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Assessing Attitudes and Understanding After Ovarian Tissue Cryopreservation: A Follow-Up Telephone Interview Survey. 评估卵巢组织冷冻保存后的态度和理解:后续电话访谈调查
IF 2 4区 医学 Q2 Medicine Pub Date : 2024-04-08 DOI: 10.1089/jayao.2023.0148
Alexandra Piselli, Jacqueline C Yano, Veronica Gomez-Lobo
Purpose: Assessing patient and guardian experiences regarding their history of ovarian tissue cryopreservation (OTC) years after initial procedure. Methods: Cross-sectional follow-up telephone survey. A questionnaire developed by The Pediatric Initiative Network of the Oncofertility Consortium, modified to assess intent and attitudes regarding OTC, tissue access knowledge, financial burden of tissue storage, and intent to use tissue, was utilized. Interviews were conducted for those who underwent OTC at a metropolitan children's hospital between 2013 and 2022. Results: Of 60 eligible patients, 39 interviews were completed. Contacted patients were 3-28 years old, with minors accompanied by guardians. Average age at OTC was 8.5 years old, and 5.1% (2/39) were deceased at the time of contact. All interviewees underwent OTC for fertility preservation before gonadotoxic treatment. Seventy percent of patients (7/10) and 48.1% (13/27) of guardians stated they would use frozen tissue for pregnancy, with 50% (5/10) of patients and 59.3% (16/27) of guardians not understanding tissue access. Regret occurred in 10% (1/10) of patients and 3.4% (1/29) of guardians. It was associated with 10.8% (4/37) of tissue discard due to failed storage payments. Financial concerns occurred in 29.7% (11/37) of interviewees. Overall, 92.3% (36/39) would recommend OTC, and 94.9% (37/39) would repeat their choice to undergo OTC. Conclusion: Follow-up after OTC is essential to patient understanding of tissue status, access, and payments. Most do not regret OTC, except in cases of financial burden leading to tissue discard. Follow-up should be sequentially scheduled and include counseling on financial assistance programs.
目的:评估患者和监护人在初次卵巢组织冷冻保存(OTC)术后数年的经历。方法:横断面随访电话调查:横断面随访电话调查。采用由肿瘤不孕症联盟儿科倡议网络(The Pediatric Initiative Network of the Oncofertility Consortium)编制的调查问卷,并对其进行修改,以评估患者对 OTC 的意向和态度、组织获取知识、组织储存的经济负担以及使用组织的意向。访谈对象为 2013 年至 2022 年期间在一家大都市儿童医院接受过 OTC 的患者。结果:在 60 名符合条件的患者中,有 39 人完成了访谈。受访患者的年龄在 3-28 岁之间,其中未成年人由监护人陪同。接受 OTC 时的平均年龄为 8.5 岁,5.1%(2/39)的受访者在联系时已经去世。所有受访者都是在接受性腺毒性治疗前为保留生育力而进行的体外受精。70%的患者(7/10)和48.1%的监护人(13/27)表示会使用冷冻组织怀孕,50%的患者(5/10)和59.3%的监护人(16/27)不了解组织获取途径。10%(1/10)的患者和 3.4%(1/29)的监护人表示后悔。10.8%(4/37)的患者和 3.4%(1/29)的监护人因无法支付储存费用而丢弃组织。29.7%(11/37)的受访者存在经济问题。总体而言,92.3%(36/39)的受访者会推荐进行 OTC,94.9%(37/39)的受访者会再次选择进行 OTC。结论:OTC 后的随访对患者了解组织状态、获取途径和支付方式至关重要。除了因经济负担导致组织丢弃的情况外,大多数患者都不会后悔接受 OTC。随访应按顺序安排,并包括有关经济援助计划的咨询。
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引用次数: 0
Long-Term Survival in an Adolescent and Young Adult with Metastatic Relapse of an Undifferentiated Embryonal Sarcoma of the Liver. 肝脏未分化胚胎性肉瘤转移复发的青少年患者的长期存活率
IF 2 4区 医学 Q2 Medicine Pub Date : 2024-04-05 DOI: 10.1089/jayao.2023.0105
Thi Thao Vi Luong, Catherine Mitchell, Julie Lokan, Jessica Ng, Jeremy Lewin
