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Barriers to Care and Perceived Need for Mental Health Services Among Adolescent and Emerging Adult Survivors of Pediatric Brain Tumors. 青少年和成年小儿脑肿瘤幸存者的护理障碍和对心理健康服务的认知需求。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2024-06-01 Epub Date: 2023-12-15 DOI: 10.1089/jayao.2023.0119
Allison P Fisher, Jamie Patronick, Emily L Moscato, Cynthia A Gerhardt, Amery Treble-Barna, Krestin Radonovich, Shari L Wade

Purpose: Pediatric brain tumor survivors (PBTS) commonly experience mental health challenges, which can be exacerbated during adolescence and emerging adulthood (AEA). We examined survivors and caregivers' perceived need for mental health services and barriers to receiving mental health care. Methods: Families completed surveys to assess perceived need for mental health services, socioemotional impairment, and barriers to mental health services. Survivors were between 13 and 25 years of age and were at least 5 years from diagnosis. Results: Sixty-nine caregiver-PBTS dyads participated, as well as 18 survivors and 20 caregivers who participated individually. Approximately half of survivors were male (n = 57, 52.3%), 85% (n = 93) were White, and their average age was 19.31. Most caregivers (n = 63, 70.8%) and survivors (n = 55, 63.2%) endorsed need for services for the survivors. Adolescents endorsed more barriers related to perceived helpfulness, t(18) = 2.3, p = 0.03, d = 0.54, and effects of services, t(18) = 3.8, p < 0.001, d = 0.88, than their caregivers. Emerging adults, t(34) = 2.4, p = 0.02, d = 0.41, endorsed more content barriers than their caregivers.. Discussion: Both survivors and their caregivers reported obstacles to accessing mental health services such as perceived lack of need, concerns regarding the effectiveness and usefulness of services, and limited knowledge about the content of services. Psychoeducation and psychosocial screening can support families in understanding survivors' need for mental health services.

目的:小儿脑肿瘤幸存者(PBTS)通常会遇到心理健康方面的挑战,这些挑战在青春期和成年期(AEA)可能会加剧。我们研究了幸存者和照顾者对心理健康服务的认知需求以及接受心理健康护理的障碍。研究方法幸存者家庭填写了调查问卷,以评估他们对心理健康服务的需求感知、社会情感障碍以及心理健康服务障碍。幸存者年龄在 13-25 岁之间,距离确诊至少 5 年。结果69 个照顾者-PBTS 二人组参加了调查,18 名幸存者和 20 名照顾者单独参加了调查。约半数幸存者为男性(57 人,52.3%),85%(93 人)为白人,平均年龄为 19.31 岁。大多数照顾者(n = 63,70.8%)和幸存者(n = 55,63.2%)都表示需要为幸存者提供服务。与照顾者相比,青少年在感知有用性(t(18) = 2.3,p = 0.03,d = 0.54)和服务效果(t(18) = 3.8,p d = 0.88)方面遇到的障碍更多。新兴成人(t(34) = 2.4,p = 0.02,d = 0.41)比其照顾者认可更多的内容障碍。讨论幸存者及其照护者都表示在获得心理健康服务方面存在障碍,如认为缺乏需求、担心服务的有效性和实用性以及对服务内容的了解有限。心理教育和社会心理筛查可以帮助家人了解幸存者对心理健康服务的需求。
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引用次数: 0
Knowledge and Perceptions About Cervical Cancer and Human Papillomavirus, and Relationship with E-health Literacy, and Affecting Factors Among Female University Students. 女大学生对宫颈癌和人类乳头状瘤病毒的认识和看法,以及与电子健康知识和影响因素的关系。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2024-06-01 Epub Date: 2024-02-23 DOI: 10.1089/jayao.2023.0173
Eda Kılınç İşleyen, Gülbahar Korkmaz Aslan, Asiye Kartal

Purpose: The aim of this study is to reveal female university students' knowledge and perceptions about cervical cancer (CC) and human papillomavirus (HPV), and relationship with e-health literacy (e-HL). It also aims to determine the predictors affecting CC and HPV. Methods: A cross-sectional study was conducted with 589 female university students in Türkiye. Data were collected using a "Cervical Cancer and HPV Awareness Questionnaire" and an "E-health Literacy Scale (e-HLS)." Analysis involved Pearson correlation analysis, Independent Sample t-test, one-way analysis of variance, and Linear Regression analysis. Results: Results indicate that female students exhibited a low level of knowledge and perception about CC and HPV. Only 2.90% of students reported being vaccinated, while 39.90% had sexual experience. Higher knowledge levels were observed among married individuals, those familiar with HPV and the HPV vaccine, those who had undergone Pap smear tests, sexually active individuals, and consistent condom users. e-HL had a positive impact on knowledge and perceived threat about CC and HPV. The affecting predictors for knowledge about CC and HPV were found to be e-HLS (β = 0.911), having prior knowledge of HPV (β = 0.201), and being aware of the HPV vaccine (β = 0.172). In terms of perceived threat, the affecting predictors were e-HLS (β = 0.207), having heard of HPV (β = 0.101), and having knowledge of the HPV vaccine (β = 0.092). Conclusion: e-HL emerged as a crucial predictor positively influencing knowledge and perceptions about CC and HPV. This suggests the potential for organizing digital health campaigns to enhance awareness and understanding of CC and HPV.

