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Perceptions of Infertility and Reproductive Concerns in Adolescent and Young Adult Female Cancer Survivors. 青少年和年轻成年女性癌症幸存者对不孕症和生殖问题的看法。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2024-06-01 Epub Date: 2024-03-06 DOI: 10.1089/jayao.2023.0138
Anna Zeidman, Alexandra M Davis, Jennifer S Ford, Michael Diefenbach, Catherine Benedict

This cross-sectional survey study explores the fertility perceptions of adolescent and young adult female cancer survivors (n = 111) and relationships to fertility counseling and reproductive distress. Satisfaction with post-treatment fertility counseling (β = -0.20, p = 0.04), perceived consequences of cancer-related fertility changes (β = 0.26, p = 0.03), and understanding of one's reproductive health (β = -0.22, p = 0.03) correlated with reproductive distress, controlling for covariates (F(10, 88) = 3.50, p < 0.001). Findings suggest that post-treatment counseling may be important to addressing survivors' perceptions of fertility and reproductive potential, which influences levels of distress and to create a greater sense of control on their road to parenthood.

这项横断面调查研究探讨了青少年和年轻成年女性癌症幸存者(n = 111)的生育观念以及与生育咨询和生殖困扰之间的关系。对治疗后生育咨询的满意度(β = -0.20,p = 0.04)、对癌症相关生育变化后果的感知(β = 0.26,p = 0.03)以及对自身生殖健康的了解(β = -0.22,p = 0.03)与生殖困扰相关,控制协变量(F(10, 88) = 3.50,p = 0.04)。
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引用次数: 0
Reel Resilience: Unveiling the Potential Role of Entertainment Media Narratives in Improving Psychological Well-Being Among Adolescent and Young Adult Cancer Survivors. 卷轴弹性:揭示娱乐媒体叙事在改善青少年和青年癌症幸存者心理健康方面的潜在作用。
IF 1.2 4区 医学 Q2 Medicine Pub Date : 2024-06-01 Epub Date: 2023-11-29 DOI: 10.1089/jayao.2023.0114
Meredith K Reffner Collins
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引用次数: 0
Medical Trainee Education and Advocacy Regarding Sexual Health and Oncofertility: Gaps and Opportunities. 关于性健康和肿瘤生育的医学培训生教育和宣传:差距与机遇。
IF 1.2 4区 医学 Q2 Medicine Pub Date : 2024-06-01 Epub Date: 2024-01-30 DOI: 10.1089/jayao.2023.0135
Mariah L Wright-Nadkarni, Leena Nahata, Anthony N Audino
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引用次数: 0
A Scoping Review of Oncosexology Policy and Practice Tools Focused on Adolescents and Young Adults. 以青少年为重点的肿瘤学政策和实践工具范围审查。
IF 1.2 4区 医学 Q2 Medicine Pub Date : 2024-06-01 Epub Date: 2024-04-02 DOI: 10.1089/jayao.2023.0145
Kexin Sun, Nhu Thao Dinh, Jeremy Lewin, Luke Grzeskowiak, Chiara Mariano, Eliza Bailey, Smaro Lazarakis, Safeera Y Hussainy

Background: Despite being considered a key component of quality-of-life, sexual health concerns in adolescents and young adults (AYA) patients with cancer (aged 15-39 years old) are often unmet due to barriers from both patients and health care professionals (HCPs). Investigation into policy and practice tools in this scope of practice is also limited. Aim: To review the literature on policy and practice tools in AYA oncosexology. Method: A scoping review was conducted using four databases: Medline, EMCARE, EMBASE, and PsycINFO, based on the Joanna Briggs Institute Scoping Review methodology. Retrieved articles were extracted into Covidence, followed by two screening rounds. Descriptive and basic content analyses were performed for evidence synthesis. Results: Seventy-four articles were included after screening rounds and citation searches. Overall, oncosexology policy and practice tools were categorized into screening tools (11 articles), guidelines (38 articles), training programs (15 articles), service delivery initiatives (5 articles), and the evaluation of their feasibility/challenges to implementation (5 articles). Among these, only ten articles were specifically about the AYA population. They helped identify and resolve sexual health concerns in AYA patients with cancer by providing strategies to overcome communication barriers, treatment options, and information resources for patients, and by advocating for more HCP education on this topic. Conclusion: The results warrant the need for more research, implementation and expansion of policy and practice tools for sexual health issues in AYA patients with cancer.