Undifferentiated embryonal sarcoma of the liver (UESL) is an extremely rare and aggressive malignancy in adults.1 Adults with UESL have a worse prognosis compared to pediatric population.2 Due to the rarity of this disease in adults, there has been a lack of information that assists in treatment decisions within this group. Improved understanding of UESL in adults might assist in understanding biological differences compared to pediatric cohorts as well as tailor treatments to improve their overall outcome. We described the management and outcome of a young adult managed at our center with metastatic relapsed UESL. For comparison, a PubMed search for adolescent and young adult (AYA) and adults with UESL was performed with the aim to review and address any distinct clinical features, different aspects of management and survival outcomes within this population. A 21-year-old male underwent right hepatectomy for a large 16 cm localized UESL with clear surgical margin and did not receive adjuvant chemotherapy. Seven months postsurgery, he relapsed with both local and metastatic disease and underwent chemotherapy with vincristine, doxorubicin, cyclophosphamide alternating with ifosfamide and etoposide achieving a complete metabolic response. This was followed by Stereotactic Ablative Radiation Therapy and surgical resection of residual disease. He remains free of disease 3 years since his diagnosis. We subsequently reviewed 42 AYA and adults (aged >15) with UESL (median age, 33 years) between 1991 and 2022. Most patients presented with localized UESL and for those treated with surgery alone, 67% developed recurrences. Those receiving multimodality treatment, better outcomes, and reduced relapse rate was achieved. Twenty-seven patients developed recurrences, 13 with local recurrences and 14 with metastatic relapse. The median time to relapse was 12 months. We reported a successful outcome in multimodality treatment which resulted in long remission in a young adult with relapsed UESL. Combination of perioperative chemotherapy with locoregional treatment is important to improve long-term survival in adults with metastatic UESL.
肝未分化胚胎性肉瘤(UESL)是成人中一种极为罕见的侵袭性恶性肿瘤1 。加深对成人 UESL 的了解可能有助于了解该病与儿科疾病的生物学差异,并为改善其总体预后量身定制治疗方案。我们描述了本中心对一名患有转移性复发性 UESL 的年轻成人的管理和治疗结果。为了进行比较,我们在PubMed上搜索了青少年和年轻成人(AYA)以及成人UESL患者,目的是回顾和探讨这一人群中任何不同的临床特征、管理的不同方面以及生存结果。一名 21 岁的男性因 16 厘米大的局部 UESL 而接受了右肝切除术,手术切缘清晰,未接受辅助化疗。术后七个月,他的局部和转移性疾病复发,接受了长春新碱、多柔比星、环磷酰胺与伊佛酰胺和依托泊苷交替使用的化疗,取得了完全代谢反应。随后,他接受了立体定向消融放疗和残余病灶的手术切除。确诊 3 年后,他仍未患病。随后,我们回顾了 1991 年至 2022 年间 42 名青壮年和成人(年龄大于 15 岁)尿道上皮癌患者(中位年龄 33 岁)的病史。大多数患者表现为局部 UESL,在仅接受手术治疗的患者中,67% 出现复发。接受多模式治疗的患者疗效更好,复发率也有所降低。27例患者复发,其中13例为局部复发,14例为转移性复发。复发的中位时间为 12 个月。我们报告了一个多模式治疗的成功案例,它使一名复发的年轻成人 UESL 患者获得了长期缓解。围手术期化疗与局部治疗相结合对于提高转移性上皮内瘤变成人患者的长期生存率非常重要。
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引用次数: 0
Reproductive Concerns and Associated Factors Among Adolescent and Young Adult Cancer Survivors in Uganda: A Hospital-Based Cross-Sectional Study. 乌干达青少年癌症幸存者的生殖问题及相关因素:一项基于医院的横断面研究。
IF 2 4区 医学 Q2 Medicine Pub Date : 2024-04-05 DOI: 10.1089/jayao.2023.0184
Richard Nyeko, Nelson Okello, Christine Joy Abeja, Proscovia Adyanga, Betty Apio, C. Nabasirye, Pamella Aol Mwa, R. Angom, F. Geriga, Julie Buser
Purpose: Reproductive health (RH) is a critical issue among cancer survivors worldwide. However, in developing countries where RH services for patients with cancer are often lacking, reproductive concerns among adolescent and young adult (AYA) survivors remain uncertain. In this study, we assessed the reproductive concerns of AYA cancer survivors in a resource-limited context of Uganda. Methods: We collected data from AYA cancer survivors at two facilities in Uganda using an interviewer-administered questionnaire. Descriptive statistics were calculated, one-way analysis of variance was used for intergroup comparisons, and multiple regressions were used to test for predictors of reproductive concerns. Results: A total of 110 AYA cancer survivors, with a median age of 20 years (interquartile range [IQR], 18-22), were