Journal of adolescent and young adult oncology最新文献

{"title":"Body Image Concerns in Adolescent and Young Adult Oncology Patients within Six Months of Upfront Diagnosis.","authors":"Paul R D'Alessandro, Meghan E McGrady, Jason M Nagata, Robin E Norris, Joseph G Pressey","doi":"10.1089/jayao.2024.0024","DOIUrl":"10.1089/jayao.2024.0024","url":null,"abstract":"<p><p>This cross-sectional study described prevalent body image (BI) concerns among adolescents and young adults (AYAs) with neoplasms who received treatment at a quaternary care children's hospital. Thirty-two AYAs, aged 15-39 years, completed questionnaires assessing BI within six months of diagnosis. The most frequently endorsed questionnaire items included the following: desire for increased physical fitness (62.5%), self-consciousness about hair (45.2%), weight dissatisfaction (40.6%), lack of strength (37.5%), wearing loose clothing to hide one's body (37.5%), decreased agility (34.4%), shape dissatisfaction (32.2%), and self-perception of too much body fat (31.3%). Awareness of AYA BI concerns during treatment may generate early intervention targeting this complex issue.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141160322","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":"Asking the \"Right\" Questions about Financial Hardship: Using Cognitive Interviews with Adolescents and Young Adults with Cancer and Their Caregivers to Inform Measure Development.","authors":"John M Salsman, Chandylen L Nightingale, Mollie R Canzona, Dianna S Howard, Reginald D Tucker-Seeley, Kimberly D Wiseman, David E Victorson, Joanna M Robles, Michael Roth, Regina Smith, Bryce B Reeve, Suzanne C Danhauer","doi":"10.1089/jayao.2024.0041","DOIUrl":"10.1089/jayao.2024.0041","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Financial hardship as a result of cancer treatment can have a significant and lasting negative impact on adolescents and young adults (AYAs) and their families. To address a lack of developmentally informed and psychometrically sound measures of financial hardship for AYAs and their caregivers, we used rigorous measurement development methods recommended by the National Institutes of Health's Patient-Reported Outcomes Measurement Information System® (PROMIS®) to determine comprehensibility and relevance of measure content. <b><i>Methods:</i></b> Our multi-step approach involved item identification, refinement, and generation; translatability and reading level review; and cognitive interviews. A purposive sample of 25 AYAs and 10 caregivers participated, ensuring representation across age, education, gender, race/ethnicity, and cancer type. <b><i>Results:</i></b> Fifty patient-reported and caregiver-reported items were developed across material, psychosocial, and behavioral subdomains of financial hardship. Translatability and reading level reviews resulted in 22 patient-reported and 25 caregiver-reported items being rewritten. Eighty-eight percent of patients and all caregivers described the items as easy to answer. Younger AYAs (15 to 25 years of age) were more likely to say the items were less relevant for them. Forty-six patient-reported and 48 caregiver-reported items were recommended for further testing. <b><i>Conclusion:</i></b> This study is the first to use in-depth qualitative methods to center AYA patient and caregiver experiences in the creation of new measures of financial hardship. Data support the comprehensibility and content validity of these preliminary item banks. Future large-scale, quantitative testing will lead to additional refinements and support the use of short forms and computer-adaptive testing for a diverse sample of AYAs and their caregivers.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141498108","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":"Clinical Practice Guideline-Inconsistent Management of Fertility Preservation in Pediatric Cancer Patients in Community Settings: A Children's Oncology Group Study.","authors":"Allison C Grimes, Aaron J Sugalski, Michelle M Nuño, Subhash Ramakrishnan, Melissa P Beauchemin, Paula D Robinson, Nancy Santesso, Alexandra M Walsh, Andrea R Wrightson, Lolie C Yu, Susan K Parsons, Lillian Sung, L Lee Dupuis","doi":"10.1089/jayao.2024.0022","DOIUrl":"10.1089/jayao.2024.0022","url":null,"abstract":"<p><p><b><i>Background:</i></b> The primary objective was to measure adherence to clinical practice guideline (CPG) recommendations for fertility preservation (FP) in pediatric cancer patients treated in National Cancer Institute Community