背景:青少年和年轻成人癌症患者(15-39 岁)的性健康问题被认为是生活质量的一个重要组成部分,但由于患者和医疗保健专业人员(HCPs)方面的障碍,青少年和年轻成人癌症患者的性健康问题往往得不到解决。对这一实践范围内的政策和实践工具的调查也很有限。目的:回顾有关青少年性病学政策和实践工具的文献。方法使用四个数据库进行了范围审查:Medline、EMCARE、EMBASE 和 PsycINFO。检索到的文章被提取到 Covidence 中,然后进行两轮筛选。对证据综合进行描述性分析和基本内容分析。结果经过一轮筛选和引文检索,共纳入 74 篇文章。总体而言,性病学政策和实践工具分为筛查工具(11 篇)、指南(38 篇)、培训计划(15 篇)、服务提供计划(5 篇)以及可行性评估/实施挑战(5 篇)。在这些文章中,只有 10 篇是专门针对青少年群体的。这些文章通过提供克服沟通障碍的策略、治疗方案和患者信息资源,以及倡导开展更多有关这一主题的保健医生教育,帮助确定和解决了青少年癌症患者的性健康问题。结论研究结果证明,有必要针对青少年癌症患者的性健康问题开展更多研究,实施并推广相关政策和实践工具。
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引用次数: 0
Ovarian Insufficiency and Fertility Preservation During and After Childhood Cancer Treatment. 儿童癌症治疗期间和之后的卵巢功能不全和生育力保护。
IF 1.2 4区 医学 Q2 Medicine Pub Date : 2024-06-01 Epub Date: 2024-01-24 DOI: 10.1089/jayao.2023.0111
Kayla L Foster, Danielle J Lee, Selma F Witchel, Catherine M Gordon

Premature ovarian insufficiency (POI) is one of many potential long-term consequences of childhood cancer treatment in females. Causes of POI in this patient population can include chemotherapy, especially alkylating agents, and radiation therapy. Rarely, ovarian tumors lead to ovarian dysfunction. POI can manifest as delayed pubertal development, irregular menses or amenorrhea, and infertility. This diagnosis often negatively impacts emotional health due to the implications of impaired ovarian function after already enduring treatment for a primary malignancy. The emerging adult may be challenged by the impact on energy level, quality of life, and fertility potential. POI can also lead to low bone density and compromised skeletal strength. This review discusses the health consequences of POI in childhood cancer survivors (CCS). We also explore the role of fertility preservation for CCS, including ovarian tissue cryopreservation and other available options. Lastly, knowledge gaps are identified that will drive a future research agenda.

早发性卵巢功能不全(POI)是女性儿童癌症治疗的众多潜在长期后果之一。导致这类患者出现卵巢功能不全的原因包括化疗(尤其是烷化剂)和放疗。卵巢肿瘤导致卵巢功能障碍的情况较为罕见。POI 可表现为青春期发育延迟、月经不调或闭经以及不孕。在接受原发性恶性肿瘤治疗后,由于卵巢功能受损的影响,这种诊断往往会对患者的情绪健康产生负面影响。新近成年的患者可能会因精力水平、生活质量和生育能力受到影响而面临挑战。POI 还可能导致低骨密度和骨骼强度受损。本综述讨论了儿童癌症幸存者(CCS)POI 对健康的影响。我们还探讨了保留生育力对儿童癌症幸存者的作用,包括卵巢组织冷冻和其他可选方案。最后,我们确定了知识差距,这将推动未来的研究议程。
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引用次数: 0
Survey of Transitional Care Between Pediatrics and Obstetrics/Gynecology in Japan. 日本儿科与妇产科过渡护理调查。
IF 1.2 4区 医学 Q2 Medicine Pub Date : 2024-06-01 Epub Date: 2024-02-27 DOI: 10.1089/jayao.2023.0017
Kentaro Nakamura, Yukayo Terashita, Atsushi Manabe, Nao Suzuki

