Journal of Cancer Survivorship最新文献

{"title":"Return to work after neoadjuvant versus adjuvant immunotherapy in stage III melanoma patients.","authors":"J M Lijnsvelt, Z Lievense, E A C Albers, M Lopez-Yurda, L V van de Poll-Franse, C U Blank","doi":"10.1007/s11764-025-01825-1","DOIUrl":"https://doi.org/10.1007/s11764-025-01825-1","url":null,"abstract":"<p><strong>Purpose: </strong>Neoadjuvant immunotherapy in stage III melanoma has recently been shown to improve event-free and distant metastasis-free survival compared to adjuvant therapy. Pathologic response allows for subsequent personalization of surgery and omission/application of adjuvant therapy. We addressed the question whether neoadjuvant therapy allows an earlier and more to a more extent return to work in this curatively treated patient population.</p><p><strong>Methods: </strong>In this single-center retrospective analysis of patients participating at the Netherlands, we interviewed via the telephone 88 stage III melanoma patients treated with neoadjuvant versus adjuvant immunotherapy in regards of their stopping work during therapy, and when returning partially or fully to work.</p><p><strong>Results: </strong>Six, 12, and 24 months post start of therapy at least partially worked 80% versus 61%, 84% versus 73%, and 91% versus 82% in the neoadjuvant versus adjuvant groups. Full return to work was observed at 6 months in 52% versus 48%, at 1 year in 71% versus 52%, and at 2 years 82% versus 62%, respectively. Return to work (RTW) started in general in both groups after finishing the systemic therapies.</p><p><strong>Conclusions: </strong>Our data suggest that the manner of therapy (neoadjuvant versus adjuvant) and potentially its treatment duration might be major factors influencing the timing and extent of RTW.</p><p><strong>Implications for cancer survivors: </strong>A faster and full RTW is not only of importance for the patient's well-being and QoL, but has also a significant financial impact on patients and their families.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":""},"PeriodicalIF":3.1,"publicationDate":"2025-05-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144142499","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Prevalence and trends of cancer-related daily life limitations among gastrointestinal cancer survivors.","authors":"Azza Sarfraz, Abdullah Altaf, Mujtaba Khalil, Zayed Rashid, Shahzaib Zindani, Areesh Mevawalla, Timothy M Pawlik","doi":"10.1007/s11764-025-01833-1","DOIUrl":"https://doi.org/10.1007/s11764-025-01833-1","url":null,"abstract":"<p><strong>Purpose: </strong>The number of gastrointestinal (GI) cancer survivors has increased substantially due to improvements in early detection and treatment, yet long-term functional patient outcomes remain poorly characterized. We sought to quantify the burden of activity limitations (AL) and functional limitations (FL) among GI cancer survivors compared with non-GI cancer survivors and the general U.S. population, as well as identify key predictors of cancer-related limitations.</p><p><strong>Methods: </strong>The National Health Interview Survey (NHIS), a nationally representative dataset (1997-2023), was queried to examine the prevalence and trends of cancer-related limitations among GI cancer survivors, non-GI cancer survivors, and the general U.S.</p><p><strong>Population: </strong>Multivariable logistic regression analyses identified independent predictors of AL and FL, adjusting for demographic and socioeconomic variables.</p><p><strong>Results: </strong>Among 5,513 GI cancer and 39,887 non-GI cancer survivors, 50.2% (Relative Risk [RR]: 1.23, 95% CI: 1.19-1.27) and 70.7% (RR: 1.07, 95% CI: 1.05-1.09) of GI cancer survivors reported AL and FL, respectively, compared with non-GI cancer survivors. The general U.S. population had a markedly lower prevalence of AL (13.5%; RR: 0.33, 95% CI: 0.33-0.34) and FL (35.7%; RR: 0.54, 95% CI: 0.53-0.54). GI cancer survivors were older (mean age: 69.1 vs. 65.3 vs. 36.1 years), more often single (8.8% vs. 8.6% vs. 28.3%), and more frequently received public insurance (75.1% vs. 68.9% vs. 27.4%) compared with non-GI cancer survivors and the general population (p < 0.05). In multivariable analysis, GI cancer survivors had 21% higher odds of AL (OR: 1.21, 95% CI: 1.11-1.32, p < 0.001) and 11% higher odds of FL (OR: 1.11, 95% CI: 1.00-1.19, p = 0.049).</p><p><strong>Conclusions: </strong>GI cancer survivors face a significantly higher burden of functional limitations, influenced by demographic and socioeconomic factors.</p><p><strong>Implications for cancer survivors: </strong>Addressing functional disparities through targeted rehabilitation and support services may improve long-term outcomes.