodations, integrative care, financial issues and health coverage; while financial concerns, health insurance, and caregiving demands were priorities for partners. <b><i>Conclusion:</i></b> Young couples facing early-onset breast cancer experience large proportions of unmet service needs. These challenges were exacerbated by the lack of developmentally targeted psychosocial programs pertaining to informational, supportive, and practical care needs. Enhancing providers' understanding of the psychosocial issues affecting young couples' well-being, and the implementation of systematic procedures to detect and respond to their distress, is urgently needed.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2024-10-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142500768","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}
Katja Reuter, Michael Leyderman, Eric P Billinson, Josh F Wallace, Meghan Moran, Joel Milam
Background: The growing number of adolescent and young adult (AYA) cancer survivors and their unmet needs demand innovative communication and care strategies. This study uses social media data to examine how survivors' demographic and clinical characteristics relate to their social media use. Methods: Data from 300 AYA cancer survivors on six social media sites (YouTube, Instagram, Facebook, TikTok, Reddit, X/formerly Twitter) were collected between August 2022 and March 2023 and analyzed using descriptive statistics and statistical tests (chi-square, Fisher's exact, Welch, Games-Howell post-hoc, logistic regression). Results: Significant differences were observed across platforms for mean current age (p < 0.001) and age at diagnosis (p < 0.001). We also found significant associations between social media type used and current age, age at diagnosis, years since diagnosis, and the timing of social media account creation. AYAs who created their social media account post-diagnosis were less likely to use YouTube (p = 0.003) and more likely to use Facebook (p = 0.009). Treatment completion was associated with increased use of platform X (p = 0.004). Non-White individuals in our sample were less likely to use Facebook (p = 0.008). Significant associations were found between observed sex and platform usage (p < 0.001), with males more likely to use Reddit (p < 0.001) and X (p < 0.001). Conclusions: Significant associations were found between demographic and clinical attributes of AYA cancer survivors and the type of social media they used, suggesting that AYA-specific social media-based interventions should be tailored to subgroup characteristics (e.g., social media type, developmental stage based on age at diagnosis and current age, sex).
{"title":"Associations Between Characteristics of Adolescent and Young Adult Cancer Survivors and Their Use of Different Social Media Platforms: An Observational Study of Social Media Accounts.","authors":"Katja Reuter, Michael Leyderman, Eric P Billinson, Josh F Wallace, Meghan Moran, Joel Milam","doi":"10.1089/jayao.2023.0159","DOIUrl":"10.1089/jayao.2023.0159","url":null,"abstract":"<p><p><b><i>Background:</i></b> The growing number of adolescent and young adult (AYA) cancer survivors and their unmet needs demand innovative communication and care strategies. This study uses social media data to examine how survivors' demographic and clinical characteristics relate to their social media use. <b><i>Methods:</i></b> Data from 300 AYA cancer survivors on six social media sites (YouTube, Instagram, Facebook, TikTok, Reddit, X/formerly Twitter) were collected between August 2022 and March 2023 and analyzed using descriptive statistics and statistical tests (chi-square, Fisher's exact, Welch, Games-Howell post-hoc, logistic regression). <b><i>Results:</i></b> Significant differences were observed across platforms for mean current age (<i>p</i> < 0.001) and age at diagnosis (<i>p</i> < 0.001). We also found significant associations between social media type used and current age, age at diagnosis, years since diagnosis, and the timing of social media account creation. AYAs who created their social media account post-diagnosis were less likely to use YouTube (<i>p</i> = 0.003) and more likely to use Facebook (<i>p</i> = 0.009). Treatment completion was associated with increased use of platform X (<i>p</i> = 0.004). Non-White individuals in our sample were less likely to use Facebook (<i>p</i> = 0.008). Significant associations were found between observed sex and platform usage (<i>p</i> < 0.001), with males more likely to use Reddit (<i>p</i> < 0.001) and X (<i>p</i> < 0.001). <b><i>Conclusions:</i></b> Significant associations were found between demographic and clinical attributes of AYA cancer survivors and the type of social media they used, suggesting that AYA-specific social media-based interventions should be tailored to subgroup characteristics (e.g., social media type, developmental stage based on age at diagnosis and current age, sex).</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2024-10-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142465945","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: The study investigated the impact of cervical cancer and human papillomavirus (HPV) vaccine education on university students' vaccination perceptions. Methods: This research was conducted with pre- posttest and quasi-experimental design with students enrolled in the department of health services of a university. The sample of the study consisted of 87 students (n = 43 in the intervention group, n = 44 in the control group). Research data were collected between June 29 and July 22, 2022, using the Introductory Information Form and HPV Information Scale. An informative training program about cervical cancer and HPV was applied to the intervention group. This training program was carried out in two separate sessions. In the first session, information was given about the prevalence, pathology, and risk factors of cervical cancer. In the second session, general information about HPV, details about the vaccine, and vaccination programs were given. Training sessions are organized as small group discussions and seminars covering relevant topics. Results: In our study, the average age of our students was 20.7 ± 2.5 years, and in both groups, the proportion of students who did not know about HPV, which can cause cervical cancer, was quite high (74.4%, 68.2%). The majority of the control and intervention groups needed health education about STDs. There were statistically significant differences between the control and intervention groups in terms of the pre-test and posttest Knowledge of HPV Scale scores (p < 0.05). Conclusion: It was found that the education on cervical cancer and HPV positively affected the perspectives of the students on vaccination. Interactive and group-oriented education increases knowledge sharing by encouraging interaction among students. In this way, a broader knowledge base about cervical cancer and HPV can be created, and misinformation can be corrected.
