Camella J Rising, Rowan Forbes Shepherd, Alix G Sleight, Patrick Boyd, Catherine Wilsnack, Ashley S Thompson, Chloe O Huelsnitz, Sadie P Hutson, Payal P Khincha, Allison Werner-Lin
{"title":"Relating to the Body Under Chronic Cancer Threat: Implications for Psychosocial Health Among Adolescents and Young Adults with Cancer Predisposition Syndromes.","authors":"Camella J Rising, Rowan Forbes Shepherd, Alix G Sleight, Patrick Boyd, Catherine Wilsnack, Ashley S Thompson, Chloe O Huelsnitz, Sadie P Hutson, Payal P Khincha, Allison Werner-Lin","doi":"10.1089/jayao.2024.0103","DOIUrl":"https://doi.org/10.1089/jayao.2024.0103","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Adolescents and young adults (AYAs) with cancer predisposition syndromes often experience significant physical and psychosocial burdens. These burdens include cancer worry and potentially distressing bodily changes due to risk-reducing procedures (e.g., mastectomy) or cancer treatments. This qualitative-descriptive study explored how AYAs with Li-Fraumeni syndrome (LFS) relate and adjust to their bodies under the chronic threat of cancer. <b><i>Methods:</i></b> Participants were enrolled in the National Cancer Institute's LFS study. This analysis included 42 AYAs with LFS aged 15-39 years at enrollment who completed one or two telephone interviews that explored LFS-related bodily experiences and challenges. Transcripts were thematically analyzed. <b><i>Results:</i></b> The majority of participants (<i>n</i> = 26/42, 62%) had ≥1 primary cancer. The mean age at first cancer diagnosis was 21 years (range = 0.5-35 years). Participants described challenges relating to the body due to frequent self-monitoring, whole-body magnetic resonance imaging scans, risk-reducing surgeries, and/or cancer treatments. Heightened body awareness and vigilance not only prompted self-protective behaviors but also triggered worry and distress. AYAs coped with bodily changes and concerns by seeking doctors' reassurance, engaging in health-protective behaviors, and reframing perceptions of their altered bodies. <b><i>Conclusion:</i></b> Findings suggest AYAs with cancer predisposition syndromes such as LFS experience difficulties relating and adjusting to the body that may compromise psychosocial health. Our results demonstrate that these difficulties may arise across the time course of genetic disease, including before a cancer diagnosis. Clinicians might support AYAs by conducting routine psychosocial risk assessments, providing anticipatory guidance regarding body-related challenges, sharing peer support resources, and referring to mental health providers, as needed.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142347051","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}
Marilyne Poiree, Leila Gofti-Laroche, Christèle Riberon, Pierre Leblond, Valerie Laurence, Nathalie Gaspar, Abel Cordoba, Cyril Lervat, Perrine Maréc-Berard
{"title":"A Review of GO-AJA's Impact on Adolescents and Young Adults with Cancer in France: A Decade of Progress and Challenges.","authors":"Marilyne Poiree, Leila Gofti-Laroche, Christèle Riberon, Pierre Leblond, Valerie Laurence, Nathalie Gaspar, Abel Cordoba, Cyril Lervat, Perrine Maréc-Berard","doi":"10.1089/jayao.2024.0020","DOIUrl":"https://doi.org/10.1089/jayao.2024.0020","url":null,"abstract":"<p><p>The \"Groupe Onco-hématologie Adolescents Jeunes Adultes\" (GO-AJA) born in 2012 is a French collaborative group. It focuses on heterogeneity and unmet needs for AYA with cancer. This article highlights GO-AJA's achievements and future prospects, emphasizing its role in structuring a professional national network, improving AYAs' comprehensive care and strengthening the roles of coordinating nurses. It also covers AYA multidisciplinary tumor boards, guidelines edition, education and training. Challenges persist, including limited AYA clinical trials and territorial inequalities in care access and team resources. Future success hinges on increased medical community awareness, stakeholders investment, and European collaborations.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142347049","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}
Archie Bleyer, Eric Tai, Stuart Siegel, Michael Roth, Daniel J DeAngelo, Wendy Stock
