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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. 为应对早发乳腺癌的年轻夫妇提供社会心理护理:对未满足的服务需求及其与确诊后第一年心理困扰的关系的横断面研究。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2024-10-25 DOI: 10.1089/jayao.2024.0002
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.

目的:与年龄较大的女性和健康的同龄人相比,被诊断出患有乳腺癌的年轻女性在心理和身体方面的发病率更高。同样,年轻伴侣也会经历更多与癌症相关的痛苦。社会心理肿瘤项目并不经常关注年轻成年患者的需求,而且可能将她们的社交网络排除在外。这标志着社会心理护理服务中的一个关键缺口。本研究调查了未满足的服务需求、心理困扰以及乳腺癌确诊后第一年年轻夫妇的护理偏好。研究方法40对(n = 80)18-45岁的女性及其伴侣完成了焦虑(广泛性焦虑症-7)、抑郁(患者健康问卷-9)和服务使用问卷的测量,该问卷改编自之前发表的青少年(AYA)文献。由此产生的 25 个项目从信息、情感/支持和实际问题三个方面评估了感知到的护理需求和服务利用情况。我们计算了描述性统计、交叉表和双变量相关性。使用广义估计方程(GEE)研究了未满足需求对心理健康结果的行为者和伴侣影响。研究结果患者和伴侣都在三十岁左右,大多为非西班牙裔白人,已婚,受过高等教育,有工作。约 60% 的患者和 43%-66% 的伴侣有一项或多项服务需求未得到满足,这些需求与更大的痛苦相关。与运动、复发、营养和症状管理相关的信息需求普遍得不到满足。患者和伴侣未得到满足的支持性服务需求包括适龄计划、性健康和家庭咨询。女性报告的实际需求包括工作/学校住宿、综合护理、财务问题和医疗保险;而财务问题、医疗保险和护理需求则是伴侣的优先考虑事项。结论面对早发乳腺癌的年轻夫妇有很大一部分服务需求没有得到满足。由于缺乏与信息、支持和实际护理需求相关的、有发展针对性的社会心理计划,这些挑战变得更加严峻。当务之急是加强医疗服务提供者对影响年轻夫妇福祉的社会心理问题的了解,并实施系统性程序来检测和应对他们的困扰。
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引用次数: 0
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. 青少年和青年癌症幸存者的特征与他们使用不同社交媒体平台之间的关联:社交媒体账户观察研究》。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2024-10-22 DOI: 10.1089/jayao.2023.0159
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).

背景:青少年和年轻成人(AYA)癌症幸存者的人数不断增加,他们的需求未得到满足,这就需要创新的沟通和护理策略。本研究利用社交媒体数据来研究幸存者的人口统计和临床特征与他们使用社交媒体的关系。研究方法在 2022 年 8 月至 2023 年 3 月期间,收集了 300 名 AYA 癌症幸存者在六个社交媒体网站(YouTube、Instagram、Facebook、TikTok、Reddit、X/前 Twitter)上的数据,并使用描述性统计和统计检验(chi-square、Fisher's exact、Welch、Games-Howell post-hoc、逻辑回归)进行分析。结果不同平台的当前平均年龄(p < 0.001)和确诊年龄(p < 0.001)存在显著差异。我们还发现,所使用的社交媒体类型与当前年龄、确诊年龄、确诊后年数以及创建社交媒体账户的时间之间存在明显关联。诊断后才创建社交媒体账户的亚健康人群使用 YouTube 的可能性较低(p = 0.003),而使用 Facebook 的可能性较高(p = 0.009)。治疗完成与 X 平台的使用增加有关(p = 0.004)。样本中的非白人使用 Facebook 的可能性较低(p = 0.008)。观察到的性别与平台使用率之间存在显著关联(p < 0.001),男性更有可能使用 Reddit(p < 0.001)和 X(p < 0.001)。结论研究发现,亚青癌症幸存者的人口统计学和临床属性与他们使用的社交媒体类型之间存在显著关联,这表明针对亚青的社交媒体干预措施应根据亚组特征(如社交媒体类型、基于诊断年龄和当前年龄的发展阶段、性别)量身定制。
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引用次数: 0
The Effect of Cervical Cancer and Human Papillomavirus Vaccine Education on Vaccination Perception in University Students: A Quasi-Experimental Controlled Educational Intervention. 宫颈癌和人类乳头瘤病毒疫苗教育对大学生疫苗接种认知的影响:准实验对照教育干预。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2024-10-17 DOI: 10.1089/jayao.2024.0121
Ulku Saygili Duzova, Emine Kaplan Serin, Ayse Mutlu, Nuray Ocal, Hatice Akkus, Nebahat Toprak, Derya Ceylan

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.