{"title":"The Effect of Cervical Cancer and Human Papillomavirus Vaccine Education on Vaccination Perception in University Students: A Quasi-Experimental Controlled Educational Intervention.","authors":"Ulku Saygili Duzova, Emine Kaplan Serin, Ayse Mutlu, Nuray Ocal, Hatice Akkus, Nebahat Toprak, Derya Ceylan","doi":"10.1089/jayao.2024.0121","DOIUrl":"https://doi.org/10.1089/jayao.2024.0121","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> The study investigated the impact of cervical cancer and human papillomavirus (HPV) vaccine education on university students' vaccination perceptions. <b><i>Methods:</i></b> This research was conducted with pre- posttest and quasi-experimental design with students enrolled in the department of health services of a university. The sample of the study consisted of 87 students (<i>n</i> = 43 in the intervention group, <i>n</i> = 44 in the control group). Research data were collected between June 29 and July 22, 2022, using the Introductory Information Form and HPV Information Scale. An informative training program about cervical cancer and HPV was applied to the intervention group. This training program was carried out in two separate sessions. In the first session, information was given about the prevalence, pathology, and risk factors of cervical cancer. In the second session, general information about HPV, details about the vaccine, and vaccination programs were given. Training sessions are organized as small group discussions and seminars covering relevant topics. <b><i>Results:</i></b> In our study, the average age of our students was 20.7 ± 2.5 years, and in both groups, the proportion of students who did not know about HPV, which can cause cervical cancer, was quite high (74.4%, 68.2%). The majority of the control and intervention groups needed health education about STDs. There were statistically significant differences between the control and intervention groups in terms of the pre-test and posttest Knowledge of HPV Scale scores (<i>p</i> < 0.05). <b><i>Conclusion:</i></b> It was found that the education on cervical cancer and HPV positively affected the perspectives of the students on vaccination. Interactive and group-oriented education increases knowledge sharing by encouraging interaction among students. In this way, a broader knowledge base about cervical cancer and HPV can be created, and misinformation can be corrected.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2024-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142465947","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}
Halil Göksel Güzel, Murat Koçer, Mustafa Yıldız, Banu Öztürk, Derya Kıvrak Salim, Mustafa Karaca
Purpose: Individuals below the age of 40 make up only 3%-11% of colorectal cancer (CRC) cases. In this study, we aimed to review clinicopathological characteristics of rectal cancer in young adults. Methods: Rectal adenocancer patients aged ≤40 were included in this study from Antalya Training and Research Hospital. A single-arm descriptive study was designed. Results: There were 85 patients in the final analyses (n = 85). The median age was 37 (19-40). Mucinous adenocarcinoma and signet-cell carcinoma rates were 11.8% for each. Twenty patients (24.4%) had high-grade cancer. Fourteen patients (16.5%) had CRC history in a first-degree relative. None of the patients were diagnosed through a screening test. Of the 85 patients, 41 (48.2%) were stage 3 and 23 (27.1%) were stage 4 at the time of diagnosis. Thirty-four (54.8%) of the 62 nonmetastatic patients had neoadjuvant and 27 (43.5%) had adjuvant treatment because of having an upfront surgery before presentation. In the nonmetastatic population, the 5-year disease-free survival rate was 69.7 ± 6.5%. De-novo metastatic underwent chemotherapy, and biological agents were administered when feasible. KRAS mutation rate was 56.5% among metastatic patients. The median progression-free survival for the first-line treatment was 11.2 months (5.7-16.6), and the median overall survival was 22.3 months (15.4-29.1). Conclusion: We demonstrated that rectal cancer is usually diagnosed at late stages in young individuals which is compatible with the previous reports. Low cancer awareness in young patients and their caregivers and adverse histological features were advocated as the reason for the diagnostic delay. However, future studies may elucidate the reason behind the common diagnosis at advanced stages.