interviewed. More than half (53.6%) of the respondents were males. The median time since cancer diagnosis was 19 months (IQR, 13.0-35.0). Almost all (91.8%) respondents had a future desire to have children, but only 15.5% received reproductive counseling. The mean total score for the reproductive concern subscales was highest for the fertility concern, followed by the information-seeking and health-related concerns. Reproductive counseling, desire to have children, and respondents' age were the factors influencing reproductive concern. Conclusions: The study shows a strong desire for biological parenthood with very low reproductive counseling among AYA cancer survivors, who remain concerned about their fertility, information needs, and health. This outcome underscores the need to integrate RH services into resource-limited cancer care settings.
目的生殖健康(RH)是全球癌症幸存者面临的一个重要问题。然而,在发展中国家,癌症患者往往缺乏生殖健康服务,因此青少年癌症幸存者对生殖健康的关注仍不确定。在这项研究中,我们评估了乌干达资源有限的环境中青少年癌症幸存者对生殖问题的关注。研究方法我们在乌干达的两家医疗机构使用访谈者发放的调查问卷收集了青少年癌症幸存者的数据。我们计算了描述性统计数字,采用单因素方差分析进行组间比较,并采用多元回归检验生殖问题的预测因素。结果共访问了 110 名中青年癌症幸存者,中位年龄为 20 岁(四分位数间距 [IQR],18-22 岁)。一半以上(53.6%)的受访者为男性。癌症确诊后的中位时间为 19 个月(IQR,13.0-35.0)。几乎所有受访者(91.8%)都有生育意愿,但只有 15.5%的受访者接受过生殖咨询。生育问题分量表的平均总分最高的是生育问题,其次是信息寻求和健康相关问题。生殖咨询、生育意愿和受访者的年龄是影响生殖担忧的因素。结论研究表明,老年癌症幸存者对生儿育女有着强烈的愿望,但生殖咨询率却很低,他们仍然对自己的生育能力、信息需求和健康状况感到担忧。这一结果凸显了将生殖健康服务纳入资源有限的癌症护理环境的必要性。
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引用次数: 0
Standardized Reproductive Endocrinology and Infertility Consultation for Pediatric and Adolescent Oncology Patients. 为儿童和青少年肿瘤患者提供标准化生殖内分泌和不孕症咨询。
IF 2 4区 医学 Q2 Medicine Pub Date : 2024-04-05 DOI: 10.1089/jayao.2024.0009
Lindsay A Hartup, Virginia-Arlene Go, Randal D Robinson
Purpose: To investigate the role of formal reproductive endocrinology and infertility (REI) consultation in fertility preservation counseling in a pediatric/adolescent oncology patient population. Methods: Retrospective chart review was performed at an academic adult hospital from 2021 to 2022. Pre- and postpubertal patients admitted to the pediatric/adolescent oncology service with cancer diagnoses and imminent gonadotoxic chemotherapy plans were included. Baseline characteristics were collected, including patient age, sex, race, language, insurance, and cancer diagnosis. Primary outcomes were formal REI consultation and fertility preservation election. Results: Nineteen of 58 eligible patients received a formal REI consultation. Patients were more likely to elect fertility preservation if they received a consult. Females were more likely to receive a consult than males and more likely to elect fertility preservation. Patients of age ≥16 years were more likely to receive consultation than younger patients. However, all patients of age <16 years who received a consult elected fertility preservation. There was no difference in consultation based on race, language, or insurance. Thirteen of 19 patients who received an REI consultation elected fertility preservation. Ten of 11 female elections were ovarian suppression, an unproven method of fertility preservation. The two male elections were semen cryopreservation. Conclusion: Underutilization of formal REI consults and a relative lack of proven fertility preservation elections may shed light on a need for increased fertility preservation awareness among young oncology patients and the providers who care for them. A streamlined process that automates formal REI consultation for all eligible patients may maximize the potential for comprehensive counseling and improve patient participation in fertility preservation.