目的:本研究调查了宫颈癌和人乳头瘤病毒 (HPV) 疫苗教育对大学生疫苗接种观念的影响。研究方法本研究以某大学健康服务系的在校学生为研究对象,采用前测和后测的准实验设计。研究样本包括 87 名学生(干预组 43 人,对照组 44 人)。研究数据收集于 2022 年 6 月 29 日至 7 月 22 日,使用的是介绍信息表和 HPV 信息量表。干预组接受了关于宫颈癌和人乳头瘤病毒的信息培训课程。该培训计划分两次进行。在第一节课程中,介绍了宫颈癌的发病率、病理和风险因素。在第二节课中,介绍了人乳头瘤病毒的一般信息、疫苗的详细信息以及疫苗接种计划。培训课程以小组讨论和研讨会的形式组织,涉及相关主题。结果:在我们的研究中,学生的平均年龄为(20.7 ± 2.5)岁,在两组学生中,不了解可导致宫颈癌的人乳头瘤病毒的比例相当高(74.4%、68.2%)。对照组和干预组中的大多数人都需要接受有关性传播疾病的健康教育。对照组和干预组在测试前和测试后的 HPV 知识量表得分上有显著的统计学差异(P < 0.05)。结论研究发现,宫颈癌和人乳头瘤病毒教育对学生的疫苗接种观念产生了积极影响。以互动和小组为导向的教育通过鼓励学生之间的互动来增加知识共享。通过这种方式,可以建立更广泛的宫颈癌和人乳头瘤病毒知识基础,并纠正错误信息。
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引用次数: 0
Rectal Cancer in Young Adults: A Single Center Experience. 年轻人直肠癌:单中心经验
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2024-10-17 DOI: 10.1089/jayao.2024.0090
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.

目的:40 岁以下的人只占结肠直肠癌(CRC)病例的 3%-11%。在本研究中,我们旨在回顾年轻成年人直肠癌的临床病理特征。研究方法本研究纳入了安塔利亚培训与研究医院年龄≤40 岁的直肠腺癌患者。设计了一项单臂描述性研究。研究结果共有 85 名患者参与最终分析(n = 85)。中位年龄为 37 岁(19-40 岁)。粘液腺癌和标志细胞癌的发病率分别为 11.8%。20名患者(24.4%)患有高级别癌症。14名患者(16.5%)的一级亲属中有过儿童癌症病史。没有一名患者是通过筛查确诊的。在 85 名患者中,41 人(48.2%)在确诊时处于第 3 期,23 人(27.1%)处于第 4 期。在 62 名非转移性患者中,34 人(54.8%)接受了新辅助治疗,27 人(43.5%)接受了辅助治疗,因为他们在发病前接受了前期手术。非转移性患者的 5 年无病生存率为 69.7 ± 6.5%。新发转移灶接受了化疗,并在可行的情况下使用了生物制剂。在转移性患者中,KRAS突变率为56.5%。一线治疗的中位无进展生存期为11.2个月(5.7-16.6),中位总生存期为22.3个月(15.4-29.1)。结论我们的研究表明,直肠癌通常在年轻人中被诊断为晚期,这与之前的报告一致。年轻患者及其护理人员对癌症的认识不足以及不良的组织学特征被认为是诊断延误的原因。不过,未来的研究可能会阐明晚期诊断常见的原因。
{"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}
引用次数: 0
Planned Immediate Chemotherapy and Cryopreservation of Oocytes or Embryos for Fertility Preservation in Women with Malignancies. 计划立即化疗并冷冻保存卵母细胞或胚胎,以保存恶性肿瘤妇女的生育能力。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2024-10-08 DOI: 10.1089/jayao.2023.0180
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.