{"title":"Rectal Cancer in Young Adults: A Single Center Experience.","authors":"Halil Göksel Güzel, Murat Koçer, Mustafa Yıldız, Banu Öztürk, Derya Kıvrak Salim, Mustafa Karaca","doi":"10.1089/jayao.2024.0090","DOIUrl":"https://doi.org/10.1089/jayao.2024.0090","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Individuals below the age of 40 make up only 3%-11% of colorectal cancer (CRC) cases. In this study, we aimed to review clinicopathological characteristics of rectal cancer in young adults. <b><i>Methods:</i></b> Rectal adenocancer patients aged ≤40 were included in this study from Antalya Training and Research Hospital. A single-arm descriptive study was designed. <b><i>Results:</i></b> There were 85 patients in the final analyses (<i>n</i> = 85). The median age was 37 (19-40). Mucinous adenocarcinoma and signet-cell carcinoma rates were 11.8% for each. Twenty patients (24.4%) had high-grade cancer. Fourteen patients (16.5%) had CRC history in a first-degree relative. None of the patients were diagnosed through a screening test. Of the 85 patients, 41 (48.2%) were stage 3 and 23 (27.1%) were stage 4 at the time of diagnosis. Thirty-four (54.8%) of the 62 nonmetastatic patients had neoadjuvant and 27 (43.5%) had adjuvant treatment because of having an upfront surgery before presentation. In the nonmetastatic population, the 5-year disease-free survival rate was 69.7 ± 6.5%. De-novo metastatic underwent chemotherapy, and biological agents were administered when feasible. KRAS mutation rate was 56.5% among metastatic patients. The median progression-free survival for the first-line treatment was 11.2 months (5.7-16.6), and the median overall survival was 22.3 months (15.4-29.1). <b><i>Conclusion:</i></b> We demonstrated that rectal cancer is usually diagnosed at late stages in young individuals which is compatible with the previous reports. Low cancer awareness in young patients and their caregivers and adverse histological features were advocated as the reason for the diagnostic delay. However, future studies may elucidate the reason behind the common diagnosis at advanced stages.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2024-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142465946","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}
Ji Yeon Han, Hoon Kim, Yun Soo Hong, Minhee Lee, Soo Jin Han, Seung-Yup Ku
Purpose: Oocyte and embryo cryopreservation before gonadotoxic treatment are established methods to increase the likelihood of live births. Although several sociodemographic factors were found to be associated with undergoing fertility preservation (FP) treatment, clinical characteristics such as planned immediate chemotherapy were not fully investigated. We aimed to investigate whether the planned immediate chemotherapy is related to the decision to undergo oocyte/embryo cryopreservation for FP with adjustment for other clinical characteristics. Methods: This institutional cohort study included 491 premenopausal women aged 19 years or older who visited the FP clinic at a tertiary medical center between 2006 and 2019. The primary outcome was whether the participants underwent oocyte/embryo cryopreservation. We evaluated the odds ratios (ORs) and corresponding 95% confidence intervals (CIs) of undergoing oocyte/embryo cryopreservation according to whether immediate chemotherapy was planned using univariable and multivariable logistic regression. Results: Women scheduled for immediate chemotherapy were much less likely to undergo oocyte/embryo cryopreservation than women not scheduled for immediate chemotherapy (OR = 0.46, 95% CI 0.27-0.76) in univariable logistic regression analysis. After adjustment for covariates such as marital status, type of malignancies, and calendar year period, women scheduled for immediate chemotherapy were still less likely to undergo oocyte/embryo cryopreservation than women not scheduled for immediate chemotherapy (OR = 0.31, 95% CI: 0.17-0.56). The association was not different according to the type of malignancies (p for interaction = 0.13). Regarding breast cancer, the OR for undergoing oocyte/embryo cryopreservation in women scheduled for immediate chemotherapy was robust compared with those not planned for immediate chemotherapy (OR = 0.25, 95% CI: 0.12-0.53). Conclusion: The present study demonstrated that planned immediate chemotherapy was negatively associated with undergoing oocyte/embryo cryopreservation. This information can be helpful for FP counseling.
