Journal of adolescent and young adult oncology最新文献

{"title":"\"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.","authors":"Carolin Wilharm, Anne Pralong, Mara Weiß, Saskia Blütgen, Michael Hallek, Raymond Voltz, Steffen T Simon, Armin Tuchscherer","doi":"10.1089/jayao.2023.0158","DOIUrl":"10.1089/jayao.2023.0158","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> 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. <b><i>Methods:</i></b> 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. <b><i>Results:</i></b> 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. <b><i>Conclusion:</i></b> 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. <b><i>Trial Registration Number:</i></b> DRKS00030277 (German Clinical Trials Register); September 27, 2022.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"859-866"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141070485","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}

{"title":"Communicating Adolescent and Young Adult Oncology Treatment Guidelines in Practice: The Importance of Documentation for Ensuring Positive Impacts on Oncology Care.","authors":"Jaya Mallela, Lila Pereira, Emily Simon, Shreya Makkapati, Shannon Forty, Samantha Bruno, Tara Giblin, Jeremy Rosenblum","doi":"10.1089/jayao.2023.0188","DOIUrl":"10.1089/jayao.2023.0188","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Improvements in outcomes for adolescent and young adult (AYA) oncology patients have lagged behind those of other age-specific cancer populations. Research has indicated that low availability of clinical trials, biological differences of this age-group, and several psychosocial factors including higher emotional distress impact outcomes. To improve care and survival rates for these patients, hospitals have implemented AYA oncology programs. The current study evaluated documentation of care in an AYA program housed in an academic medical center based on three areas emphasized in the National Comprehensive Cancer Network's Clinical Practice Guidelines in Oncology for AYAs: clinical trial enrollment, fertility, and psychosocial care. <b><i>Methods:</i></b> Retrospective chart reviews were conducted for 45 patients treated before the start of the AYA oncology program and 45 patients treated after program initiation. Patients aged 15-39 years with a diagnosis of a malignant tumor were included. Variables evaluated included documentation of clinical trial enrollment, fertility preservation and sexual health considerations, and behavioral health referrals. <b><i>Results:</i></b> Documentation of most clinical trial and fertility variables did not significantly improve from pre- to post-program, although a higher number of patients had these variables documented post-program. Behavioral health referrals increased significantly from 52.8% pre-program to 95.4% post-program. <b><i>Conclusion:</i></b> Access to behavioral health care improved the most following implementation of our AYA program, which is likely because of the integration of a dedicated psychologist for AYAs when the program began. The practice of guideline-based care for this population can be better assessed and improved with designated behavioral health providers and more systematic documentation processes.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"852-858"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141498109","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}

{"title":"Systematic Review of the Gonadotoxicity and Risk of Infertility of Soft Tissue Sarcoma Chemotherapies in Pre- and Postpubertal Females and Males.","authors":"Marcel Steinmann, Anita Rietschin, Flavia Pagano, Tanya Karrer, Attila Kollár, Susanna Weidlinger, Michael von Wolff","doi":"10.1089/jayao.2024.0057","DOIUrl":"10.1089/jayao.2024.0057","url":null,"abstract":"<p><p>Increasing awareness of gonadotoxicity in cancer treatments and infertility risk is essential for counseling young cancer patients. While fertility preservation options are available in many countries, limited data on gonadotoxicity hinder recommendations, especially for soft tissue cancers. This review, part of the FertiTOX project (www.fertitox.com), organized by FertiPROTEKT (www.fertiprotekt.com), aims to address this knowledge gap to improve fertility preservation guidance. We performed a systematic literature search on gonadotoxicity in soft tissue sarcoma (STS) cancer treatments. Only patients without metastases or recurrent disease were considered. \"Suspected infertility\" was defined based on low ovarian reserve parameters, low inhibin B levels, high gonadotropin concentration, gonadal dysfunction, amenorrhea, oligomenorrhea, azoospermia, or oligozoospermia due to limited infertility data. The study quality was assessed using the Newcastle-Ottawa Scale. The search yielded 3309 abstracts, with 138 undergoing full-text analysis. Eight studies on STS were included. Suspected infertility was observed in 20 of 28 females (71.4%, range 0-100%) and 38 of 63 males (60.3%, range 34.8-100%) with STS. Six of the eight studies received high-quality scores on the NOS, while two received a fair score. Our data suggest a high risk of infertility from chemotherapy in pre- and postpubertal STS survivors. This underscores the importance of considering fertility preservation measures when counseling these patients.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"803-812"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141599827","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}

