Journal of Cancer Survivorship最新文献

{"title":"Can prosthodontic rehabilitation support social eating and return to work in head and neck cancer survivors? A scoping review.","authors":"Audrey Brodeur, Normand Bach, Aisha Zerbo, Richard Hovey, Amal Idrissi Janati","doi":"10.1007/s11764-025-01861-x","DOIUrl":"10.1007/s11764-025-01861-x","url":null,"abstract":"<p><strong>Purpose: </strong>Oral dysfunction following head and neck cancer (HNC) treatment is a significant barrier for survivors attempting to return to work. Prosthodontic rehabilitation, including the replacement of missing teeth, plays a crucial role in restoring oral functions and addressing social eating, aesthetics, and functional limitations, potentially aiding survivors' re-entry into the workforce. This scoping review aims to map literature exploring the role of prosthodontic rehabilitation in facilitating social eating and return to work in HNC survivors.</p><p><strong>Methods: </strong>We systematically searched MEDLINE, CINAHL, and PsycINFO databases up to February 15, 2024, for studies on return to work or social eating in HNC survivors, with a focus on tooth loss and prosthodontic rehabilitation post-treatment. An updated search was conducted on June 11, 2025.</p><p><strong>Results: </strong>Thirteen studies were eligible, including four qualitative and nine quantitative works. Findings indicate a lack of studies directly linking prosthodontic rehabilitation to return to work and social eating. Limited quantitative data suggest that HNC survivors with dental prostheses, particularly implant-supported dentures, report fewer difficulties with social eating and employment compared to non-users. Qualitative data show that survivors value prosthodontic rehabilitation, particularly once their cancer is under control.</p><p><strong>Conclusions: </strong>While limited, available evidence suggests that prosthodontic rehabilitation improves HNC survivors' social eating, self-confidence, and quality of life, facilitating re-entry into the workforce. Implant-supported prostheses appear to offer better outcomes, enhancing social interactions and food choices.</p><p><strong>Implications for cancer survivors: </strong>Functional dental prostheses enhance self-confidence in public eating and social interactions, highlighting their role in long-term well-being and survivorship.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":"1248-1261"},"PeriodicalIF":3.4,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13676641/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144768696","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Are guidelines guiding? A mixed methods study examining the integration of ASCO fertility discussion guidelines in practice among oncologists and adolescents and young adults at an NCI-designated Comprehensive Cancer Center.","authors":"Julia Stal, Serena Y Yi, Charleen I Roche, David R Freyer, Sue E Kim, Joel E Milam, Gino K In, Kimberly A Miller","doi":"10.1007/s11764-025-01850-0","DOIUrl":"10.1007/s11764-025-01850-0","url":null,"abstract":"<p><strong>Purpose: </strong>This study aims to explore the integration of American Society of Clinical Oncology (ASCO) guidelines for fertility discussion in clinical practice.</p><p><strong>Methods: </strong>A concurrent triangulation mixed methods design was used. We recruited oncologists from an NCI-designated Comprehensive Cancer Center who treat adolescents and young adults (AYAs) at risk for infertility to participate in a semi-structured qualitative interview and conducted a thematic analysis. Simultaneously, self-report fertility-related data were collected from AYAs (age 18-39) diagnosed at the same institution via self-report survey and were analyzed using descriptive statistics.</p><p><strong>Results: </strong>Themes reported by oncologists (N = 12; 66.7% female, on average in practice for 14.3 years) included a lack of oncofertility-related training and limited knowledge surrounding fertility discussion guidelines. Those who were aware of guidelines stated that they informed their discussions. Oncologists' perceptions of fertility discussion guidelines were largely positive, though reservations were expressed. Discussions were primarily informed by patient needs and research/literature, but seldom by oncologists' explicit training or experience in oncofertility. Among AYAs (N = 58; 53.5% female, 35.1% Hispanic, on average 32.0 years at diagnosis), 82.3% had a fertility discussion, 62.6% of which occurred with their oncologist. Fertility discussions occurred at some visits (66.7%), and AYAs were very (39.4%) or moderately (27.3%) satisfied with counseling received. Components of ASCO guidelines most often discussed were the timing of preservation and consideration of individual factors in fertility preservation (66.7% each). Patient advocacy resources (33.3%) and informing them that their cancer history does not increase risk of cancer or birth defects in a child (30.3%) were least often discussed.