{"title":"Planned Immediate Chemotherapy and Cryopreservation of Oocytes or Embryos for Fertility Preservation in Women with Malignancies.","authors":"Ji Yeon Han, Hoon Kim, Yun Soo Hong, Minhee Lee, Soo Jin Han, Seung-Yup Ku","doi":"10.1089/jayao.2023.0180","DOIUrl":"https://doi.org/10.1089/jayao.2023.0180","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Oocyte and embryo cryopreservation before gonadotoxic treatment are established methods to increase the likelihood of live births. Although several sociodemographic factors were found to be associated with undergoing fertility preservation (FP) treatment, clinical characteristics such as planned immediate chemotherapy were not fully investigated. We aimed to investigate whether the planned immediate chemotherapy is related to the decision to undergo oocyte/embryo cryopreservation for FP with adjustment for other clinical characteristics. <b><i>Methods:</i></b> This institutional cohort study included 491 premenopausal women aged 19 years or older who visited the FP clinic at a tertiary medical center between 2006 and 2019. The primary outcome was whether the participants underwent oocyte/embryo cryopreservation. We evaluated the odds ratios (ORs) and corresponding 95% confidence intervals (CIs) of undergoing oocyte/embryo cryopreservation according to whether immediate chemotherapy was planned using univariable and multivariable logistic regression. <b><i>Results:</i></b> Women scheduled for immediate chemotherapy were much less likely to undergo oocyte/embryo cryopreservation than women not scheduled for immediate chemotherapy (OR = 0.46, 95% CI 0.27-0.76) in univariable logistic regression analysis. After adjustment for covariates such as marital status, type of malignancies, and calendar year period, women scheduled for immediate chemotherapy were still less likely to undergo oocyte/embryo cryopreservation than women not scheduled for immediate chemotherapy (OR = 0.31, 95% CI: 0.17-0.56). The association was not different according to the type of malignancies (<i>p</i> for interaction = 0.13). Regarding breast cancer, the OR for undergoing oocyte/embryo cryopreservation in women scheduled for immediate chemotherapy was robust compared with those not planned for immediate chemotherapy (OR = 0.25, 95% CI: 0.12-0.53). <b><i>Conclusion:</i></b> The present study demonstrated that planned immediate chemotherapy was negatively associated with undergoing oocyte/embryo cryopreservation. This information can be helpful for FP counseling.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2024-10-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142390655","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 : 2024-10-01Epub Date: 2024-05-29DOI: 10.1089/jayao.2024.0024
Paul R D'Alessandro, Meghan E McGrady, Jason M Nagata, Robin E Norris, Joseph G Pressey
This cross-sectional study described prevalent body image (BI) concerns among adolescents and young adults (AYAs) with neoplasms who received treatment at a quaternary care children's hospital. Thirty-two AYAs, aged 15-39 years, completed questionnaires assessing BI within six months of diagnosis. The most frequently endorsed questionnaire items included the following: desire for increased physical fitness (62.5%), self-consciousness about hair (45.2%), weight dissatisfaction (40.6%), lack of strength (37.5%), wearing loose clothing to hide one's body (37.5%), decreased agility (34.4%), shape dissatisfaction (32.2%), and self-perception of too much body fat (31.3%). Awareness of AYA BI concerns during treatment may generate early intervention targeting this complex issue.