{"title":"Cancer and Fertility: Exploring Uncertainty Management Strategies of Young Adult Female Survivors.","authors":"Annemarie D Jagielo, Alexandra M Davis, Devon Pons, Michael A Diefenbach, Jennifer S Ford, Lidia Schapira, Catherine Benedict","doi":"10.1089/jayao.2024.0015","DOIUrl":"10.1089/jayao.2024.0015","url":null,"abstract":"<p><p>This study describes young adult female (YA-F) cancer survivors' uncertainty management strategies related to fertility/family building. Cross-sectional data were analyzed (<i>n</i> = 98). Participants reported higher rates of seeking information to reduce fertility-related uncertainty (M = 5.48, ±1.03), than avoiding information (M = 4.77, ±1.29). Controlling for relevant covariates (i.e., reproductive distress, household income, and health literacy), greater avoidance was related to higher reproductive distress (β = 0.293, <i>p</i> = 0.011) and lower household income (β = -0.281, <i>p</i> = 0.047). Evidence suggests that some survivors may avoid fertility-related information to manage uncertainty and distress, which may impact family-building success. Fertility avoidance may be an important target of intervention.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"882-887"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11698659/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141432031","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Informed Consent and Adolescents with Cancer: Challenges and Tools in Online Studies.","authors":"Maria Carolina Neves, Sara Monteiro, Judith B Prins, Célia M D Sales","doi":"10.1089/jayao.2023.0154","DOIUrl":"10.1089/jayao.2023.0154","url":null,"abstract":"","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"799-802"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141498111","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}

{"title":"The Experience of Adolescents and Young Adults in Their Cancer Journeys in Japan: I Try to Move Forward With Feeling That I Would Be Okay With \"My Cancer\".","authors":"Naoko Takenouchi, Mari Matsuoka","doi":"10.1089/jayao.2024.0017","DOIUrl":"10.1089/jayao.2024.0017","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> A cancer diagnosis can greatly affect adolescents and young adults (AYAs), especially those in their late teens and early twenties, who might have their special needs. This study aimed to understand the experiences of the AYAs who were diagnosed between 15 and 24 years of age in Japan, thinking about the care guide supporting them, from the time of their cancer diagnosis through the rest of their lives. <b><i>Methods:</i></b> Data were collected using semi-structured interviews, which were audio recorded and transcribed verbatim. Qualitative analysis of the transcripts was used to categorize these into themes for comprehensive interpretation. <b><i>Results:</i></b> Twenty AYAs participated; they were diagnosed between the ages 15 and 23 and were 19-29 years old at the time of the interview. In total, 14 core categories were identified, consisting of three themes (1) There is a feeling of distance between the cancer and me, (2) I face \"my cancer\" in my way, and (3) I feel that I would be okay with \"my cancer.\" <b><i>Conclusions:</i></b> AYAs had their way of dealing with cancer while experiencing a distant feeling between themselves and the presence of the disease during their cancer journey. Although the process was not simple, they tried to live their lives in their own way, believing that they would be okay. Nurses must respect and understand that AYAs have a process of facing their own cancer with time and watch over AYAs' experiences to appropriately support them to successfully proceed further.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"826-834"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141619951","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}