{"title":"Abatement of the Survival Cliff in Older Adolescents and Young Adults with Acute Lymphoblastic Leukemia and Lymphoblastic Lymphoma in the United States.","authors":"Archie Bleyer, Eric Tai, Stuart Siegel, Michael Roth, Daniel J DeAngelo, Wendy Stock","doi":"10.1089/jayao.2024.0095","DOIUrl":"https://doi.org/10.1089/jayao.2024.0095","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> In 2018, a \"survival cliff\" in the United States was identified among older adolescent and young adult (AYA) patients with acute lymphoblastic leukemia (ALL) and lymphoblastic lymphoma (LBL). This study reassessed the cliff and associated putative causes. <b><i>Methods:</i></b> Survival data were obtained using the U.S. Surveillance Research Program, National Cancer Institute (NCI) SEER 22 Registries. Accrual data on cancer treatment trials conducted by the NCI cooperative groups and NCI-designated cancer centers were obtained from the NCI Cancer Therapy Evaluation Program. Trend and average percent changes and statistical significances were identified with the NCI Joinpoint Regression Program. <b><i>Results:</i></b> A previous cliff-like decrement in the survival of 17- to 20-year-olds is no longer apparent, overall and in all racial and ethnic groups. The \"survival cliff\" age range was coincident with a clinical trial accrual cliff, and both diminished when more clinical trials were available to, and participated in by, young adult patients. Older AYA patients of ages 30-39 had minimal improvement in clinical trial accrual and least survival gain among the AYA age group. <b><i>Conclusion:</i></b> The survival cliff has abated, resulting in thousands of fewer premature deaths and tens of thousands of years of life saved-a remarkable achievement. The survival improvement may be attributed to improved clinical trial availability for and recruitment and participation of AYAs on treatment trials, application of pediatric-inspired ALL treatment regimens to AYAs, expanded national health insurance for -18 to 25 year olds, improved AYA cancer services, and a national focus on AYA oncology.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-09-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142347050","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}
Jacqueline C Yano Maher, Allison Kumnick, Ninet Sinaii, H Irene Su, Katherine E Cameron, Sobenna A George, Clarissa Gracia, Lillian R Meacham, Veronica Gomez-Lobo
{"title":"A Mega-Analysis of Anti-Müllerian Hormone Levels in Female Childhood Cancer Survivors Based on Treatment Risk, Time since Treatment, and Pubertal Status.","authors":"Jacqueline C Yano Maher, Allison Kumnick, Ninet Sinaii, H Irene Su, Katherine E Cameron, Sobenna A George, Clarissa Gracia, Lillian R Meacham, Veronica Gomez-Lobo","doi":"10.1089/jayao.2024.0093","DOIUrl":"https://doi.org/10.1089/jayao.2024.0093","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Female childhood cancer survivors (CCSs) risk infertility due to gonadotoxic chemotherapy/radiation. Anti-Müllerian hormone (AMH) helps evaluate ovarian reserve, and the 2020 Oncofertility Pediatric Initiative Network (O-PIN) risk stratification is utilized to counsel risk of gonadal dysfunction/infertility. This study analyzed how AMH levels after cancer treatment differ with age and correlate AMH with O-PIN risk level and clinical outcomes. <b><i>Methods:</i></b> A literature review and mega-analysis of individual patient data were performed. Females ages 0-20 years at the time of cancer diagnosis with AMH values post-treatment were included. AMH outcomes were compared by O-PIN risk stratification, age at diagnosis, cyclophosphamide equivalent dose (CED), and hematopoietic stem cell transplant (HSCT). Multivariable random effects mixed models correlated AMH with diminished ovarian reserve (DOR), premature ovarian insufficiency (POI), and pregnancy. <b><i>Results:</i></b> In 13 studies with 608 CCSs, the median age (years) at diagnosis was 12.0 (interquartile range [IQR] 5.2-16.2) and 21.1 (IQR 17.1-30.0) at AMH measurement. AMH values were higher with time since treatment and correlated with the O-PIN risk level. Patients with HSCT had very low/undetectable AMH levels regardless of CED; when stratified by CED, AMH levels were lower if treated peripubertally or older. AMH was detectable in 54% (34/63) of patients with POI on hormone replacement. Pregnancy did not correspond to the gonadotoxicity risk level (<i>p</i> = 0.70). <b><i>Conclusion:</i></b> This study supports utilizing the O-PIN risk stratification system in estimating risk of DOR in CCSs and its categorization by pubertal status. AMH levels may return over time even after receiving the highest risk therapy. These findings may help counsel cancer patients pre- and post-therapy.