{"title":"Body Image Concerns in Adolescent and Young Adult Oncology Patients within Six Months of Upfront Diagnosis.","authors":"Paul R D'Alessandro, Meghan E McGrady, Jason M Nagata, Robin E Norris, Joseph G Pressey","doi":"10.1089/jayao.2024.0024","DOIUrl":"10.1089/jayao.2024.0024","url":null,"abstract":"<p><p>This cross-sectional study described prevalent body image (BI) concerns among adolescents and young adults (AYAs) with neoplasms who received treatment at a quaternary care children's hospital. Thirty-two AYAs, aged 15-39 years, completed questionnaires assessing BI within six months of diagnosis. The most frequently endorsed questionnaire items included the following: desire for increased physical fitness (62.5%), self-consciousness about hair (45.2%), weight dissatisfaction (40.6%), lack of strength (37.5%), wearing loose clothing to hide one's body (37.5%), decreased agility (34.4%), shape dissatisfaction (32.2%), and self-perception of too much body fat (31.3%). Awareness of AYA BI concerns during treatment may generate early intervention targeting this complex issue.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"792-798"},"PeriodicalIF":1.2,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141160322","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 : 2024-10-01Epub Date: 2024-07-03DOI: 10.1089/jayao.2024.0041
John M Salsman, Chandylen L Nightingale, Mollie R Canzona, Dianna S Howard, Reginald D Tucker-Seeley, Kimberly D Wiseman, David E Victorson, Joanna M Robles, Michael Roth, Regina Smith, Bryce B Reeve, Suzanne C Danhauer
Purpose: Financial hardship as a result of cancer treatment can have a significant and lasting negative impact on adolescents and young adults (AYAs) and their families. To address a lack of developmentally informed and psychometrically sound measures of financial hardship for AYAs and their caregivers, we used rigorous measurement development methods recommended by the National Institutes of Health's Patient-Reported Outcomes Measurement Information System® (PROMIS®) to determine comprehensibility and relevance of measure content. Methods: Our multi-step approach involved item identification, refinement, and generation; translatability and reading level review; and cognitive interviews. A purposive sample of 25 AYAs and 10 caregivers participated, ensuring representation across age, education, gender, race/ethnicity, and cancer type. Results: Fifty patient-reported and caregiver-reported items were developed across material, psychosocial, and behavioral subdomains of financial hardship. Translatability and reading level reviews resulted in 22 patient-reported and 25 caregiver-reported items being rewritten. Eighty-eight percent of patients and all caregivers described the items as easy to answer. Younger AYAs (15 to 25 years of age) were more likely to say the items were less relevant for them. Forty-six patient-reported and 48 caregiver-reported items were recommended for further testing. Conclusion: This study is the first to use in-depth qualitative methods to center AYA patient and caregiver experiences in the creation of new measures of financial hardship. Data support the comprehensibility and content validity of these preliminary item banks. Future large-scale, quantitative testing will lead to additional refinements and support the use of short forms and computer-adaptive testing for a diverse sample of AYAs and their caregivers.
{"title":"Asking the \"Right\" Questions about Financial Hardship: Using Cognitive Interviews with Adolescents and Young Adults with Cancer and Their Caregivers to Inform Measure Development.","authors":"John M Salsman, Chandylen L Nightingale, Mollie R Canzona, Dianna S Howard, Reginald D Tucker-Seeley, Kimberly D Wiseman, David E Victorson, Joanna M Robles, Michael Roth, Regina Smith, Bryce B Reeve, Suzanne C Danhauer","doi":"10.1089/jayao.2024.0041","DOIUrl":"10.1089/jayao.2024.0041","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Financial hardship as a result of cancer treatment can have a significant and lasting negative impact on adolescents and young adults (AYAs) and their families. To address a lack of developmentally informed and psychometrically sound measures of financial hardship for AYAs and their caregivers, we used rigorous measurement development methods recommended by the National Institutes of Health's Patient-Reported Outcomes Measurement Information System® (PROMIS®) to determine comprehensibility and relevance of measure content. <b><i>Methods:</i></b> Our multi-step approach involved item identification, refinement, and generation; translatability and reading level review; and cognitive interviews. A purposive sample of 25 AYAs and 10 caregivers participated, ensuring representation across age, education, gender, race/ethnicity, and cancer type. <b><i>Results:</i></b> Fifty patient-reported and caregiver-reported items were developed across material, psychosocial, and behavioral subdomains of financial hardship. Translatability and reading level reviews resulted in 22 patient-reported and 25 caregiver-reported items being rewritten. Eighty-eight percent of patients and all caregivers described the items as easy to answer. Younger AYAs (15 to 25 years of age) were more likely to say the items were less relevant for them. Forty-six patient-reported and 48 caregiver-reported items were recommended for further testing. <b><i>Conclusion:</i></b> This study is the first to use in-depth qualitative methods to center AYA patient and caregiver experiences in the creation of new measures of financial hardship. Data support the comprehensibility and content validity of these preliminary item banks. Future large-scale, quantitative testing will lead to additional refinements and support the use of short forms and computer-adaptive testing for a diverse sample of AYAs and their caregivers.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"760-767"},"PeriodicalIF":1.2,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11807903/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141498108","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 : 2024-10-01Epub Date: 2024-03-22DOI: 10.1089/jayao.2023.0164
Danielle R Weidman, Sandy Che-Eun Serena Lee, Philippe Desmarais, Katye Stevens, Christopher A Klinger, Heather Colquhoun, Jacqueline L Bender, Abha Gupta
Health care providers (HCPs) play a key role in psychosocial care of adolescents with cancer (AWC) and present a unique perspective. This prospective study included a brief survey followed by an interview, seeking to understand HCPs' viewpoints on peer support needs of AWC. Participants were 10 multidisciplinary HCPs with 5-30 years of experience. Three key themes found were: observations made and relationships with AWC; challenges to providing support; and potential peer support interventions. HCPs want to provide peer support resources but lack adequate information. Next steps: interventions should include information dissemination to all HCPs caring for AWC.