Purpose: This study's aim was to determine the actual status of transitional care for patients with pediatric cancer (PPCs) in Japan by surveying obstetricians/gynecologists. Methods: A questionnaire survey on transitional medicine was conducted in the form of an online questionnaire at 579 major training facilities nationwide, which were registered with the Japanese Society of Obstetrics and Gynecology. Results: While 40% of the facilities had received referrals for PPCs, only 13% provided transitional care specifically for PPCs. The most common problems with referrals were related to "insufficient explanation." In addition, at facilities with no experience treating PPCs, many respondents commented that they did not know how to follow the progression of the disease. Regarding the necessity of obstetrics/gynecology visits for PPCs, more than half of the respondents at facilities with experience treating PPCs answered that such visits were "necessary"; only 1% answered that they were "unnecessary." On the other hand, 37% of the facilities that had no experience treating PPCs answered that it was "necessary," whereas 4% answered that it was "unnecessary." Conclusions: This survey of the actual status of transitional care between pediatrics and obstetrics/gynecology in Japan identified issues to be addressed for the spread of transitional care. The results suggest that, in the future, health care professionals need education to increase their knowledge, and that patient education that leads to patients' awareness of their own self-management is necessary.

目的:本研究旨在通过对妇产科医生进行调查,了解日本儿科癌症患者(PPCs)过渡性护理的实际情况。方法:对日本的妇产科医生进行有关过渡性医疗的问卷调查:在日本妇产科学会注册的全国 579 家主要培训机构中,以在线问卷的形式进行了有关过渡性医疗的问卷调查。结果显示虽然有 40% 的培训机构接受过产前综合症患者的转诊,但只有 13% 的培训机构专门为产前综合症患者提供过渡性医疗服务。转诊中最常见的问题与 "解释不充分 "有关。此外,在没有治疗 PPC 经验的医疗机构中,许多受访者表示他们不知道如何跟踪疾病的进展。关于 PPC 妇产科就诊的必要性,在有治疗 PPC 经验的医疗机构中,超过半数的受访者回答 "有必要",只有 1%的受访者回答 "没有必要"。另一方面,在没有治疗 PPC 经验的医疗机构中,37% 的受访者回答 "有必要",而 4% 的受访者回答 "没有必要"。结论:这项针对日本儿科和妇产科之间过渡性护理实际状况的调查发现了过渡性护理推广过程中需要解决的问题。调查结果表明,今后需要对医护人员进行教育,以提高他们的知识水平,同时也需要对患者进行教育,使患者认识到自我管理的重要性。
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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 2 4区 医学 Q2 Medicine Pub 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
Evaluation of the Cancer Awareness Measure in Adolescents in Turkiye: A Methodological Study. 对土耳其青少年癌症意识测量的评估:方法论研究
IF 2 4区 医学 Q2 Medicine Pub Date : 2024-05-28 DOI: 10.1089/jayao.2024.0005
Şeyma Zeybek, Şeyda Özbiçakçi

Purpose: Cancer awareness can help reduce the associated morbidity and mortality. There is no scale for the assessment of general cancer awareness in Turkiye. This study aimed to evaluate the cultural relevance and psychometric properties of the cancer awareness measure (CAM) for use in adolescents in the Turkish population. Methods: This methodological study included 400 students attending seven high schools in western Turkiye, recruited by convenience sampling. The CAM was translated into Turkish and assessed for content validity by expert panel opinion and content validity index (CVI). The Turkish CAM was administered online, and its reliability was assessed using Cronbach's alpha coefficients, item-total and item-subscale correlation coefficients, and test-retest analysis. Results: The Turkish CAM had excellent content validity (scale CVI = 0.99). Cronbach's alpha for the entire scale was 0.72, and item-subscale correlation coefficients were 0.33-.75 (p < 0.001). Test-retest reliability was good, with an intraclass correlation coefficient of 0.83 for the entire scale (p < 0.001). The students' mean score on the Turkish CAM was 45.60 ± 7.23 (on a scale of 11-77), indicating moderate cancer awareness. Conclusion: The Turkish CAM is a valid and reliable measure that can be used to assess cancer awareness in adolescents in Turkiye. Interventional studies should be performed to measure and increase cancer awareness and promote cancer prevention among young people.