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142287689","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":"Psychological Aspects of and Support for Survivors Attempting to Conceive During or After Cancer Treatments: A Mixed-Methods Systematic Review.","authors":"Kaoru Kagawa, Yuko Yoshikawa, Tomoe Koizumi, Nao Suzuki","doi":"10.1089/jayao.2024.0016","DOIUrl":"https://doi.org/10.1089/jayao.2024.0016","url":null,"abstract":"<p><p>Advances in medical technology are expected to increase the possibilities for pregnancy for women during and after cancer treatment. We aimed to clarify the psychological dimensions of cancer diagnosis for patients hoping for a pregnancy (their own or their spouse/partner's) during or post-treatment and identify ways to improve support for these survivors and their families. A systematic literature review was conducted in May 2023 using six electronic databases: PubMed, Web of Science, Cochrane Library, PsycINFO, Ichushi-Web, and CINAHL. The search targeted English and Japanese studies with English abstracts published between January 1, 2001, and May 10, 2023. Search terms related to cancer, pregnancy, and psychological aspects were included. The initial search identified 1328 potentially relevant studies after removing duplicates. Subsequently, two reviewers screened article titles and abstracts to exclude studies with no data, those unrelated to pregnancy, and so on, and identified 44 potentially relevant studies. Two reviewers then reviewed the full text of each study, and 20 articles finally met the inclusion criteria. Several studies indicated that trying to conceive negatively impacts survivors' finances, their relationships with their spouses/partners, and their mental health. Although many participants required fertility counseling, few received such opportunities. When cancer survivors try to conceive, they experience physical, psychological, and social burdens; moreover, many report a lack of access to fertility counseling or sufficient information about reproductive health care. Health care professionals should provide patients with updated and more accurate information on reproductive medicine and fertility counseling to enhance pregnancy support during the survivorship phase.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-09-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142287690","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":"Exploring Strategies to Alleviate Reproductive Concerns in Cancer Survivors: A Comprehensive Scoping Review of International Research.","authors":"Ying Dong, Chen Zhang, Yu Fang, Yingxin Wu, Guichun Jiang","doi":"10.1089/jayao.2023.0178","DOIUrl":"https://doi.org/10.1089/jayao.2023.0178","url":null,"abstract":"<p><p><b><i>Objective:</i></b> This review aims to summarize existing interventions from the international literature addressing fertility concerns in cancer patients, providing theoretical and practical guidance for future interventions. <b><i>Methods:</i></b> In September 2023, a systematic search covering 13 databases was conducted using the methodology outlined by the Joanne Briggs Institute for a comprehensive systematic review. This search identified published English and Chinese-language papers. <b><i>Results:</i></b> A total of 20 studies meeting inclusion criteria were included in this review. The studies predominantly originated in China and the United States. A comprehensive synthesis of interventions from the included literature across three dimensions and seven aspects was conducted. The interventions primarily focused on psychological interventions and web-based self-help tools for patients. The Reproductive Concerns After Cancer Scale (RCAC) was the primary assessment tool employed. <b><i>Conclusion:</i></b> Addressing fertility concerns in cancer patients is a complex issue involving various stakeholders and diverse intervention strategies. Lessons from international research can inform the development of context-specific interventions tailored to individual needs.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-09-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142132741","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}
Lu Liu, Jie Lin, Wenjie Hu, Ting Zhao, Lina Fu, Hong Ding