{"title":"Perspectives of Health Care Providers on Peer Support for Adolescents with Cancer in Pediatrics.","authors":"Danielle R Weidman, Sandy Che-Eun Serena Lee, Philippe Desmarais, Katye Stevens, Christopher A Klinger, Heather Colquhoun, Jacqueline L Bender, Abha Gupta","doi":"10.1089/jayao.2023.0164","DOIUrl":"10.1089/jayao.2023.0164","url":null,"abstract":"<p><p>Health care providers (HCPs) play a key role in psychosocial care of adolescents with cancer (AWC) and present a unique perspective. This prospective study included a brief survey followed by an interview, seeking to understand HCPs' viewpoints on peer support needs of AWC. Participants were 10 multidisciplinary HCPs with 5-30 years of experience. Three key themes found were: observations made and relationships with AWC; challenges to providing support; and potential peer support interventions. HCPs want to provide peer support resources but lack adequate information. Next steps: interventions should include information dissemination to all HCPs caring for AWC.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"785-791"},"PeriodicalIF":1.2,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140206967","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 : 2024-10-01Epub Date: 2024-05-21DOI: 10.1089/jayao.2024.0022
Allison C Grimes, Aaron J Sugalski, Michelle M Nuño, Subhash Ramakrishnan, Melissa P Beauchemin, Paula D Robinson, Nancy Santesso, Alexandra M Walsh, Andrea R Wrightson, Lolie C Yu, Susan K Parsons, Lillian Sung, L Lee Dupuis
Background: The primary objective was to measure adherence to clinical practice guideline (CPG) recommendations for fertility preservation (FP) in pediatric cancer patients treated in National Cancer Institute Community Oncology Research Program (NCORP) sites. Secondary objectives were to describe factors such as site size associated with CPG-inconsistent care delivery and cryopreservation completion. Methods: This retrospective, multicenter study included patients 15 to 21 years old with a first cancer diagnosis from January 2014 through December 2015 who were previously enrolled to a Children's Oncology Group (COG) study and received care at a participating NCORP site. Patients were randomly selected from a list generated by the COG for chart review by participating sites. Primary outcome was care delivery that was inconsistent with a strong CPG recommendation on FP, namely discussion and offering of FP options before cancer treatment initiation, as adjudicated centrally by a panel. Results: A total of 129 patients from 25 sites were included. Among these, 48% (62/129) received CPG-inconsistent care. Most CPG-inconsistent care was due to lack of FP discussion documentation (93.5%, 58/62). Small site size, treatment at a pediatric (vs mixed adult/pediatric) site, and female sex were associated with higher odds of CPG-inconsistent care delivery. Conclusions: Newly diagnosed pediatric cancer patients often received CPG-inconsistent care for FP, with disproportionate gaps noted for females, and those treated at smaller or pediatric NCORP sites. The primary reason for CPG-inconsistent care is lack of FP discussion from clinicians. Opportunities to improve FP CPG implementation are highlighted.