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":""},"PeriodicalIF":3.1,"publicationDate":"2025-05-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144135900","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development and pilot of Trainers in Oncofertility Reproductive Communication and Health (TORCH) program.","authors":"Dona Jalili, Sondra Zabar, Jessica Rose, Ranjani Shah, Lauren Tancer, Bianca Augusto, Susan T Vadaparampil, Gwendolyn P Quinn","doi":"10.1007/s11764-025-01828-y","DOIUrl":"https://doi.org/10.1007/s11764-025-01828-y","url":null,"abstract":"<p><strong>Purpose: </strong>To evaluate outcomes from the Trainers in Oncofertility Reproductive Communication and Health (TORCH) program, which trains Allied Health Professionals (AHPs) to become leaders in counseling AYA cancer patients on reproductive health.</p><p><strong>Methods: </strong>ECHO-TORCH was developed for alumni of the Enriching Communication Skills for Health Professionals in Oncofertility (ECHO) program. It included web-based modules on evidence-based content, adult learning principles, and a simulation exercise for skill practice. Evaluation involved pre/post-tests, skills assessments during simulation via standardized learners (SLs) and faculty observers, and online focus groups.</p><p><strong>Results: </strong>ECHO-TORCH learners (n = 10) showed improved knowledge, from 76% on pre-test to 86% on post-test (p < 0.01). Both SLs (86%) and faculty observers (90%) showed high likelihood of inviting learners back for future presentations. In online focus groups, participants described the modules as clear, relevant, and highly satisfying. Learners appreciated the opportunity for practice and structured review of the ECHO content.</p><p><strong>Conclusions: </strong>The ECHO-TORCH program improved AHPs' knowledge and skills in teaching reproductive health content to AYA cancer patients. The train-the-trainer model empowers AHPs to disseminate knowledge within their institutions, ultimately improving care quality and empowering AYA patients to make informed decisions about reproductive health.</p><p><strong>Implications for cancer survivors: </strong>Continued development of professionals in reproductive healthcare will significantly enhance cancer survivors' quality of life by supporting informed decision-making regarding their reproductive health.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":""},"PeriodicalIF":3.1,"publicationDate":"2025-05-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144142495","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Awareness and utilization of genetic testing for hereditary cancers in cancer survivors: a cross-sectional 2021 HINTS-SEER study.","authors":"Kirithiga Ramalingam, Stephen Li, Meg McKinley, Robin C Vanderpool, Sarah H Nash, Salma Shariff-Marco, Aaron Scheffler, Erin L Van Blarigan, Mindy C DeRouen","doi":"10.1007/s11764-025-01823-3","DOIUrl":"https://doi.org/10.1007/s11764-025-01823-3","url":null,"abstract":"<p><strong>Purpose: </strong>We aimed to identify factors associated with genetic testing awareness and use among a large sample of US cancer survivors participating in NCI's Health Information National Trends Survey of cancer survivors identified through the Surveillance, Epidemiology, and End Results program, a unique pilot study expanding the number of cancer survivors typically captured by HINTS.</p><p><strong>Methods: </strong>We analyzed 2021 HINTS-SEER data to determine sociodemographic factors associated with awareness and utilization of germline genetic testing using survey-weight-adjusted multivariable logistic regression.</p><p><strong>Results: </strong>Of 1232 survivors (any site), the majority had breast (23%) or prostate (23%) cancer. Among the overall study population, 77% were aware of and 24% utilized genetic testing. Females and those with a college education, income over $100,000, or family history of cancer had greater odds of awareness compared to males, those with less than college education, income under $20,000, or no family history, respectively. Among prostate cancer survivors, those ≥ 65 years in age had lower odds of awareness. Females and the privately insured had greater odds of utilization compared to males and publicly insured, respectively. Those ≥ 65 years or retired had lower odds of utilization compared to < 65 years and being employed, respectively.</p><p><strong>Conclusion: </strong>We identified sociodemographic factors associated with awareness and utilization of germline genetic testing among cancer survivors. Findings warrant further investigation to understand mechanisms underlying disparities in awareness and use of genetic testing.