{"title":"Clinicopathological and Ultrasonographic Characteristics of Breast Cancer in Young Women.","authors":"Lu Liu, Jie Lin, Wenjie Hu, Ting Zhao, Lina Fu, Hong Ding","doi":"10.1089/jayao.2024.0039","DOIUrl":"https://doi.org/10.1089/jayao.2024.0039","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> The early detection of breast cancer in women under the age of 40 has posed significant challenges. This can be attributed in part to the limited research conducted on the breast cancer in this age group, particularly with regards to large sample sizes. We aimed to address this gap by analyzing and comparing the ultrasound imaging and pathological characteristics of breast cancer in women aged under 40 and those aged 40 and above. <b><i>Methods:</i></b> A retrospective assessment was conducted to examine the ultrasound imaging and clinicopathologic characteristics of 555 women with surgically confirmed breast cancers. The patient cohort consisted of 160 individuals below the age of 40 and 395 individuals aged 40 years and above. <b><i>Results:</i></b> Our study identified the breast cancer in patients under 40 years was more likely to show regular shape (<i>p</i> = 0.043) compared with tumors in patients who were 40 years and over. Furthermore, in young female patients (<40 years), irregular shape was correlated with the HER2-enriched type (<i>p</i> = 0.02), circumscribed margin (<i>p</i> = 0.001), and a lack of calcifications (<i>p</i> = 0.02) were associated with the triple-negative type. In another group (≥40 years), only a lack of calcifications (<i>p</i> = 0.003) were associated with the triple-negative type. <b><i>Conclusion:</i></b> Breast cancer in women under the age of 40 exhibits distinct ultrasonographic characteristics patterns that vary across different immunophenotypes, which may provide certain predictive information for physicians.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-09-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142125759","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}
Laura Caton, Christelle Duprez, Cécile Flahault, Cyril Lervat, Pascal Antoine, Alice Calvez, Kristopher Lamore
{"title":"A Qualitative Study on the Transition from Pediatric to Adult Care in Oncology: How Health Care Professionals Can Adapt Their Practice?","authors":"Laura Caton, Christelle Duprez, Cécile Flahault, Cyril Lervat, Pascal Antoine, Alice Calvez, Kristopher Lamore","doi":"10.1089/jayao.2024.0071","DOIUrl":"https://doi.org/10.1089/jayao.2024.0071","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> The main objective of this study was to identify the facilitators of and barriers to the transition from pediatric to adult care for adolescents and young adults (AYAs) with cancer according to physicians and nurses working in oncology. The secondary objectives were (1) to explore the viewpoints of health care professionals (HCPs) on this transition and (2) to discover HCP's needs and the needs they perceive among AYAs and their parents. <b><i>Methods:</i></b> Semistructured interviews were conducted with 19 HCPs to discover their experiences with pediatric to adult care transitions. Thematic analysis was then conducted. <b><i>Results:</i></b> Participants reported that transitioning is a complex process influenced by numerous barriers and facilitators, which can be classified into four themes: (1) balancing the needs and relationships of the three actors involved in the transition process, (2) factors that enable HCPs to determine the ideal time for transitions, (3) institutional and organizational barriers and facilitators that challenge HCPs, and (4) HCPs' reflections on defining and improving the transition process. <b><i>Conclusion:</i></b> Beyond the lack of human and financial resources, which hinders the structuring of transitions, our results suggest the need for a paradigm shift. That is, the position given to AYAs in pediatrics before the transition needs to evolve so that they are gradually positioned at the center of the relationship with HCPs and, therefore, are the focus of care and the transition process. This will enable them to acquire the skills, knowledge, and autonomy needed for a successful transition to adult care.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-08-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142080326","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}
Maria Otth, Annette Weiser, Seok-Yun Lee, Lukas Rudolf von Rohr, Philip Heesen, Ana S Guerreiro Stucklin, Katrin Scheinemann