{"title":"Clinical Practice Guideline-Inconsistent Management of Fertility Preservation in Pediatric Cancer Patients in Community Settings: A Children's Oncology Group Study.","authors":"Allison C Grimes, Aaron J Sugalski, Michelle M Nuño, Subhash Ramakrishnan, Melissa P Beauchemin, Paula D Robinson, Nancy Santesso, Alexandra M Walsh, Andrea R Wrightson, Lolie C Yu, Susan K Parsons, Lillian Sung, L Lee Dupuis","doi":"10.1089/jayao.2024.0022","DOIUrl":"10.1089/jayao.2024.0022","url":null,"abstract":"<p><p><b><i>Background:</i></b> The primary objective was to measure adherence to clinical practice guideline (CPG) recommendations for fertility preservation (FP) in pediatric cancer patients treated in National Cancer Institute Community Oncology Research Program (NCORP) sites. Secondary objectives were to describe factors such as site size associated with CPG-inconsistent care delivery and cryopreservation completion. <b><i>Methods:</i></b> This retrospective, multicenter study included patients 15 to 21 years old with a first cancer diagnosis from January 2014 through December 2015 who were previously enrolled to a Children's Oncology Group (COG) study and received care at a participating NCORP site. Patients were randomly selected from a list generated by the COG for chart review by participating sites. Primary outcome was care delivery that was inconsistent with a strong CPG recommendation on FP, namely discussion and offering of FP options before cancer treatment initiation, as adjudicated centrally by a panel. <b><i>Results:</i></b> A total of 129 patients from 25 sites were included. Among these, 48% (62/129) received CPG-inconsistent care. Most CPG-inconsistent care was due to lack of FP discussion documentation (93.5%, 58/62). Small site size, treatment at a pediatric (vs mixed adult/pediatric) site, and female sex were associated with higher odds of CPG-inconsistent care delivery. <b><i>Conclusions:</i></b> Newly diagnosed pediatric cancer patients often received CPG-inconsistent care for FP, with disproportionate gaps noted for females, and those treated at smaller or pediatric NCORP sites. The primary reason for CPG-inconsistent care is lack of FP discussion from clinicians. Opportunities to improve FP CPG implementation are highlighted.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"776-784"},"PeriodicalIF":16.4,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11564673/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141070577","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 : 2024-10-01Epub Date: 2024-04-29DOI: 10.1089/jayao.2023.0174
Karen J Wernli, Eric C Haupt, Neetu Chawla, Thearis Osuji, Ernest Shen, Andrew B Smitherman, Mallory Casperson, Anne C Kirchhoff, Bradley J Zebrack, Theresa H M Keegan, Lawrence Kushi, Christopher Baggett, Heydon K Kaddas, Kathryn J Ruddy, Candice A M Sauder, Theodore Wun, Marlaine Figueroa Gray, Jessica Chubak, Hazel Nichols, Erin E Hahn
Purpose: Understanding emergency department (ED) use in adolescent and young adult (AYA) survivors could identify gaps in AYA survivorship. Methods: We conducted a cohort study of 7925 AYA survivors (aged 15-39 years at diagnosis) who were 2-5 years from diagnosis in 2006-2020 at Kaiser Permanente Southern California. We calculated ED utilization rates overall and by indication of the encounter (headache, cardiac issues, and suicide attempts). We estimated rate changes by survivorship year and patient factors associated with ED visit using a Poisson model. Results: Cohort was 65.4% women, 45.8% Hispanic, with mean age at diagnosis at 31.3 years. Overall, 38% of AYA survivors had ≥1 ED visit (95th percentile: 5 ED visits). Unadjusted ED rates declined from 374.2/1000 person-years (PY) in Y2 to 327.2 in Y5 (p change < 0.001). Unadjusted rates declined for headache, cardiac issues, and suicide attempts. Factors associated with increased ED use included: age 20-24 at diagnosis [relative risk (RR) = 1.30, 95% CI 1.09-1.56 vs. 35-39 years]; female (RR = 1.27, 95% CI 1.11-1.47 vs. male); non-Hispanic Black race/ethnicity (RR 1.64, 95% CI 1.38-1.95 vs. non-Hispanic white); comorbidity (RR = 1.34, 95% CI 1.16-1.55 for 1 and RR 1.80, 95% CI 1.40-2.30 for 2+ vs. none); and public insurance (RR = 1.99, 95% CI 1.70-2.32 vs. private). Compared with thyroid cancer, cancers associated with increased ED use were breast (RR = 1.45, 95% CI 1.24-1.70), cervical (RR = 2.18, 95% CI 1.76-2.71), colorectal (RR = 2.34, 95% CI 1.94-2.81), and sarcoma (RR = 1.39, 95% CI 1.03-1.88). Conclusion: ED utilization declined as time from diagnosis elapsed, but higher utilization was associated with social determinants of health and cancer types.