{"title":"Nonsuicidal Self-Injury in Adolescent and Emerging Adult Childhood Cancer Survivors: A First Exploration.","authors":"Sara Campens, Laurence Claes, Janne Vanderhaegen, Elise Van Laere, Sofie Prikken, Jurgen Lemiere, Anne Uyttebroeck, Koen Luyckx","doi":"10.1089/jayao.2024.0061","DOIUrl":"10.1089/jayao.2024.0061","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> This study examines nonsuicidal self-injury (NSSI) in adolescent and emerging adult survivors of childhood cancer, aiming to gain a first understanding of the phenomenon, its relation to general and cancer-specific functioning, and the stability of NSSI engagement over time. <b><i>Methods:</i></b> Dutch-speaking survivors (<i>n</i> = 125, age range = 14-25 years) participated in the first three annual waves of the Longitudinal Identity Study of Childhood Cancer Survivors study. Descriptive characteristics of lifetime NSSI were calculated. Multivariate analysis of variance (MANOVA) and χ²-analyses were performed to examine differences in demographic and clinical characteristics between survivors with and without lifetime NSSI. To assess differences in general and cancer-specific functioning between survivors with and without lifetime NSSI, two MANOVA analyses were performed. Finally, prevalence rates of current NSSI across the three waves were calculated, followed by χ²-analyses to explore differences in current NSSI over time. <b><i>Results:</i></b> The prevalence and characteristics of lifetime NSSI engagement resembled those in the general population. Although demographic and clinical characteristics were unrelated to NSSI engagement, several meaningful differences were found in both general and cancer-specific functioning between survivors with and without NSSI. Survivors with lifetime NSSI experienced more depressive symptoms and difficulties with identity formation (i.e., lower levels of identity synthesis and higher levels of identity confusion). In addition, they experienced more post-traumatic stress symptoms and cancer-related worries, and identified less as a \"cancer patient.\" <b><i>Conclusions:</i></b> This study provides a first understanding of NSSI engagement in survivors of childhood cancer, mapping the characteristics of NSSI and its associations with both general and cancer-specific functioning.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"813-819"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141534372","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}

{"title":"Utilization of the Adolescent and Young Adult Psycho-Oncology Screening Tool in a Pediatric Hospital Adolescent/Young Adult Program.","authors":"Daniel Elledge, Antonia Leavitt, Alice Hoeft, Karen Albritton","doi":"10.1089/jayao.2023.0170","DOIUrl":"10.1089/jayao.2023.0170","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> The AYA Psycho-Oncology Screening Tool was developed to assess adolescent and young adult (AYA) patients' distress during cancer treatment. The on-treatment distress screening tool has been validated with AYAs and includes a 10-point distress thermometer (DT) and a 53-item problem checklist (PCL). However, previous studies have not solely examined AYA cancer distress within a children's hospital. Therefore, our project aimed to explore AYA distress in a pediatric cancer setting. <b><i>Methods:</i></b> AYA-aged participants (aged ≥15) were given the distress screener initially within 1 month of diagnosis and every 2, 4, or 6 months, depending on their previous distress score. Chi-square, independent <i>t</i>-tests, and binary logistic regressions were conducted for data analysis. <b><i>Results:</i></b> Between January 2021 and July 2022, we completed 123 screenings in 68 AYAs (age 15-30) on treatment. Average DT score was 2.96 with 30% of participants endorsing distress levels of 5 and above. There were statistically significant differences by sex as females endorsed higher levels of distress compared with males. Adolescents (<18) endorsed statistically significant higher frequency of emotional PCL items in comparison with young adults (≥18). There were no differences by race or diagnosis. <b><i>Conclusions:</i></b> Our team gained awareness of specific areas of concerns for AYAs, allowing for more targeted interventions for distressed participants. Certain demographic variables may put participants at risk for increased distress. As a result of the project, a protocol has been developed to follow up with participants if they report a certain distress score (5 or above) and/or endorse critical items.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"820-825"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141498112","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}