目的:本研究旨在揭示女大学生对宫颈癌(CC)和人类乳头瘤病毒(HPV)的了解和看法,以及与电子健康知识(e-HL)之间的关系。研究还旨在确定影响 CC 和 HPV 的预测因素。研究方法对土耳其的 589 名女大学生进行了横断面研究。使用 "宫颈癌和人乳头瘤病毒认知问卷 "和 "电子健康素养量表(e-HLS)"收集数据。分析方法包括皮尔逊相关分析、独立样本 t 检验、单因素方差分析和线性回归分析。结果显示结果表明,女生对 CC 和 HPV 的了解和认知水平较低。只有 2.90% 的学生表示已接种疫苗,而 39.90% 的学生有性经历。已婚人士、熟悉人乳头瘤病毒和人乳头瘤病毒疫苗的人士、接受过巴氏涂片检查的人士、性生活活跃的人士和一贯使用安全套的人士的知识水平较高。e-HL 对 CC 和 HPV 知识的影响预测因子为:e-HLS(β = 0.911)、对 HPV 有预先了解(β = 0.201)和了解 HPV 疫苗(β = 0.172)。在感知威胁方面,影响预测因素是电子健康生活方式(β = 0.207)、听说过 HPV(β = 0.101)和了解 HPV 疫苗(β = 0.092)。结论:e-HL 是积极影响对 CC 和 HPV 的了解和看法的重要预测因素。这表明,组织数字健康活动可以提高人们对 CC 和 HPV 的认识和了解。
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引用次数: 0
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 Q4 ONCOLOGY 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 Q4 ONCOLOGY 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 Q4 ONCOLOGY 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
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 Q4 ONCOLOGY 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
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 Q4 ONCOLOGY 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
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 1.2 4区 医学 Q4 ONCOLOGY 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
Documentation of Infertility Risk Discussion in Cancer Patients Receiving Cancer-Directed Therapy: The UC Davis Cancer Center Experience. 记录接受癌症导向疗法的癌症患者的不孕风险讨论:加州大学戴维斯分校癌症中心的经验。
IF 2 4区 医学 Q4 ONCOLOGY Pub Date : 2024-04-01 Epub Date: 2023-08-22 DOI: 10.1089/jayao.2023.0034
Colleen McCann, Natalie Kamiyama, Debra Burgess, Angela E Usher, Jeffrey Fine, Machelle Wilson, Andrea Iannucci, Gary S Leiserowitz, Marcio Malogolowkin

Purpose: A complication of cancer-directed therapy that often goes undiscussed is infertility. Although guidelines recommend addressing the possibility of infertility and fertility preservation approaches before initiating treatment, an internal review at our institution showed only 49% of female patients had infertility risk counseling documented. As a result, a fertility assessment communication was added into all oncology treatment plans to improve rates of fertility discussion and documentation. Methods: This retrospective observational study included newly diagnosed patients of childbearing potential who initiated cancer-directed therapy between January 1, 2020, and October 31, 2021. Patients who were no longer of childbearing potential due to age or surgery were excluded. Patients were divided into pre- and post-implementation groups to assess the impact of the fertility assessment communication implemented on November 1, 2020. Results: A total of 152 patients met inclusion criteria, with 80 patients in the pre-implementation group and 72 patients in the post-implementation group. The primary outcome of documentation of infertility risk discussion was 47.5% in the pre-implementation group and 86.1% in the post-implementation group (p < 0.0001). Discussion of fertility preservation options was documented in 28.7% of the pre-implementation group and 43.1% in the post-implementation group (p = 0.13). In the pre-implementation group, 5% underwent fertility preservation versus 27.8% in the post-implementation group (p = 0.0001). Of the 27 patients who received fertility preservation, 13 received hormonal therapy, 11 sperm banking, and 3 egg harvesting. Conclusion: This intervention significantly increased rates of infertility risk discussion and fertility preservation approaches received. There are opportunities to help patients receive fertility preservation, especially sperm banking and egg harvesting.

目的:癌症导向治疗的一个并发症是不孕症,但这一问题往往没有得到讨论。尽管指南建议在开始治疗前讨论不孕症的可能性和保留生育能力的方法,但本机构的一项内部审查显示,只有 49% 的女性患者有不孕症风险咨询记录。因此,我们在所有肿瘤治疗计划中加入了生育评估沟通,以提高生育讨论和记录的比例。研究方法这项回顾性观察研究纳入了 2020 年 1 月 1 日至 2021 年 10 月 31 日期间开始接受癌症导向治疗的新确诊育龄患者。因年龄或手术而不再具有生育能力的患者除外。患者被分为实施前和实施后两组,以评估 2020 年 11 月 1 日实施的生育力评估交流的影响。结果共有 152 名患者符合纳入标准,其中 80 名患者属于实施前组,72 名患者属于实施后组。不孕不育风险讨论记录的主要结果是,实施前组为 47.5%,实施后组为 86.1%(P = 0.13)。在实施前组别中,5% 的患者接受了生育力保存,而在实施后组别中,27.8% 的患者接受了生育力保存(P = 0.0001)。在接受生育力保存的 27 名患者中,13 人接受了激素治疗,11 人接受了精子库治疗,3 人接受了采卵治疗。结论这项干预措施大大提高了不孕不育风险讨论率和接受生育力保存方法的比例。有机会帮助患者接受生育力保存,尤其是精子库和卵子采集。
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引用次数: 0
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Journal of adolescent and young adult oncology
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