{"title":"Treatment of Medulloblastoma in the Adolescent and Young Adult Population: A Systematic Review.","authors":"Maria Otth, Annette Weiser, Seok-Yun Lee, Lukas Rudolf von Rohr, Philip Heesen, Ana S Guerreiro Stucklin, Katrin Scheinemann","doi":"10.1089/jayao.2024.0044","DOIUrl":"10.1089/jayao.2024.0044","url":null,"abstract":"<p><p>Medulloblastoma is the most frequent high-grade tumor of the central nervous system in children but accounts for less than 1% of these tumors in adults. Adolescent and young adult (AYA) patients are between both age groups, and different approaches are used to treat medulloblastoma in this population. We performed a systematic review of studies published between 2007 and 2023 that reported treatment approaches and survival data of AYA patients with medulloblastoma, defined as 15 to 39 years of age at diagnosis. Due to the heterogeneity of data, a meta-analysis was not possible. Except for the omission of chemotherapy after radiotherapy in a few adult studies, the treatment backbone is very similar between studies starting enrolment during childhood and older adolescence or adulthood. Despite indications for a higher rate of early treatment termination due to toxicity in adults, survival data remain comparable between studies starting enrolment earlier or later in life. However, molecular subtyping was missing in most studies, so the survival data must be interpreted cautiously. Nevertheless, pediatric-inspired strategies in the AYA population are feasible, but individual dose adjustments may be necessary during treatment and should be considered upfront. Collaborative studies investigating the best treatment approach for medulloblastoma in the AYA population are needed in the future.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-08-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142043944","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}
Mollie Rose Canzona, David E Victorson, Karly M Murphy, Marla L Clayman, Bryce B Reeve, Bonnie Patel, Ashley E Strahley, Thomas W McLean, Onengiya Harry, Michael E Roth, Regina V Smith, John M Salsman
{"title":"Designing Patient-Reported Measures of Fertility: Cognitive Interview Findings from Adolescents and Young Adults with Cancer.","authors":"Mollie Rose Canzona, David E Victorson, Karly M Murphy, Marla L Clayman, Bryce B Reeve, Bonnie Patel, Ashley E Strahley, Thomas W McLean, Onengiya Harry, Michael E Roth, Regina V Smith, John M Salsman","doi":"10.1089/jayao.2024.0042","DOIUrl":"https://doi.org/10.1089/jayao.2024.0042","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Fertility concerns (FC) are central to the well-being of many adolescent and young adult (AYA) cancer survivors. Clinical conversations about FC and fertility preservation are suboptimal, increasing patient distress. The goal of this project was to establish content validity and comprehensibility of self-report questions on FCs for AYAs with cancer. <b><i>Methods:</i></b> Following best practices, we conducted: (1) item identification, refinement, and generation; (2) translatability and reading level review; and (3) cognitive interviews. Items were reviewed by five AYAs in each round of cognitive interviews. <b><i>Results:</i></b> A systematic search yielded 63 measures and 873 items. Fifty items were subsequently modified to enhance clarity and relevance, representing subdomains of psychological and social/relational FC. Flesch-Kincaid analysis found 31 items written above the 6th grade level, which were subsequently revised. Translatability review resulted in the modification of 3 items. During cognitive interviews, 76% of AYAs found items easy to answer with 52% describing them as \"very easy\" and 24% as \"somewhat easy.\" Sixty percent of participants indicated the items captured their experiences. The majority of those who reported items only somewhat reflected or did not reflect their experiences suggested items were simply not applicable for their particular case. <b><i>Conclusion:</i></b> This study is a critical step toward the foundation for an FC measurement system that is reliable, flexible, developmentally appropriate, comprehensible, translatable, and interpretable. Subsequent steps include psychometric testing to examine the construct validity and reliability of the FC items and calibration to enable the application of computer-adaptive testing and short form development. The evaluation will include potential item response bias by age range, gender identity, and race/ethnicity.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-08-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142004276","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}