目的:研究正规生殖内分泌与不孕症(REI)咨询在儿科/青少年肿瘤患者生育力保存咨询中的作用。方法:在儿童/青少年肿瘤患者中开展回顾性病历审查:2021 年至 2022 年期间,在一家学术性成人医院进行了回顾性病历审查。研究对象包括在儿科/青少年肿瘤科就诊的青春期前和青春期后、确诊为癌症且即将接受性腺毒性化疗的患者。收集的基线特征包括患者的年龄、性别、种族、语言、保险和癌症诊断。主要结果为正式的 REI 咨询和生育力保存选择。结果:58 位符合条件的患者中有 19 位接受了正式的 REI 咨询。如果接受了咨询,患者更有可能选择保留生育力。女性比男性更有可能接受咨询,也更有可能选择保留生育力。与年轻患者相比,年龄≥16 岁的患者更有可能接受咨询。然而,所有接受咨询的小于 16 岁的患者都选择了保留生育力。不同种族、语言或保险的患者在咨询方面没有差异。在接受 REI 咨询的 19 位患者中,有 13 位选择了保留生育力。11 位女性中有 10 位选择了卵巢抑制,这是一种未经证实的生育力保存方法。两名男性选择了精液冷冻保存。结论:正规 REI 咨询的利用率不足以及相对缺乏经证实的生育力保存选择,可能说明年轻肿瘤患者和为他们提供护理的医疗人员需要提高生育力保存意识。为所有符合条件的患者自动提供正式 REI 咨询的简化流程可能会最大限度地发挥全面咨询的潜力,并提高患者对生育力保存的参与度。
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引用次数: 0
Navigating the Cancer Journey: Experiences and Perspectives of Young Adult Patients in Tunisia. 癌症之旅:突尼斯年轻成人患者的经历和观点。
IF 2 4区 医学 Q2 Medicine Pub Date : 2024-04-05 DOI: 10.1089/jayao.2023.0106
Y. Berrazaga, H. Rachdi, Myriam Saadi, A. A. Haouari, S. Fendri, N. Daoud, N. Mejri, H. Boussen
Purpose: This study aimed to explore the experiences of young adult cancer patients within the Tunisian context. Methods: A total of 104 patients between the ages of 20 and 40, undergoing treatment for various types and stages of cancer, participated in a questionnaire-based survey. The survey encompassed topics related to the socioeconomic and psychological impacts of cancer, coping mechanisms, relationships, sexuality, and future aspirations. Results: Of the participants, 78 were women (75%) and 26 were men (25%), with an average age of 33 years. Financial difficulties were reported by 60 patients (57.7%). The most common emotional responses to the diagnosis were sadness (54.8%), followed by denial (18.3%) and anger (5.8%). Thirteen patients (12.5%) choose not to receive information about the stage of their disease. In addition, 42 patients (40.4%) experienced a decrease in perceived physical attractiveness, while negative effects on sexuality were observed in 44.2% of cases. The primary concerns reported by patients were the fear of recurrence or progression (48%) and infertility (48%). Furthermore, 43 patients (41.3%) expressed a decrease in self-confidence, notably influenced by financial difficulties (OR: 2.77 [95% CI: 1.12-6.87]), physical alterations (OR: 0.18 [95% CI: 0.07-0.45]), and sexual issues (OR: 0.17 [95% CI: 0.06-0.48]). Notably, 78 patients (75%) continued to make future plans, particularly those under 30 years of age (OR: 0.2 [95% CI: 0.04-0.96]). Moreover, 47.1% of patients expressed an inclination toward immigration to developed countries, primarily due to perceived superior health care systems (61.5%). Conclusions: Young cancer patients face a range of social and psychological challenges, suggesting the necessity for a specialized care approach.