Oncology Research Program (NCORP) sites. Secondary objectives were to describe factors such as site size associated with CPG-inconsistent care delivery and cryopreservation completion. <b><i>Methods:</i></b> This retrospective, multicenter study included patients 15 to 21 years old with a first cancer diagnosis from January 2014 through December 2015 who were previously enrolled to a Children's Oncology Group (COG) study and received care at a participating NCORP site. Patients were randomly selected from a list generated by the COG for chart review by participating sites. Primary outcome was care delivery that was inconsistent with a strong CPG recommendation on FP, namely discussion and offering of FP options before cancer treatment initiation, as adjudicated centrally by a panel. <b><i>Results:</i></b> A total of 129 patients from 25 sites were included. Among these, 48% (62/129) received CPG-inconsistent care. Most CPG-inconsistent care was due to lack of FP discussion documentation (93.5%, 58/62). Small site size, treatment at a pediatric (vs mixed adult/pediatric) site, and female sex were associated with higher odds of CPG-inconsistent care delivery. <b><i>Conclusions:</i></b> Newly diagnosed pediatric cancer patients often received CPG-inconsistent care for FP, with disproportionate gaps noted for females, and those treated at smaller or pediatric NCORP sites. The primary reason for CPG-inconsistent care is lack of FP discussion from clinicians. Opportunities to improve FP CPG implementation are highlighted.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141070577","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":"Perspectives of Health Care Providers on Peer Support for Adolescents with Cancer in Pediatrics.","authors":"Danielle R Weidman, Sandy Che-Eun Serena Lee, Philippe Desmarais, Katye Stevens, Christopher A Klinger, Heather Colquhoun, Jacqueline L Bender, Abha Gupta","doi":"10.1089/jayao.2023.0164","DOIUrl":"10.1089/jayao.2023.0164","url":null,"abstract":"<p><p>Health care providers (HCPs) play a key role in psychosocial care of adolescents with cancer (AWC) and present a unique perspective. This prospective study included a brief survey followed by an interview, seeking to understand HCPs' viewpoints on peer support needs of AWC. Participants were 10 multidisciplinary HCPs with 5-30 years of experience. Three key themes found were: observations made and relationships with AWC; challenges to providing support; and potential peer support interventions. HCPs want to provide peer support resources but lack adequate information. Next steps: interventions should include information dissemination to all HCPs caring for AWC.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140206967","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":"Emergency Department Use in Adolescent and Young Adult Cancer Early Survivors from 2006 to 2020.","authors":"Karen J Wernli, Eric C Haupt, Neetu Chawla, Thearis Osuji, Ernest Shen, Andrew B Smitherman, Mallory Casperson, Anne C Kirchhoff, Bradley J Zebrack, Theresa H M Keegan, Lawrence Kushi, Christopher Baggett, Heydon K Kaddas, Kathryn J Ruddy, Candice A M Sauder, Theodore Wun, Marlaine Figueroa Gray, Jessica Chubak, Hazel Nichols, Erin E Hahn","doi":"10.1089/jayao.2023.0174","DOIUrl":"10.1089/jayao.2023.0174","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Understanding emergency department (ED) use in adolescent and young adult (AYA) survivors could identify gaps in AYA survivorship. <b><i>Methods:</i></b> We conducted a cohort study of 7925 AYA survivors (aged 15-39 years at diagnosis) who were 2-5 years from diagnosis in 2006-2020 at Kaiser Permanente Southern California. We calculated ED utilization rates overall and by indication of the encounter (headache, cardiac issues, and suicide attempts). We estimated rate changes by survivorship year and patient factors associated with ED visit using a Poisson model. <b><i>Results:</i></b> Cohort was 65.4% women, 45.8% Hispanic, with mean age at diagnosis at 31.3 years. Overall, 38% of AYA survivors had ≥1 ED visit (95th percentile: 5 ED visits). Unadjusted ED rates declined from 374.2/1000 person-years (PY) in Y2 to 327.2 in Y5 (<i>p</i> change < 0.001). Unadjusted rates declined for headache, cardiac issues, and suicide attempts. Factors associated with increased ED use included: age 20-24 at diagnosis [relative risk (RR) = 1.30, 95% CI 1.09-1.56 vs. 35-39 years]; female (RR = 1.27, 95% CI 1.11-1.47 vs. male); non-Hispanic Black race/ethnicity (RR 1.64, 95% CI 1.38-1.95 vs. non-Hispanic white); comorbidity (RR = 1.34, 95% CI 1.16-1.55 for 1 and RR 1.80, 95% CI 1.40-2.30 for 2+ vs. none); and public insurance (RR = 1.99, 95% CI 1.70-2.32 vs. private). Compared with thyroid cancer, cancers associated with increased ED use were breast (RR = 1.45, 95% CI 1.24-1.70), cervical (RR = 2.18, 95% CI 1.76-2.71), colorectal (RR = 2.34, 95% CI 1.94-2.81), and sarcoma (RR = 1.39, 95% CI 1.03-1.88). <b><i>Conclusion:</i></b> ED utilization declined as time from diagnosis elapsed, but higher utilization was associated with social determinants of health and cancer types.