Journal of adolescent and young adult oncology最新文献

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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
Journal of adolescent and young adult oncology Pub Date : 2024-04-08 DOI: 10.1089/jayao.2023.0148
Alexandra Piselli, Jacqueline C Yano, Veronica Gomez-Lobo
{"title":"Assessing Attitudes and Understanding After Ovarian Tissue Cryopreservation: A Follow-Up Telephone Interview Survey.","authors":"Alexandra Piselli, Jacqueline C Yano, Veronica Gomez-Lobo","doi":"10.1089/jayao.2023.0148","DOIUrl":"https://doi.org/10.1089/jayao.2023.0148","url":null,"abstract":"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.","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-04-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140728761","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
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
Journal of adolescent and young adult oncology Pub Date : 2024-04-05 DOI: 10.1089/jayao.2023.0105
Thi Thao Vi Luong, Catherine Mitchell, Julie Lokan, Jessica Ng, Jeremy Lewin
{"title":"Long-Term Survival in an Adolescent and Young Adult with Metastatic Relapse of an Undifferentiated Embryonal Sarcoma of the Liver.","authors":"Thi Thao Vi Luong, Catherine Mitchell, Julie Lokan, Jessica Ng, Jeremy Lewin","doi":"10.1089/jayao.2023.0105","DOIUrl":"https://doi.org/10.1089/jayao.2023.0105","url":null,"abstract":"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.","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140737196","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
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
Journal of adolescent and young adult oncology 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
{"title":"Reproductive Concerns and Associated Factors Among Adolescent and Young Adult Cancer Survivors in Uganda: A Hospital-Based Cross-Sectional Study.","authors":"Richard Nyeko, Nelson Okello, Christine Joy Abeja, Proscovia Adyanga, Betty Apio, C. Nabasirye, Pamella Aol Mwa, R. Angom, F. Geriga, Julie Buser","doi":"10.1089/jayao.2023.0184","DOIUrl":"https://doi.org/10.1089/jayao.2023.0184","url":null,"abstract":"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.","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140738103","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
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
Journal of adolescent and young adult oncology Pub Date : 2024-04-05 DOI: 10.1089/jayao.2024.0009
Lindsay A Hartup, Virginia-Arlene Go, Randal D Robinson
{"title":"Standardized Reproductive Endocrinology and Infertility Consultation for Pediatric and Adolescent Oncology Patients.","authors":"Lindsay A Hartup, Virginia-Arlene Go, Randal D Robinson","doi":"10.1089/jayao.2024.0009","DOIUrl":"https://doi.org/10.1089/jayao.2024.0009","url":null,"abstract":"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.","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140735788","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
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
Journal of adolescent and young adult oncology 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
{"title":"Navigating the Cancer Journey: Experiences and Perspectives of Young Adult Patients in Tunisia.","authors":"Y. Berrazaga, H. Rachdi, Myriam Saadi, A. A. Haouari, S. Fendri, N. Daoud, N. Mejri, H. Boussen","doi":"10.1089/jayao.2023.0106","DOIUrl":"https://doi.org/10.1089/jayao.2023.0106","url":null,"abstract":"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.","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140737754","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
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
Journal of adolescent and young adult oncology 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
{"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
Journal of adolescent and young adult oncology 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
Journal of adolescent and young adult 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
{"title":"Documentation of Infertility Risk Discussion in Cancer Patients Receiving Cancer-Directed Therapy: The UC Davis Cancer Center Experience.","authors":"Colleen McCann, Natalie Kamiyama, Debra Burgess, Angela E Usher, Jeffrey Fine, Machelle Wilson, Andrea Iannucci, Gary S Leiserowitz, Marcio Malogolowkin","doi":"10.1089/jayao.2023.0034","DOIUrl":"10.1089/jayao.2023.0034","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> 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. <b><i>Methods:</i></b> 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. <b><i>Results:</i></b> 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 (<i>p</i> < 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 (<i>p</i> = 0.13). In the pre-implementation group, 5% underwent fertility preservation versus 27.8% in the post-implementation group (<i>p</i> = 0.0001). Of the 27 patients who received fertility preservation, 13 received hormonal therapy, 11 sperm banking, and 3 egg harvesting. <b><i>Conclusion:</i></b> 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.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10059855","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
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
Journal of adolescent and young adult oncology 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
{"title":"The Development of a Bereavement Support Group Curriculum for Bereaved Parents of Young Adult Children: Bridging the Gap.","authors":"Sue E Morris, Annelise K Ryan, Paige Malinowski, Cristina Pozo-Kaderman, Karen M Fasciano","doi":"10.1089/jayao.2023.0060","DOIUrl":"10.1089/jayao.2023.0060","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> 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. <b><i>Methods:</i></b> 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. <b><i>Results:</i></b> 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. <b><i>Conclusion:</i></b> 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.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49690579","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
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
Journal of adolescent and young adult oncology Pub Date : 2024-04-01 Epub Date: 2023-10-25 DOI: 10.1089/jayao.2023.0096
Ruwanthie Amanda Fernando
{"title":"Improving Supportive and Palliative Care Integration in Adolescent and Young Adult Cancer.","authors":"Ruwanthie Amanda Fernando","doi":"10.1089/jayao.2023.0096","DOIUrl":"10.1089/jayao.2023.0096","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> 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. <b><i>Methods:</i></b> 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. <b><i>Results:</i></b> 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. <b><i>Conclusion:</i></b> 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.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":2.0,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"50157983","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
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