目的:对癌症的认识有助于降低相关的发病率和死亡率。目前在土耳其还没有用于评估癌症常识的量表。本研究旨在评估癌症认知量表(CAM)在土耳其青少年人群中的文化相关性和心理测量特性。研究方法:这项方法学研究通过便利抽样的方式招募了土耳其西部七所高中的 400 名学生。CAM 已被翻译成土耳其语,并通过专家小组意见和内容效度指数 (CVI) 进行了内容效度评估。土耳其语 CAM 采用在线施测,并使用 Cronbach's alpha 系数、项目总相关系数和项目分量表相关系数以及测试-再测分析对其可靠性进行了评估。结果显示土耳其 CAM 具有良好的内容效度(量表 CVI = 0.99)。整个量表的 Cronbach's alpha 为 0.72,项目-子量表相关系数为 0.33-.75(p < 0.001)。测试-重测信度良好,整个量表的类内相关系数为 0.83(p < 0.001)。学生在土耳其语 CAM 中的平均得分为 45.60 ± 7.23(11-77 分),表明其癌症意识处于中等水平。结论土耳其 CAM 是一种有效、可靠的测量方法,可用于评估土耳其青少年的癌症意识。应开展干预性研究,以衡量和提高青少年对癌症的认识,并促进癌症预防工作。
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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 2 4区 医学 Q2 Medicine Pub 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
"The Most Important Thing is That You Are Not Left Alone"-A Qualitative Study of Challenges and Needs of Adolescents and Young Adults with Cancer. "最重要的是你不会孤单"--关于青少年癌症患者的挑战和需求的定性研究。
IF 2 4区 医学 Q2 Medicine Pub Date : 2024-05-21 DOI: 10.1089/jayao.2023.0158
Carolin Wilharm, Anne Pralong, Mara Weiß, Saskia Blütgen, Michael Hallek, Raymond Voltz, Steffen T Simon, Armin Tuchscherer

Purpose: We aimed to gain in-depth insights into the challenges and needs of adolescents and young adults with cancer (AYA) throughout their disease to detect increased needs for support. Methods: We conducted face-to-face interviews with 15 patients 18-39 years old at the time of diagnosis of malignancies who had completed treatment at the time of the interview. The interviews were analyzed using content analysis. Results: The unexpected diagnosis of a serious illness shocked the participants, especially since many were in a life phase of transition at that time and had little knowledge about cancer and its therapy. They reported feelings of helplessness, unfairness, and insecurity triggered by side effects, divergent information from health care professionals (HCPs), or lack of information. After the end of the therapy, many AYAs were challenged by prolonged changes in their lives since they gained strength from the hope of returning to "the life before." The primary needs were social and psychological support, connecting with peers, orientation, and guidance. Conclusion: AYAs face special challenges requiring support and guidance from HCPs that should extend beyond the end of the therapy. There is a need for exchange opportunities with other AYAs. Trial Registration Number: DRKS00030277 (German Clinical Trials Register); September 27, 2022.

目的:我们旨在深入了解青少年癌症患者(AYA)在整个患病期间所面临的挑战和需求,以发现他们对支持的更多需求。方法我们对 15 名确诊为恶性肿瘤时年龄在 18-39 岁之间、在访谈时已完成治疗的患者进行了面对面访谈。我们采用内容分析法对访谈内容进行了分析。结果突如其来的重病诊断令参与者感到震惊,尤其是许多人当时正处于人生转型期,对癌症及其治疗知之甚少。他们表示,副作用、医护人员(HCPs)提供的不同信息或信息匮乏引发了无助感、不公平感和不安全感。治疗结束后,许多青壮年患者因希望回到 "以前的生活 "而获得了力量,但他们的生活却面临着长期变化的挑战。他们的主要需求是社会和心理支持、与同伴的联系、定位和指导。结论青壮年患者面临着特殊的挑战,需要保健医生在治疗结束后提供支持和指导。有必要提供与其他亚健康人群交流的机会。试验注册号:DRKS00030277(德国临床试验注册);2022 年 9 月 27 日。
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引用次数: 0
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Journal of adolescent and young adult oncology
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