目的:性腺毒性治疗前的卵母细胞和胚胎冷冻保存是提高活产可能性的成熟方法。尽管研究发现,一些社会人口学因素与接受生育力保存(FP)治疗有关,但对计划立即进行化疗等临床特征的调查并不充分。我们的目的是在调整其他临床特征的基础上,研究计划中的即刻化疗是否与接受卵母细胞/胚胎冷冻以进行生育力保存的决定有关。研究方法这项机构队列研究纳入了 491 名年龄在 19 岁或以上的绝经前妇女,她们在 2006 年至 2019 年期间前往一家三级医疗中心的 FP 诊所就诊。主要结果是参与者是否进行了卵母细胞/胚胎冷冻保存。我们使用单变量和多变量逻辑回归评估了根据是否计划立即化疗进行卵母细胞/胚胎冷冻保存的几率比(ORs)和相应的 95% 置信区间(CIs)。结果显示在单变量逻辑回归分析中,计划立即接受化疗的女性接受卵母细胞/胚胎冷冻保存的可能性远低于未计划立即接受化疗的女性(OR = 0.46,95% CI 0.27-0.76)。在对婚姻状况、恶性肿瘤类型和日历年期间等协变量进行调整后,计划立即接受化疗的女性接受卵母细胞/胚胎冷冻保存的可能性仍然低于未计划立即接受化疗的女性(OR = 0.31,95% CI:0.17-0.56)。恶性肿瘤类型不同,相关性也不同(交互作用 p = 0.13)。在乳腺癌方面,与未计划立即接受化疗的女性相比,计划立即接受化疗的女性接受卵母细胞/胚胎冷冻保存的 OR 值较低 (OR = 0.25,95% CI:0.12-0.53)。结论本研究表明,计划立即接受化疗与接受卵母细胞/胚胎冷冻保存呈负相关。这一信息对 FP 咨询很有帮助。
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引用次数: 0
Body Image Concerns in Adolescent and Young Adult Oncology Patients within Six Months of Upfront Diagnosis. 青少年和年轻成人肿瘤患者在确诊后六个月内对身体形象的担忧。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2024-10-01 Epub Date: 2024-05-29 DOI: 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.

这项横断面研究描述了在一家四级儿童医院接受治疗的患有肿瘤的青少年和年轻成人普遍关注的身体形象(BI)问题。32 名年龄在 15-39 岁之间的青少年完成了调查问卷,对确诊后 6 个月内的身体形象进行了评估。最常赞同的问卷项目包括:希望增强体质(62.5%)、对头发的自我意识(45.2%)、对体重不满意(40.6%)、缺乏力量(37.5%)、穿宽松的衣服隐藏自己的身体(37.5%)、灵活性下降(34.4%)、对体形不满意(32.2%)以及自我感觉身体脂肪过多(31.3%)。在治疗过程中了解青壮年对身体健康的关注,可以针对这一复杂问题进行早期干预。
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引用次数: 0
Asking the "Right" Questions about Financial Hardship: Using Cognitive Interviews with Adolescents and Young Adults with Cancer and Their Caregivers to Inform Measure Development. 提出有关经济困难的 "正确 "问题:利用对青少年和年轻成人癌症患者及其照顾者的认知访谈来指导测量方法的开发。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2024-10-01 Epub Date: 2024-07-03 DOI: 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.