</p><p><strong>Implications for cancer survivors: </strong>This study highlights cancer survivor populations that may require additional support around awareness of and use of germline genetic testing.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":""},"PeriodicalIF":3.1,"publicationDate":"2025-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144127436","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Assessing the perceived usefulness and impact of a sexual health consultation service for female patients in a comprehensive cancer center.","authors":"Marion Aupomerol, Jean Zeghondy, Patricia Pautier, Alessandro Viansone, Anna Ilenko, Florian Scotte, Ines Vaz-Luis, Maria Alice Franzoi","doi":"10.1007/s11764-025-01827-z","DOIUrl":"https://doi.org/10.1007/s11764-025-01827-z","url":null,"abstract":"<p><strong>Purpose: </strong>Cancer and its treatments significantly impact women's sexual health, yet addressing sexual concerns remains inconsistent. This study aimed to evaluate the implementation of a sexual health consultation service for female patients undergoing cancer treatment or follow-up care, and assess patient perceptions of its usefulness.</p><p><strong>Methods: </strong>In November 2020, a sexual health consultation service was introduced at Gustave Roussy. Between November 2020 and February 2022, a survey was distributed to female patients who utilized the service. It assessed experiences, the perceived value of the consultation, resources provided, and improvements in sexual health post-consultation.</p><p><strong>Results: </strong>Of 153 surveys, 119 responses were received (77.8% response rate). The sexual health consultation was deemed useful by 87.4% of the participants and 74% found the resources helpful. Common concerns included vulvo-vaginal dryness (76%), dyspareunia (67%), and hypoactive desire (47%). After the consultation, 44% reported improvements in vaginal dryness. Furthermore, 44.5% felt more comfortable discussing sexual health concerns with other healthcare providers, and 46% felt more at ease discussing these issues with their partner.</p><p><strong>Conclusions: </strong>The high-perceived usefulness of the sexual health consultation, coupled with significant improvements in symptoms and communication skills, demonstrates the feasibility and value of integrating sexual health consultations into cancer care.</p><p><strong>Implications for cancer survivors: </strong>This approach enhances patient support and addresses an essential aspect of comprehensive cancer care, promoting a holistic focus on the well-being of cancer survivors.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":""},"PeriodicalIF":3.1,"publicationDate":"2025-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144086262","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Correction: Patient-reported outcome measures and physical function following head and neck lymphedema - a systematic review.","authors":"Katrina Gaitatzis, Belinda Thompson, Fiona Tisdall Blake, Louise Koelmeyer","doi":"10.1007/s11764-025-01831-3","DOIUrl":"https://doi.org/10.1007/s11764-025-01831-3","url":null,"abstract":"","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":""},"PeriodicalIF":3.1,"publicationDate":"2025-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144078414","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Financial burden of high-cost immunotherapy among cancer survivors in Medicare.","authors":"Kelsey M Owsley, Cathy J Bradley","doi":"10.1007/s11764-025-01797-2","DOIUrl":"https://doi.org/10.1007/s11764-025-01797-2","url":null,"abstract":"<p><strong>Purpose: </strong>Cancer survivors often experience significant financial hardship, which is exacerbated by the rising costs of novel immunotherapies. This study examined the association between financial hardship and receipt of high-cost immunotherapy among cancer survivors.</p><p><strong>Methods: </strong>We used data from the 2010-2020 Health and Retirement Study linked to Medicare Part B and D claims to examine cancer survivors aged 65 and older who received infusion and oral immunotherapy. Adjusted linear probability models assessed the relationship between high-cost treatment and key outcomes, including reported debt, inability to afford medical care, reduced medication use due to cost, and high out-of-pocket expenses.</p><p><strong>Results: </strong>Among all cancer survivors, we found that high-cost immunotherapy significantly increased the likelihood of financial hardship, including a 7.2 percentage point (pp) increase in the inability to afford medical care (95% confidence intervals (CI), - 0.011 to 0.156; P = 0.089). Blood cancer survivors experienced greater financial hardship than those with solid tumor cancers. Specifically, blood cancer survivors experienced a 23.8 pp (CI, 0.013 to 0.463; P = 0.038) increase in the inability to afford medical care and a 42.7 pp (CI, 0.148 to 0.706; P = 0.003) increase in taking fewer medications than prescribed.