</p><p><strong>Conclusion: </strong>Awareness of fertility discussion guidelines among oncologists was low, and more than half of AYAs reported only two components of ASCO guidelines were included in fertility discussions with their oncologists. Despite this, AYAs' overall satisfaction with discussions was moderate to high, suggesting adherence to all guideline components may not be necessary for AYAs to derive benefit. While oncologists reported largely positive perceptions of fertility discussion guidelines, several shared that the guidelines themselves may hinder implementation if they do not capture diverse patient scenarios and/or are outdated.</p><p><strong>Implications for cancer survivors: </strong>Findings suggest a need to improve oncologists' knowledge surrounding guidelines, refine recommendations to optimize oncofertility counseling, and subsequently improve their integration in practice to ensure AYAs are provided with desired and actionable information to support goal-concordant reproductive decisions.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":"663-688"},"PeriodicalIF":3.4,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13008573/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144325892","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"Let's talk about risk\": co-designing a pathway to assess, communicate and act on individual risk of long-term toxicities after breast cancer.","authors":"Maria Alice Franzoi, Carlota Santolaya, Elise Martin, Leonor Fasse, Pascal Rouby, Marie Sophie Minot-This, Antonio Di Meglio, Ines Vaz-Luis","doi":"10.1007/s11764-025-01826-0","DOIUrl":"10.1007/s11764-025-01826-0","url":null,"abstract":"<p><strong>Purpose: </strong>Survivors of breast cancer (BC) may endure significant and persistent post-treatment burdens that negatively impact overall quality of life. We previously developed risk prediction algorithms to identify individual patient profiles at increased risk for long-term toxicities. To prepare for the implementation of these risk algorithms in routine care, we performed a study to assess preferences, catalysts, and barriers concerning communication of individual risk of long-term BC toxicities. The goal was to co-design a pathway for risk assessment, communication, and management starting at diagnosis.</p><p><strong>Methods: </strong>A co-design study was performed using a participatory research framework and qualitative methods. Two phases of focus groups (FG) were conducted to assess the perspective of patients and providers through an iterative process of Exploration, Consultation, Prioritization, Integration and Co-design. Discussions were guided by four main questions: Who should communicate the risk? When should the risk be communicated? How should the risk be communicated? What information should be communicated, and care proposed?. FG discussions were recorded, pseudo-anonymized, transcribed and evaluated through a thematic content analysis. Results were reported following the consolidated criteria for reporting qualitative research (COREQ).</p><p><strong>Results: </strong>Six FG were conducted between July 2022 and August 2023, with a total of 28 participants (8 patients and 20 providers). Results revealed a strong willingness to discuss the risk of long-term toxicities, particularly for patients who would present with a higher risk of toxicities. However, this willingness was contingent on the implementation of supportive care pathways that offer personalized communication strategies and risk mitigation approaches tailored to each patient's need.</p><p><strong>Conclusions: </strong>This study found that both patients and providers are interested in, and willing to engage in, the assessment, communication and mitigation of long-term toxicities from the time of diagnosis. To address this need in routine care, a tailored pathway was co-designed and will undergo formal testing in a hybrid Type 3 effectiveness/implementation clinical trial (NCT06479057).</p><p><strong>Implications for cancer survivors: </strong>This study assessed the needs, preferences and expectations of patients and providers for implementing a care pathway to assess, communicate and mitigate the risk of long-term toxicities after breast cancer treatment using risk prediction algorithms.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":"593-605"},"PeriodicalIF":3.4,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13676503/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144274999","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","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":"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":"375-384"},"PeriodicalIF":3.4,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13676644/pdf/","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":"OA","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":"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":"347-356"},"PeriodicalIF":3.4,"publicationDate":"2026-08-01","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":"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":"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":"305-317"},"PeriodicalIF":3.4,"publicationDate":"2026-08-01","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}