目的癌症治疗导致的经济困难会对青少年及其家庭产生重大而持久的负面影响。为了解决缺乏针对青少年和他们的照顾者的经济困难的发展信息和心理测量方法的问题,我们采用了美国国立卫生研究院的患者报告结果测量信息系统 (Patient-Reported Outcomes Measurement Information System®, PROMIS®) 推荐的严格的测量开发方法,以确定测量内容的可理解性和相关性。方法:我们的多步骤方法包括项目识别、改进和生成;可翻译性和阅读水平审查;以及认知访谈。25名青少年和10名护理人员参加了有目的的抽样调查,确保了不同年龄、教育程度、性别、种族/民族和癌症类型的代表性。结果:在经济困难的物质、社会心理和行为子域中,开发了 50 个由患者和护理人员报告的项目。通过对可翻译性和阅读水平的审查,对患者报告的 22 个项目和护理人员报告的 25 个项目进行了改写。88%的患者和所有护理人员都认为这些项目易于回答。年轻的青壮年(15 至 25 岁)更有可能认为这些项目与他们的相关性较低。建议对病人报告的 46 个项目和护理人员报告的 48 个项目进行进一步测试。结论:本研究首次采用深入的定性方法,以老年青壮年患者和护理人员的经验为中心,创建了新的经济困难测量方法。数据支持了这些初步项目库的可理解性和内容有效性。未来的大规模定量测试将进一步完善这些项目库,并支持使用简表和计算机自适应测试对不同的亚裔患者及其护理人员样本进行测试。
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引用次数: 0
Perspectives of Health Care Providers on Peer Support for Adolescents with Cancer in Pediatrics. 医护人员对儿科癌症青少年同伴支持的看法。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2024-10-01 Epub Date: 2024-03-22 DOI: 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.

医疗保健提供者(HCPs)在癌症青少年(AWC)的社会心理治疗中扮演着重要角色,并提出了独特的观点。这项前瞻性研究包括一项简短的调查和一次访谈,旨在了解医护人员对癌症青少年同伴支持需求的看法。参与者是 10 名具有 5-30 年工作经验的多学科保健医生。调查发现的三个关键主题是:观察到的情况以及与 AWC 的关系;提供支持所面临的挑战;潜在的同伴支持干预措施。保健医生希望提供同伴支持资源,但缺乏足够的信息。下一步措施:干预措施应包括向所有护理 AWC 的 HCP 传播信息。
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引用次数: 0
Clinical Practice Guideline-Inconsistent Management of Fertility Preservation in Pediatric Cancer Patients in Community Settings: A Children's Oncology Group Study. 社区儿童癌症患者生育力保护的临床实践指南管理不一致:儿童肿瘤学小组的一项研究。
IF 16.4 4区 医学 Q4 ONCOLOGY Pub Date : 2024-10-01 Epub Date: 2024-05-21 DOI: 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.

背景:研究的主要目的是衡量美国国立癌症研究所社区肿瘤学研究项目(NCORP)研究机构中接受治疗的儿科癌症患者对临床实践指南(CPG)中有关生育力保存(FP)建议的遵守情况。次要目标是描述与 CPG 不一致的护理提供和冷冻保存完成情况相关的因素,如研究机构的规模。方法:这项回顾性多中心研究纳入了 2014 年 1 月至 2015 年 12 月期间首次确诊癌症的 15 至 21 岁患者,这些患者之前参加了儿童肿瘤组织 (COG) 的一项研究,并在参与 NCORP 的研究机构接受了治疗。患者从 COG 生成的名单中随机抽取,供参与研究的研究机构进行病历审查。主要结果是护理服务与CPG关于FP的强烈建议(即在癌症治疗开始前讨论并提供FP选择)不一致,由一个小组集中裁定。结果:共纳入了来自 25 个医疗点的 129 名患者。其中,48%(62/129)的患者接受了与 CPG 不一致的治疗。大多数不符合 CPG 的护理是由于缺乏 FP 讨论记录(93.5%,58/62)。医疗点规模小、在儿科(与成人/儿科混合)医疗点进行治疗以及女性性别与提供 CPG 不一致护理的几率较高有关。结论:新诊断的儿科癌症患者通常会接受与 CPG 不一致的 FP 护理,其中女性患者和在较小或儿科 NCORP 治疗点接受治疗的患者接受的护理差距更大。CPG护理不一致的主要原因是临床医生缺乏对FP的讨论。本文强调了改进 FP CPG 实施的机会。
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引用次数: 0
Emergency Department Use in Adolescent and Young Adult Cancer Early Survivors from 2006 to 2020. 2006 至 2020 年青少年和青年癌症早期幸存者使用急诊室的情况。
IF 16.4 4区 医学 Q4 ONCOLOGY Pub Date : 2024-10-01 Epub Date: 2024-04-29 DOI: 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。
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引用次数: 0
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Journal of adolescent and young adult oncology
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