目的:本研究旨在探讨突尼斯年轻成人癌症患者的经历。研究方法共有 104 名年龄在 20 岁至 40 岁之间、正在接受不同类型和不同阶段癌症治疗的患者参加了问卷调查。调查内容包括癌症的社会经济和心理影响、应对机制、人际关系、性生活和未来愿望。调查结果显示参与者中有 78 名女性(占 75%)和 26 名男性(占 25%),平均年龄为 33 岁。有 60 名患者(57.7%)表示有经济困难。对诊断结果最常见的情绪反应是悲伤(54.8%),其次是否认(18.3%)和愤怒(5.8%)。13名患者(12.5%)选择不接受有关其疾病阶段的信息。此外,42 名患者(40.4%)认为自己的身体吸引力下降,44.2%的病例观察到对性生活的负面影响。患者报告的主要担忧是害怕复发或病情恶化(48%)和不孕(48%)。此外,43 名患者(41.3%)表示自信心下降,主要受到经济困难(OR:2.77 [95% CI:1.12-6.87])、身体改变(OR:0.18 [95% CI:0.07-0.45])和性问题(OR:0.17 [95% CI:0.06-0.48])的影响。值得注意的是,78 名患者(75%)继续制定未来计划,尤其是 30 岁以下的患者(OR:0.2 [95% CI:0.04-0.96])。此外,47.1% 的患者表示倾向于移民到发达国家,这主要是由于他们认为发达国家的医疗保健系统优越(61.5%)。结论年轻癌症患者面临着一系列社会和心理挑战,这表明有必要采取专门的护理方法。
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引用次数: 0
Current Status and Issues of Collaboration Between Physicians and Pharmacists in Fertility Preservation. 医生与药剂师在生育力保存方面的合作现状与问题。
IF 2 4区 医学 Q2 Medicine Pub Date : 2024-04-03 DOI: 10.1089/jayao.2023.0161
T. Maezawa, Masahito Yonemura, Kaede Baba, Hiroki Takeuchi, Miki Hioki, Ayako Nishimura, H. Minatogawa, Tomoyuki Utano, Kazuma Amino, Masami Ito, Naohiro Akita, Tsuguo Iwatani, N. Suzuki
Purpose: This study addresses the critical issue of fertility preservation among young patients with cancer in Japan, recognizing the brief decision-making window and the need for comprehensive support. Pharmacists, well-versed in the side effects of anticancer drugs, can play a vital role in this support process. However, the extent of pharmacists' involvement in fertility preservation remains unclear. We aimed to investigate pharmacists' roles in addressing cancer treatment-induced fertility concerns and their collaboration with physicians, offering insights into enhancing pharmacist participation in fertility preservation. Methods: A survey conducted between April and July 2022 targeted doctors and pharmacists at cancer treatment hospitals, along with pharmacists affiliated with the Japanese Society of Pharmaceutical Health Care and Sciences. Results: Our findings indicated that although pharmacists had limited knowledge about gonadotoxicity and fertility, they expressed readiness to conduct research and provide information when consulted. Approximately 10%-20% of the pharmacists participated in explaining the primary disease at diagnosis. Pharmacists played a more prominent role after establishing chemotherapy regimens, with less involvement in its formulation. Notably, treatment decision case conferences emerged as crucial forums for gathering patient data, confirming treatment plans, and identifying those in need for fertility preservation information. Roughly half of the pharmacists attended these conferences, suggesting a need for increased participation. Conclusion: Enhancing physician-pharmacist collaboration could be pivotal for effective fertility preservation. This requires augmenting the knowledge and awareness of both professions and encouraging greater participation in case conferences to create a conducive environment for addressing this critical aspect of cancer care.