目的:了解青少年和年轻成人(AYA)幸存者使用急诊科(ED)的情况,可以找出 AYA 幸存者中存在的差距。方法:我们对 7925 名青少年和青年患者进行了队列研究:我们对南加州凯泽医疗集团(Kaiser Permanente Southern California)2006 年至 2020 年期间 7925 名青壮年幸存者(确诊时年龄在 15-39 岁之间)进行了一项队列研究,这些幸存者在确诊后 2-5 年内使用了急诊室。我们计算了总体急诊室使用率,并按就诊指征(头痛、心脏问题和自杀未遂)进行了分类。我们使用泊松模型估算了按存活年份和与急诊室就诊相关的患者因素分列的比率变化。结果如下群组中 65.4% 为女性,45.8% 为西班牙裔,诊断时的平均年龄为 31.3 岁。总体而言,38% 的青壮年幸存者≥1 次急诊就诊(第 95 百分位数:5 次急诊就诊)。未经调整的急诊就诊率从第二年的 374.2/1000 人-年 (PY) 下降到第五年的 327.2(p 变化 < 0.001)。头痛、心脏问题和自杀未遂的未调整率均有所下降。与增加使用急诊室相关的因素包括:诊断时年龄为 20-24 岁[相对风险 (RR) = 1.30,95% CI 1.09-1.56 vs. 35-39 岁];女性(RR = 1.27,95% CI 1.11-1.47 vs. 男性);非西班牙裔黑人种族/民族(RR 1.64, 95% CI 1.38-1.95 vs. non-Hispanic white);合并症(RR = 1.34, 95% CI 1.16-1.55 for 1 and RR 1.80, 95% CI 1.40-2.30 for 2+ vs. none);公共保险(RR = 1.99, 95% CI 1.70-2.32 vs. private)。与甲状腺癌相比,乳腺癌(RR = 1.45,95% CI 1.24-1.70)、宫颈癌(RR = 2.18,95% CI 1.76-2.71)、结直肠癌(RR = 2.34,95% CI 1.94-2.81)和肉瘤(RR = 1.39,95% CI 1.03-1.88)与使用 ED 的增加相关。结论:随着诊断时间的推移,急诊室利用率有所下降,但利用率的提高与健康的社会决定因素和癌症类型有关。
{"title":"Emergency Department Use in Adolescent and Young Adult Cancer Early Survivors from 2006 to 2020.","authors":"Karen J Wernli, Eric C Haupt, Neetu Chawla, Thearis Osuji, Ernest Shen, Andrew B Smitherman, Mallory Casperson, Anne C Kirchhoff, Bradley J Zebrack, Theresa H M Keegan, Lawrence Kushi, Christopher Baggett, Heydon K Kaddas, Kathryn J Ruddy, Candice A M Sauder, Theodore Wun, Marlaine Figueroa Gray, Jessica Chubak, Hazel Nichols, Erin E Hahn","doi":"10.1089/jayao.2023.0174","DOIUrl":"10.1089/jayao.2023.0174","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Understanding emergency department (ED) use in adolescent and young adult (AYA) survivors could identify gaps in AYA survivorship. <b><i>Methods:</i></b> We conducted a cohort study of 7925 AYA survivors (aged 15-39 years at diagnosis) who were 2-5 years from diagnosis in 2006-2020 at Kaiser Permanente Southern California. We calculated ED utilization rates overall and by indication of the encounter (headache, cardiac issues, and suicide attempts). We estimated rate changes by survivorship year and patient factors associated with ED visit using a Poisson model. <b><i>Results:</i></b> Cohort was 65.4% women, 45.8% Hispanic, with mean age at diagnosis at 31.3 years. Overall, 38% of AYA survivors had ≥1 ED visit (95th percentile: 5 ED visits). Unadjusted ED rates declined from 374.2/1000 person-years (PY) in Y2 to 327.2 in Y5 (<i>p</i> change < 0.001). Unadjusted rates declined for headache, cardiac issues, and suicide attempts. Factors associated with increased ED use included: age 20-24 at diagnosis [relative risk (RR) = 1.30, 95% CI 1.09-1.56 vs. 35-39 years]; female (RR = 1.27, 95% CI 1.11-1.47 vs. male); non-Hispanic Black race/ethnicity (RR 1.64, 95% CI 1.38-1.95 vs. non-Hispanic white); comorbidity (RR = 1.34, 95% CI 1.16-1.55 for 1 and RR 1.80, 95% CI 1.40-2.30 for 2+ vs. none); and public insurance (RR = 1.99, 95% CI 1.70-2.32 vs. private). Compared with thyroid cancer, cancers associated with increased ED use were breast (RR = 1.45, 95% CI 1.24-1.70), cervical (RR = 2.18, 95% CI 1.76-2.71), colorectal (RR = 2.34, 95% CI 1.94-2.81), and sarcoma (RR = 1.39, 95% CI 1.03-1.88). <b><i>Conclusion:</i></b> ED utilization declined as time from diagnosis elapsed, but higher utilization was associated with social determinants of health and cancer types.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"738-747"},"PeriodicalIF":16.4,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11564675/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140865218","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}