</p><p><strong>Conclusions: </strong>High-cost immunotherapy increased the risk of cancer survivors reporting an inability to afford care and taking fewer medications due to cost. Blood cancer survivors were more likely to report financial hardship compared to those diagnosed with solid tumors.</p><p><strong>Implications for cancer survivors: </strong>These results underscore the need for interventions to alleviate economic burdens and improve access for patients receiving high-cost cancer treatments.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":""},"PeriodicalIF":3.1,"publicationDate":"2025-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144078416","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"What can we learn from the evidence of psychosocial support for carers of people with cancer and how do we advance our efforts? A meta-review study.","authors":"Brona Nic Giolla Easpaig, Bronwyn Newman, Judith Johnson, Rebekah Laidsaar-Powell, Ursula M Sansom-Daly, Lucy Jones, Lukas Hofstätter, Eden G Robertson, Stephen Mears, Kabir Sattarshetty, Rachel E Houweling, Rhiannon Edge, Joanne Cummings, Reema Harrison","doi":"10.1007/s11764-025-01802-8","DOIUrl":"https://doi.org/10.1007/s11764-025-01802-8","url":null,"abstract":"<p><strong>Purpose: </strong>Literature concerning programmes to support the well-being of carers of cancer survivors is vast, complex, and difficult to navigate, posing difficulties for identifying and translating relevant evidence. This study will advance the field by mapping and synthesising reviews to address the question: \"What psychosocial interventions are available to promote the well-being of carers for people diagnosed with cancer, as reported in the evidence from reviews?\".</p><p><strong>Methods: </strong>A meta-review was conducted of reviews published between 2013 and 2024. PsycINFO, MEDLINE, CINAHL, and Cochrane Database of Systematic Reviews databases and relevant reference lists were searched for eligible reviews. Records were screened and assessed in accordance with the method with data from included reviews extracted and synthesised. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis guided reporting. Reviews were appraised using the JBI Critical Appraisal Checklist for Systematic Reviews and Research Syntheses.</p><p><strong>Results: </strong>Ultimately, 54 reviews met the inclusion criteria. This evidence was mapped regarding populations, interventions, and outcomes, including depression, anxiety, quality of life, and distress. On average, reviews addressed nine of 11 quality checklist items. Insights were gained concerning the role of theory, carer populations, and intervention characteristics.</p><p><strong>Conclusion: </strong>Key features of the body of evidence were identified that can hinder progress and which point to ways forward. It is concluded that a recalibrated carer research agenda is needed, one that is designed to synthesise evidence concerning what works, for which carers to achieve what outcomes, or to address which kinds of psychosocial support needs.</p><p><strong>Implications for cancer survivors: </strong>Despite the need to ensure that carers have access to programs that support their wellbeing as they care for their loved ones, the evidence to guide program development is complex and difficult to navigate. A refocusing of research efforts is needed to advance understanding of what is most effective for carers, and how this can be translated into clinical practice.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":""},"PeriodicalIF":3.1,"publicationDate":"2025-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144086265","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Cardiovascular disease in adolescent and young adult survivors of non-Hodgkin lymphoma in Korea.","authors":"Keun Hye Jeon, Danbee Kang, Dong Wook Shin, Hyunsoo Kim, Hea Lim Choi, Sang Eun Yoon, Hyunkyung Park, Su-Min Jeong, Juhee Cho","doi":"10.1007/s11764-025-01816-2","DOIUrl":"https://doi.org/10.1007/s11764-025-01816-2","url":null,"abstract":"<p><strong>Purpose: </strong>Long-term cardiovascular risk in adolescent and young adult (AYA) survivors of non-Hodgkin lymphoma (NHL) remains insufficiently characterized. This retrospective cohort study investigated the incidence of cardiovascular disease (CVD) among AYA survivors of NHL.