目的:本研究探讨了日本年轻癌症患者保留生育力的关键问题,认识到决策窗口期很短,需要全面的支持。药剂师熟知抗癌药物的副作用,可以在这一支持过程中发挥重要作用。然而,药剂师在生育力保存方面的参与程度仍不明确。我们旨在调查药剂师在解决癌症治疗引起的生育问题方面的作用以及他们与医生的合作情况,从而为加强药剂师在生育力保护方面的参与提供见解。调查方法我们在 2022 年 4 月至 7 月期间进行了一项调查,调查对象是癌症治疗医院的医生和药剂师,以及隶属于日本医药保健和科学协会的药剂师。结果我们的调查结果表明,虽然药剂师对性腺毒性和生育的了解有限,但他们表示愿意开展研究,并在接受咨询时提供相关信息。大约 10%-20%的药剂师在诊断时参与解释原发疾病。在确定化疗方案后,药剂师的作用更加突出,但参与制定化疗方案的比例较低。值得注意的是,治疗决策病例会议成为收集患者数据、确认治疗方案和识别需要保留生育力信息的患者的重要论坛。大约有一半的药剂师参加了这些会议,这表明有必要提高参与度。结论加强医生与药剂师之间的合作对于有效保存生育能力至关重要。这需要增强这两个行业的知识和意识,鼓励更多的人参与病例讨论,为解决癌症护理中这一关键问题创造有利环境。
{"title":"Current Status and Issues of Collaboration Between Physicians and Pharmacists in Fertility Preservation.","authors":"T. Maezawa, Masahito Yonemura, Kaede Baba, Hiroki Takeuchi, Miki Hioki, Ayako Nishimura, H. Minatogawa, Tomoyuki Utano, Kazuma Amino, Masami Ito, Naohiro Akita, Tsuguo Iwatani, N. Suzuki","doi":"10.1089/jayao.2023.0161","DOIUrl":"https://doi.org/10.1089/jayao.2023.0161","url":null,"abstract":"Purpose: This study addresses the critical issue of fertility preservation among young patients with cancer in Japan, recognizing the brief decision-making window and the need for comprehensive support. Pharmacists, well-versed in the side effects of anticancer drugs, can play a vital role in this support process. However, the extent of pharmacists' involvement in fertility preservation remains unclear. We aimed to investigate pharmacists' roles in addressing cancer treatment-induced fertility concerns and their collaboration with physicians, offering insights into enhancing pharmacist participation in fertility preservation. Methods: A survey conducted between April and July 2022 targeted doctors and pharmacists at cancer treatment hospitals, along with pharmacists affiliated with the Japanese Society of Pharmaceutical Health Care and Sciences. Results: Our findings indicated that although pharmacists had limited knowledge about gonadotoxicity and fertility, they expressed readiness to conduct research and provide information when consulted. Approximately 10%-20% of the pharmacists participated in explaining the primary disease at diagnosis. Pharmacists played a more prominent role after establishing chemotherapy regimens, with less involvement in its formulation. Notably, treatment decision case conferences emerged as crucial forums for gathering patient data, confirming treatment plans, and identifying those in need for fertility preservation information. Roughly half of the pharmacists attended these conferences, suggesting a need for increased participation. Conclusion: Enhancing physician-pharmacist collaboration could be pivotal for effective fertility preservation. This requires augmenting the knowledge and awareness of both professions and encouraging greater participation in case conferences to create a conducive environment for addressing this critical aspect of cancer care.","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-04-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140748395","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