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140865218","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":"Young Adult Cancer Survivors' Perspectives on Cancer's Impact on Different Life Areas Post-Treatment: A Qualitative Study.","authors":"Hannah Arem, Danielle A Duarte, Benjamin White, Katie Vinson, Pamela Hinds, Nathan Ball, Kyla Dennis, Darcey M McCready, Lauren A Cafferty, Carla J Berg","doi":"10.1089/jayao.2024.0021","DOIUrl":"10.1089/jayao.2024.0021","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Young adult cancer survivors experience disruptions in various life domains (e.g., relationships, academic/career) during and after treatment. This study examined life disruptions and related supports to update interventions to improve psychological outcomes. <b><i>Methods:</i></b> In April-July 2023, young adult survivors (<i>n</i> = 23) were recruited (via clinics, support groups, nonprofit organizations, etc.) to complete semi-structured interviews assessing cancer's impact across life domains, how they coped with related disruptions, and facilitators to improved psychosocial well-being. We used a dual deductive-inductive approach to develop a codebook and then coded transcripts in Dedoose. <b><i>Results:</i></b> This sample was on average 33.7 years old (standard deviation [SD] = 4.4), 78.3% female, 73.9% non-Hispanic White, 47.8% married/cohabitating, 2.4 (SD = 1.0) years post-diagnosis, 1.4 years (SD = 0.9) post-treatment, and largely diagnosed with breast cancer (52.1%) or leukemia/lymphoma (34.7%). The most salient themes related to disruptions included mental health, feelings of isolation during survivorship, and disruptions to career and relationships with family or partners. Participants reported challenges navigating these feelings and disruptions, and difficulty understanding and conveying their needs. Many experienced limited support for navigating cancer-related trauma and life disruptions as a survivor. Participants also reported some positive impacts, like reevaluating their values and goals or feeling resilient, and emphasized the need to identify supports, accept that life had changed because of cancer, and have their needs and continued struggles validated by others during survivorship. <b><i>Conclusions:</i></b> Young adults experience ongoing disruptions across multiple life domains, underscoring the need for integrated, longer-term psychosocial supports to help them navigate these disruptions and reevaluate their goals.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140860141","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 Not-So-Good Cancer: Psychosocial Challenges for YA Thyroid Cancer Patients and Survivors and the Creation of a YA Thyroid Cancer Support Group.","authors":"Sara L Lampert-Okin","doi":"10.1089/jayao.2024.0033","DOIUrl":"10.1089/jayao.2024.0033","url":null,"abstract":"<p><p>Thyroid cancer (TC) has been deemed \"the good cancer\" owing to its slow growth, availability of targeted treatment, and low mortality rates. Inconsistent with this name, survivors of TC have similar or poorer quality of life than individuals with other types of cancer. Furthermore, young adults (YAs; age 18-35) with TC are at risk for additional psychosocial challenges. Support groups have been identified as a mechanism for improving quality of life among other YAs with cancer. A YA TC group is warranted given the unique experiences of TC survivors. Discussion points from a newly developed YA TC support group are reviewed.