{"title":"Understanding Young Adult Cancer Survivors' Engagement with Cancer Storylines in Entertainment Media Narratives.","authors":"Meredith K Reffner Collins, Allison J Lazard, Francesca Dillman Carpentier, Maria Leonora Comello, Catherine Benedict, Erin E Kent, Clara Yu","doi":"10.1089/jayao.2023.0175","DOIUrl":"10.1089/jayao.2023.0175","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Some young adult cancer survivors (YACS; ages 18-39) struggle to incorporate their cancer experiences into their identities. Using stories, or narratives, is a new approach that could help YACS to integrate cancer and their identity. These stories offer opportunities to experience perspectives outside of oneself, which can build validation and self-compassion. However, little is known about whether stories about cancer (i.e., the threat itself) are beneficial. <b><i>Method:</i></b> YACS completed an online survey about their engagement with cancer storylines in entertainment media narratives (e.g., books, movies, and television shows). They also described their reactions to encountering these storylines in entertainment media. <b><i>Results:</i></b> Participants (<i>n</i> = 108) were primarily White. Participants who sought cancer storylines reported a more positive impact of cancer on their sense of purpose and identity. Among YACS who had completed treatment, cancer storylines were sought after treatment more than during treatment. In addition, compared with their peers, participants who identified as Black reported greater cancer storyline seeking both during and after treatment. Nearly half of participants (<i>n</i> = 45, 47.4%) described reactions to cancer-related storylines as positive or mixed, primarily owing to feelings of inspiration or validation. <b><i>Conclusion:</i></b> Consuming cancer storylines can offer some benefits for YACS, especially among those finished with treatment and those who identify as Black. However, not all YACS responded positively, so future research should investigate which YACS could benefit most from cancer-related storylines. Nonetheless, entertainment media narratives represent a novel approach to supporting YACS' integration of cancer into their identity.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"867-875"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140921278","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}

{"title":"<i>In Vitro</i> Maturation of Oocytes Obtained from Ovarian Cortex Among Postpubertal Hematological Cancer Patients Undergoing Fertility Preservation.","authors":"Gilad Karavani, Einat Gutman-Ido, Aharon Dick, Koral Vedder, Nir Cohen, Talya Mordechai-Daniel, Raizl Gruda Sussman, Tal Imbar","doi":"10.1089/jayao.2023.0157","DOIUrl":"10.1089/jayao.2023.0157","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> <i>In vitro</i> maturation (IVM) of oocytes obtained from ovarian tissue during ovarian tissue cryopreservation (OTC) is a technique for fertility preservation in patients with cancer obviating the need to postpone chemotherapy initiation. Little is known about IVM outcomes in hematological malignancies, especially post-chemotherapy. The purpose of this study was to evaluate the effect of cytotoxic treatment on the potential to retrieve immature oocytes and mature them <i>in vitro</i> and examine the association between serum inflammatory markers and these results. <b><i>Methods:</i></b> In this retrospective study, we evaluated inflammation markers, including B symptoms and IVM outcomes of 78 chemotherapy-naive and exposed patients diagnosed with Hodgkin lymphoma (HL), non-Hodgkin lymphoma (NHL), acute lymphoblastic leukemia (ALL), or acute myeloid leukemia (AML). <b><i>Results:</i></b> The mean number of oocytes found was 7.2 ± 7.2. The average number of oocytes matured by IVM was 2.8 ± 3.5, and a mean IVM rate was 32.1 ± 27.7%. All patients in the ALL and AML groups had previous exposure to chemotherapy before OTC, compared with 50.0% (7/14) and 31.9% (15/47) in the NHL and HL groups, respectively. Among patients with lymphoma, chemotherapy exposure was associated with the reduced number of retrieved oocytes (9.8 ± 7.7 vs. 5.3 ± 5.7 oocytes, <i>p</i> = 0.049) in the HL group but not with the number of mature oocytes or IVM rate. B symptoms were not associated with IVM outcomes. Lymphocyte count (ß = 1.584; <i>p</i> = 0.038) and lactate dehydrogenase (ß = 0.009; <i>p</i> = 0.043) were the only significant parameters associated with the number of matured oocytes in a linear regression model. <b><i>Conclusion:</i></b> IVM is a promising assisted reproductive technology, which holds great potential for patients in need of urgent fertility preservation or those who cannot receive hormonal stimulation. Our results demonstrate the feasibility of the technique even in the presence of B symptoms and elevated inflammation markers and in patients with previous exposure to chemotherapy.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"835-843"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141766162","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}