Development of a Patient-Reported Sexual Health Outcomes Battery for Use in Adolescent and Young Adult Cancer Clinical Trials. 开发用于青少年癌症临床试验的患者报告性健康结果数据库。
IF 2 4区 医学 Q2 Medicine Pub Date : 2024-04-03 DOI: 10.1089/jayao.2023.0115
Jenna Demedis, Kristin M Bingen, B. Cherven, Natasha N. Frederick, David R Freyer, Jennifer M Levine, Jessica K Sheth Bhutada, G. P. Quinn, Sharon L Bober, Adam S DuVall
{"title":"Development of a Patient-Reported Sexual Health Outcomes Battery for Use in Adolescent and Young Adult Cancer Clinical Trials.","authors":"Jenna Demedis, Kristin M Bingen, B. Cherven, Natasha N. Frederick, David R Freyer, Jennifer M Levine, Jessica K Sheth Bhutada, G. P. Quinn, Sharon L Bober, Adam S DuVall","doi":"10.1089/jayao.2023.0115","DOIUrl":"https://doi.org/10.1089/jayao.2023.0115","url":null,"abstract":"","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-04-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140747974","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
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 Q2 Medicine 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
The Development of a Bereavement Support Group Curriculum for Bereaved Parents of Young Adult Children: Bridging the Gap. 为年幼成年子女的丧亲父母制定丧亲支持小组课程:弥合差距。
IF 2 4区 医学 Q2 Medicine Pub Date : 2024-04-01 Epub Date: 2023-10-23 DOI: 10.1089/jayao.2023.0060
Sue E Morris, Annelise K Ryan, Paige Malinowski, Cristina Pozo-Kaderman, Karen M Fasciano

Purpose: There is limited research addressing the bereavement needs of parents whose young adult (YA) children have died from cancer. Research within oncology about the impact of child loss has tended to focus on parents of pediatric aged children. We adapted a general bereavement support group curriculum used with adults to address the unique needs of bereaved parents of YAs. Methods: Using a quality improvement framework, 25 bereaved parents of YA children participated in one of three 6-session bereavement support group programs during 2020 and 2021. Due to the coronavirus disease 2019 (COVID-19) pandemic, the programs were offered virtually. The participants provided feedback and completed an evaluation. Results: Nineteen mothers and six fathers participated with 20 (80%) completing the evaluation. The median time since the death of their child was 6 months. The participants evaluated the program highly, reporting that they felt less isolated (4.25/5 on a 5-point Likert scale); that their concerns were similar to others (4.45/5); and the discussion topics were relevant (4.20/5). Other topics that were identified included the impact on the family of losing a YA child, and how other relationships change. Forty-five percent of participants expressed a preference for a hybrid delivery model, incorporating in-person and virtual sessions. The majority also wished to continue meeting monthly, given they had little contact with other bereaved parents of YAs. Conclusion: The general bereavement support group curriculum was readily adapted for use with bereaved parents of YA children who died from cancer. A hybrid delivery model was the preferred method for future groups.