{"title":"The impact of financial toxicity on quality of life for survivors of primary brain tumour.","authors":"Jasmine Luttrell, Katarzyna Lion, Mark B Pinkham, Louisa G Collins, Tamara Ownsworth","doi":"10.1007/s11764-025-01814-4","DOIUrl":"10.1007/s11764-025-01814-4","url":null,"abstract":"<p><strong>Purpose: </strong>Despite the well-known impacts of financial hardship on cancer survivors, financial toxicity experienced in the context of brain tumour has received little attention. This study examined factors related to financial toxicity, and associations between financial toxicity, anxiety and quality of life (QoL) in this population.</p><p><strong>Method: </strong>Adults with primary brain tumour were recruited from hospital and community services as part of a telehealth psychological intervention study. They completed a telephone cognitive screener at pre-intervention, and the Comprehensive Score for Financial Toxicity-Functional Assessment of Chronic Illness Therapy (COST-FACIT), Generalised Anxiety Disorder-7 (GAD-7) and Functional Assessment of Cancer Therapy-Brain (FACT-Br) as part of a 6-week post-intervention assessment.</p><p><strong>Results: </strong>Sixty brain tumour survivors (60% female; M age = 47.90, SD = 14.47) participated. Most of the sample (57%) experienced mild to moderate financial toxicity. Individuals with high-grade glioma reported significantly higher levels of financial toxicity compared to those with benign brain tumour. Greater perceived symptoms, lower global cognitive status and higher anxiety symptoms were significantly associated with higher financial toxicity. Financial toxicity contributed significant unique variance in QoL (4.2%), controlling for covariates. Anxiety symptoms partially mediated the relationship between financial toxicity and QoL (β = 0.24, CI 0.03, 0.55).</p><p><strong>Conclusions: </strong>Higher levels of financial toxicity are related to tumour type (high-grade glioma), lower cognitive status, greater perceived symptoms and anxiety. Brain tumour survivors with higher financial toxicity are more likely to experience lower QoL, which may in part be related to greater anxiety symptoms.</p><p><strong>Implications for cancer survivors: </strong>Financial burden is associated with higher anxiety and lower quality of life for brain tumour survivors. These findings highlight the importance of early screening and access to personalised financial advice and support.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":"217-228"},"PeriodicalIF":3.4,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13676630/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143970782","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Changes in health behaviors and risk of depression after breast cancer diagnosis and treatment: a nationwide cohort study.","authors":"Wonyoung Jung, Kyungdo Han, Bongseong Kim, Jonghan Yu, Ji Hyun An, Hong Jin Jeon, Yong-Moon Mark Park, Dong Wook Shin","doi":"10.1007/s11764-025-01794-5","DOIUrl":"10.1007/s11764-025-01794-5","url":null,"abstract":"<p><strong>Purpose: </strong>Protective lifestyle behaviors could potentially mitigate the risk of depression in breast cancer survivors. This study examined the association between changes in key health behaviors and depression risk after breast cancer diagnosis and treatment.</p><p><strong>Methods: </strong>This nationwide cohort study assessed 30,523 breast cancer survivors without a prior history of depression, focusing on changes in weight, smoking habits, alcohol consumption, and physical activity from pre- to post-cancer diagnosis. The primary outcome was incident depression, with adjusted hazard ratios and confidence intervals calculated to consider potential confounders.</p><p><strong>Results: </strong>During an average follow-up of 5.3 years (160,755 person-years), lifestyle changes post-diagnosis included decreases in smoking (2.8% to 0.9%) and alcohol consumption (24.9% to 7.5%) and an increase in physical activity (18.9% to 32.1%). Substantial weight gain (> 10%) was associated with a 27% elevated risk of depression compared to those who maintained weight. Both continuation and cessation of smoking were associated with increased depression risk compared to sustained non-smokers. Changes in alcohol consumption, either initiation or cessation, were associated with increased depression risk compared to sustained non-drinkers. Conversely, breast cancer survivors who became inactive post-diagnosis had a reduced risk of depression compared to those who remained inactive. Our exploratory analysis showed that regular physical activity prior to diagnosis was associated with a 7% lower risk of depression compared to inactivity.</p><p><strong>Conclusion: </strong>We observed that post-diagnosis weight gain exceeding 10%, sustaining or quitting smoking, starting or stopping alcohol consumption, and pre-diagnosis physical inactivity were all associated with an increased risk of depression in breast cancer survivors. Healthcare providers should support healthy behaviors to mitigate depression risk after breast cancer diagnosis and treatment.