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140848611","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":"Determinants of Decision Regret Regarding Fertility Preservation in Adolescent and Young Adult Cancer Survivors: A Systematic Review.","authors":"Hannah Kuntz, Jessica Santucci, Samantha Butts, Smita Dandekar, Gayle Smink, Lauren Jodi Van Scoy, Pooja Rao","doi":"10.1089/jayao.2023.0191","DOIUrl":"10.1089/jayao.2023.0191","url":null,"abstract":"<p><p>Given recent advances in cancer therapeutics, there is a growing population of adolescent and young adult (AYA) cancer survivors navigating the physical and psychological consequences of cancer treatment. Fertility preservation (FP) conversations are of increasing importance for these survivors. Decision regret (DR) is a measure of distress or remorse following a health care decision, and it is a useful tool to evaluate the impact of a treatment on quality of life. The aim of this systematic review is to culminate existing literature focused on determinants of FP DR among AYA cancer survivors and to propose future interventions to reduce DR among AYA cancer survivors. An electronic database search was performed using PubMed, Web of Science, and APA PsycINFO for articles published before December 2023 using the following search criteria: PubMed: <i>\"Fertility Preservation\"[Mesh]</i> AND <i>decision regret</i>, APA PsycINFO and Web of Science: <i>Fertility Preservation</i> AND <i>decision regret</i>. Articles were organized into five categories that emerged after initial review. Nineteen articles that focused on DR and FP in AYA cancer survivors aged ≤40 and ≥12 years were included. Article results were categorized into five categories pertaining to determinants of FP DR: <i>Unmet Informational and Emotional Needs</i>, <i>Need for Developmentally Appropriate Conversations</i>, <i>Insufficiency of Provider Training</i>, <i>Quality and Timeliness of Fertility Preservation Discussions</i>, and <i>Societal Barriers</i>. These results highlight the need for improved patient and provider education on FP, such as future longitudinal studies focused on standardization of FP-related protocols and the impact of their implementation on DR, especially for AYA cancer survivors.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140876518","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":"Implementing Mental Health Screening for Adolescent Hematology and Oncology Patients: A Quality Improvement Initiative.","authors":"Tara Sebastian, Allison Close, Clare DeVeau, Chad Fessenden, Chi Braunreiter","doi":"10.1089/jayao.2023.0125","DOIUrl":"10.1089/jayao.2023.0125","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Adolescents and young adults (AYA) with chronic illnesses experience an increase in mental health concerns. A mental health screening (MHS) process for hematology and oncology patients was implemented in a single institution. The quality improvement project was conducted to integrate a MHS process, educate providers about the importance of mental health in this patient population, and evaluate the process. <b><i>Methods:</i></b> The COM-B (capability, opportunity, motivation-behavior) model for behavior change was used to inform strategic planning and Plan-Do-Study-Act (PDSA) methodologies for process improvement. Retrospective chart reviews and surveys were conducted to determine missed screening rates and providers' perceptions, knowledge, attitudes, and skills of the MHS process. <b><i>Results:</i></b> Of 334 eligible patient encounters, the missed screening rate was 15.0%, the overall error rate of completing the screening was 3.8%, the error rate of completing the suicide or self-harm indicator was 2.6%, and the missed medical social worker touch point was 4.8%. <b><i>Conclusion:</i></b> The rising rates of mental health concerns in AYA hematology and oncology patients call for streamlined MHS processes to improve the identification of patients who may need intervention and services. Processes should be tailored to workflows and available resources. Future PDSA cycles will include providing dedicated nursing education and determining the cost needed to meet the rising mental health needs of the AYA hematology and oncology population.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140858991","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 Case for Pre-Treatment Sperm Banking as Standard of Care for All Post-Pubertal Males with Cancer.","authors":"Leena Nahata, Joshua A Halpern, Kara Bendle, Olivia Frias, Kyle Orwig, Joyce Reinecke, James F Smith, Terri Woodard, Jennifer Levine","doi":"10.1089/jayao.2024.0100","DOIUrl":"https://doi.org/10.1089/jayao.2024.0100","url":null,"abstract":"","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":null,"pages":null},"PeriodicalIF":1.2,"publicationDate":"2024-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142347052","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}