目的:针对年轻成年(YA)儿童死于癌症的父母的丧亲需求的研究有限。肿瘤学领域关于儿童丢失影响的研究往往集中在儿科年龄儿童的父母身上。我们对成人使用的一般丧亲支持小组课程进行了调整,以满足YA丧亲父母的独特需求。方法:使用质量改进框架,在2020年和2021年期间,25名YA儿童的丧亲父母参加了三个6期丧亲支持小组项目中的一个。由于2019冠状病毒病(新冠肺炎)大流行,这些项目是虚拟提供的。参与者提供了反馈并完成了评估。结果:19位母亲和6位父亲参与了评估,其中20位(80%)完成了评估。孩子死亡后的中位时间为6个月。参与者对该项目评价很高,报告称他们感觉不那么孤立(Likert量表5分为4.25/5);他们的担忧与其他人相似(4.45/5);讨论的主题是相关的(4.20/5)。确定的其他主题包括失去一个YA孩子对家庭的影响,以及其他关系如何改变。45%的参与者表示更喜欢混合交付模式,包括面对面和虚拟会议。大多数人还希望继续每月会面,因为他们与YA的其他丧亲父母几乎没有联系。结论:一般丧亲支持小组课程很容易适用于死于癌症的YA儿童的丧亲父母。混合递送模式是未来群体的首选方法。
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引用次数: 0
Improving Supportive and Palliative Care Integration in Adolescent and Young Adult Cancer. 改善青少年和青年癌症的支持和姑息治疗整合。
IF 2 4区 医学 Q2 Medicine Pub Date : 2024-04-01 Epub Date: 2023-10-25 DOI: 10.1089/jayao.2023.0096
Ruwanthie Amanda Fernando

Purpose: Timely supportive and palliative care (SPC) integration in adolescent and young adult (AYA) cancer management is recommended in curative and palliative settings. However, multiple barriers exist to implementing this goal. Liverpool Cancer Therapy Center (LCTC) serviced a growing AYA (15-39 years) population without AYA-dedicated services and the vast majority receiving no SPC engagement. Concerned this was placing AYA patients' wellbeing at risk, we determined a cultural change was required and that the newly established AYA Supportive and Palliative Care (AYASPC) Service could facilitate this. Methods: The AYASPC Service conducted a 6-month quality improvement project aiming to increase its referrals from a baseline average of one per month to four per month, to increase confidence in making SPC referrals and to enhance appreciation for specialized AYA care. Interventions included formalizing an AYASPC referral pathway with broad indications, and educating clinicians on holistic AYA care, the AYASPC Service's model of care (MoC) and AYASPC referral benefits. Results: During the project, 27 AYASPC referrals were made. Referrals consistently exceeded the Service's baseline, and from 3 months onward exceeded the project target. Additionally, referrals were made earlier (29.6% at diagnosis), for a variety of cancer diagnoses with varied prognoses, and for indications beyond traditional issues of complex symptoms and end-of-life care. Clinicians also expressed greater confidence in supporting AYAs and making SPC referrals. Conclusion: In a brief timeframe, the AYASPC Service's innovative and adaptable MoC and project interventions sustainably improved AYASPC access and affected a positive cultural shift around AYA care and advocacy.

目的:在治疗和姑息治疗环境中,建议在青少年和年轻人(AYA)癌症管理中及时整合支持和姑息治疗(SPC)。然而,实现这一目标存在多重障碍。利物浦癌症治疗中心(LCTC)为不断增长的AYA(15-39岁)人口提供服务,但没有专门的AYA服务,绝大多数人没有接受SPC参与。由于担心这会危及AYA患者的健康,我们确定需要进行文化变革,新成立的AYA支持和姑息治疗(AYASPC)服务可以促进这一点。方法:AYASPC服务进行了一个为期6个月的质量改进项目,旨在将其转诊从基线平均每月一次增加到每月四次,以提高对SPC转诊的信心,并提高对专业AYA护理的赞赏。干预措施包括正式制定具有广泛适应症的AYASPC转诊途径,并就整体AYA护理、AYASPC服务的护理模式(MoC)和AYASPC的转诊福利对临床医生进行教育。结果:在项目期间,共转介了27名AYASPC。转介人数一直超过服务的基线,从3个月起超过了项目目标。此外,早期转诊(诊断时为29.6%),用于各种预后不同的癌症诊断,以及复杂症状和临终关怀等传统问题之外的适应症。临床医生也表示对支持AYA和SPC转诊更有信心。结论:在短时间内,AYASPC服务创新和适应性强的MoC和项目干预措施可持续地改善了AYASPC的使用,并影响了围绕AYA护理和宣传的积极文化转变。
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Journal of adolescent and young adult oncology
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