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":"114-125"},"PeriodicalIF":3.4,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143803399","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":"Healthcare professionals understanding, perceptions and experiences of head and neck lymphoedema to promote self-management for patients following completion of head and neck cancer treatment: a qualitative study.","authors":"Lauren J Mullan, Nicole E Blackburn, Jackie Gracey, Lynn Dunwoody, Jill Lorimer, Cherith J Semple","doi":"10.1007/s11764-025-01868-4","DOIUrl":"10.1007/s11764-025-01868-4","url":null,"abstract":"<p><strong>Purpose: </strong>Head and neck lymphoedema (HNL) is a chronic and often debilitating consequence of head and neck cancer (HNC) treatment. Despite the chronicity, it is often under-recognised and under-treated. There is a finite resource of specialists to provide HNL intervention, necessitating self-management as an important pillar of patient management. This study aims to explore healthcare professionals (HCPs) understanding, perceptions and experiences of HNL management to promote self-management and adherence to HNL interventions in patients following completion of HNC treatment.</p><p><strong>Methods: </strong>Eight focus groups were conducted with HCPs (n = 39) from different professional disciplines, acute and community settings and countries. Reflexive thematic analysis was adhered to in the development of key themes using an inductive approach.</p><p><strong>Results: </strong>Two main themes were established: (1) 'Raising awareness of HNL as a chronic and complex condition' and (2) 'What are the solutions for promoting HNL self-management?' Data demonstrated that HCPs lack confidence and understanding in providing HNL support. There was a lack of clarity towards roles and responsibilities of HNL management among HCPs, with many having a desire to be better equipped to promote patient self-management and adherence.</p><p><strong>Conclusion: </strong>HCPs involved in care delivery of patients with HNC require education and training on HNL, to support patient and family engagement with HNL self-management. To advance adherence and compliance of HNL self-management, there is a need to develop a dedicated HNL self-management intervention, integrating theory and evidence.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":"810-822"},"PeriodicalIF":3.4,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13676533/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144649593","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The e-QuoL project: enhancing long-term follow-up care for childhood cancer survivors through digital innovation, results of an exploratory questionnaire.","authors":"Romane Requier, Clara Gimenez, Monica Muraca, Päivi M Lähteenmäki, Anne-Sophie Gresle, Louise Tram Henriksen, Beauchesne Marion, Gerfault Benoit, Kristen E T Thornton, Charlotte Demoor-Goldschmidt","doi":"10.1007/s11764-025-01854-w","DOIUrl":"10.1007/s11764-025-01854-w","url":null,"abstract":"<p><strong>Purpose: </strong>Childhood, adolescent, and young adult cancer survivors represent a growing population with unique long-term follow-up (LTFU) needs, including managing late effects of treatment and ensuring psychosocial well-being. The e-QuoL project aims to develop digital tools tailored to enhance survivorship care.</p><p><strong>Method: </strong>An online survey comprising 424 questions was distributed across 16 European countries. The distribution plan ensured engagement from diverse stakeholders, including patients, parents, and healthcare professionals. Descriptive and thematic analyses of survey data identified key content, functionalities, and features for the design of such tools.</p><p><strong>Results: </strong>For participants (n = 53), the inclusion of a follow-up plan for the risk of sequelae in the first 5 years of follow-up was the highest priority (mean score, 9.62). Supportive care items were deemed important. In terms of functionalities, the most highly rated was the ability to send reminders to patients to not forget exams (mean score, 9.25). The inclusion of an algorithm to propose follow-up plans based on selected sections was also particularly valued (mean score, 9.10). Finally, the user experience of digital tools, including the need for these tools to be engaging, easy to use, and customizable, was highlighted by 66.7% of participants.</p><p><strong>Conclusion: </strong>This study emphasizes the need for customizable, accessible, and user-centered digital tools to bridge disparities in LTFU care. Collaborative efforts to address technological, financial, and ethical barriers are essential to achieving equitable, effective survivorship support.</p><p><strong>Implications for cancer survivors: </strong>By developing and implementing comprehensive digital tools, a more personalized, holistic, and effective model of survivorship care can be achieved.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":"846-858"},"PeriodicalIF":3.4,"publicationDate":"2026-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13676510/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144682657","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}