</p><p><strong>Methods: </strong>We identified 4553 individuals aged 15-39 years diagnosed with NHL between 2006 and 2019 using the Korean National Health Insurance System database. A control group of 13,659 individuals without a history of cancer or CVD was selected using 1:3 matching based on age, sex, and residential area. The primary outcomes were major adverse cardiovascular events such as myocardial infarction, cardiomyopathy, heart failure, ischemic stroke, and hemorrhagic stroke. Hazard ratios (HRs) and 95% confidence intervals (CIs) were estimated using Cox proportional hazard models.</p><p><strong>Results: </strong>The mean (SD) age of the participants was 29.5 (6.8) years, and 59% were male. Over a median follow-up of 6.5 years, survivors of NHL had significantly higher risks of cardiomyopathy (HR 6.77; 95% CI 3.44-13.33), heart failure (HR 4.90; 95% CI 3.45-6.97), and hemorrhagic stroke (HR 3.14; 95% CI 1.75-5.65), compared to controls. In the subgroup analyses stratified by treatment modality, the highest risks were observed among patients who underwent hematopoietic stem cell transplantation, which involved high-dose chemotherapy with or without radiotherapy. The risk of myocardial infarction and ischemic stroke did not increase significantly.</p><p><strong>Conclusion: </strong>AYA survivors of NHL had a significantly higher risk of CVD, including cardiomyopathy, heart failure, and hemorrhagic stroke, than the general population.</p><p><strong>Implications for cancer survivors: </strong>Long-term cardiovascular surveillance is essential for AYA survivors of NHL, particularly those receiving intensive treatment.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":""},"PeriodicalIF":3.1,"publicationDate":"2025-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144078406","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Right out of the gate: a mixed method study on the needs and priorities of individuals with or at risk of breast cancer-related lymphedema.","authors":"Mona M Al Onazi, Joanna F Parkinson, Badr El Bakkali El Kasmi, Diane Martin, Susan Stratford, Emily Haws, Stéphanie Bernard, Anna Kennedy, Naomi D Dolgoy, David Keast, Margaret L McNeely","doi":"10.1007/s11764-025-01800-w","DOIUrl":"https://doi.org/10.1007/s11764-025-01800-w","url":null,"abstract":"<p><strong>Background: </strong>Clinical practice guidelines aim to standardize care and improve patient outcomes; however, they often lack input from patients themselves. Integrating the perspectives of individuals with lived experience ensures guidelines align with patient needs and priorities.</p><p><strong>Purpose: </strong>This study is part of the update to the Canadian Clinical Practice Guideline for breast cancer-related lymphedema (BCRL). Our goal was to identify the priority questions of individuals living with breast cancer to inform the development of guideline recommendations. The secondary aims were to identify the concerns, and barriers and facilitators to accessing lymphedema care.</p><p><strong>Methods: </strong>A mixed-methods study design was employed using a Canada-wide cross-sectional survey and focus group discussions. Qualitative data were analyzed using inductive thematic analysis.</p><p><strong>Results: </strong>A total of 137 participants with breast cancer completed the online survey, with 112 (81.8%) reporting BCRL. Six priority questions were identified: (i) What is my individual risk for BCRL? (ii) How can I lower my chances of developing BCRL? (iii) Do I have lymphedema? (iv) What are the effective treatment options for BCRL? (v) How can I best self-manage my lymphedema over the longer term? and (vi) How should my lymphedema be monitored over time? Participants expressed concern over developing or worsening of BCRL, and highlighted inconsistencies in care across Canada. Qualitative analyses revealed three themes: empowering patients, supporting self-management, and creating a surveillance plan/roadmap for lymphedema care.</p><p><strong>Conclusion: </strong>The findings will be used to guide patient-level clinical recommendations and knowledge translation tools. Addressing barriers may further a more equitable approach to patient-centered care.</p><p><strong>Implications for cancer survivors: </strong>Involving individuals with lived experience of breast cancer in guideline development and decision-making ensures that recommendations are truly reflective of the priorities of individuals affected by the condition. The overarching themes will support actionable strategies that align with the needs and priorities of individuals with breast cancer.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":""},"PeriodicalIF":3.1,"publicationDate":"2025-05-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144011284","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}