Hyun Jin Song, Hyun-Ju Seo, Eun Jeong Choi, Ji Sung Lee, Yumi Choi
{"title":"Nursing care services to address unmet supportive care needs among cancer survivors: a systematic review.","authors":"Hyun Jin Song, Hyun-Ju Seo, Eun Jeong Choi, Ji Sung Lee, Yumi Choi","doi":"10.1007/s11764-024-01661-9","DOIUrl":"https://doi.org/10.1007/s11764-024-01661-9","url":null,"abstract":"<p><strong>Background: </strong>The increasing population of cancer survivors poses a significant challenge for healthcare systems globally, necessitating comprehensive post-treatment care to address diverse physical, psychological, and social needs.</p><p><strong>Objective: </strong>This systematic review aims to synthesize and critically evaluate the current evidence concerning the unmet needs for nursing services among cancer survivors, spanning various dimensions of survivorship care.</p><p><strong>Methods: </strong>A systematic search was conducted across major databases, including PubMed, CINAHL, and PsycINFO, to identify relevant studies investigating the unmet needs and health-related quality-of-life (HRQOL) of nursing services led by nurses among cancer survivors. The final search update was conducted in June 2024. Unmet needs dimensions were categorized by the biopsychosocial-spiritual framework.</p><p><strong>Results: </strong>Of the 9503 records searched, 18 studies were included. This review revealed mixed findings in the domains of unmet needs and interventions aimed at addressing them. While nurse-led interventions showed promise in addressing physical and daily living needs, outcomes related to psychological and emotional needs varied across studies. Additionally, nurse-led interventions were effective in addressing patient-clinician communication and health system/information needs, although statistical significance was not consistently observed. HRQOL assessments using general and cancer-specific measures yielded mixed findings.</p><p><strong>Conclusions: </strong>Despite limitations of the risk of bias of included studies and weak study designs for evaluating nurse-led intervention effects for cancer survivors, the findings highlight the potential of nursing practice to significantly contribute to improving unmet needs of physical, psychological, and social perspectives and ultimately improving their HRQOL. However, the impact on the spiritual needs of nursing care services is limited by the low number of studies.</p><p><strong>Implications for cancer survivors: </strong>By providing comprehensive support and management, nursing practice can enhance post-treatment outcomes and HRQOL for cancer survivors, contributing to more patient-centered and effective care delivery. More rigorous research considering a biopsychosocial-spiritual perspective to help cancer survivors improve HRQOL is needed.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-09-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142140249","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}
Jente M Klok, Saskia F A Duijts, Vivian Engelen, Roel Masselink, Anne-Marie C Dingemans, Joachim G J V Aerts, Hester F Lingsma, David van Klaveren
{"title":"Experienced financial toxicity among long-term cancer survivors: results from a national cross-sectional survey.","authors":"Jente M Klok, Saskia F A Duijts, Vivian Engelen, Roel Masselink, Anne-Marie C Dingemans, Joachim G J V Aerts, Hester F Lingsma, David van Klaveren","doi":"10.1007/s11764-024-01668-2","DOIUrl":"https://doi.org/10.1007/s11764-024-01668-2","url":null,"abstract":"<p><strong>Purpose: </strong>Financial toxicity, the subjective distress caused by objective financial burden, significantly impacts cancer survivors. Yet, enduring effects on survivors remain unclear. Therefore, we investigated the experienced objective financial burden and subjective financial distress in long-term cancer survivors.</p><p><strong>Methods: </strong>A cross-sectional nationwide online survey of adult cancer survivors ≥ 5y after diagnosis were analyzed. Objective financial burden was measured via extra expenses and income loss, while subjective financial distress covered psychological well-being, coping and support-seeking behavior, and financial concerns. Groups were compared (i.e., having cancer vs. former patients) by t-tests and chi-squared tests. Financial toxicity was visualized with Sankey plots and sunburst diagrams.</p><p><strong>Results: </strong>4,675 respondents completed the survey, of whom 2,391 (51%) were ≥ 5y after their cancer diagnosis. Among them, 75% experienced income loss and/or extra expenses after diagnosis. One-third of the previously employed respondents relied on work disability benefits. Further, 'being unable to make ends meet' increased from 2% before diagnosis to 13% ≥ 5y after diagnosis (p < .001). Additionally, 58% reported negative psychological impacts of financial toxicity, and 47% worried about their financial future.</p><p><strong>Conclusions: </strong>Cancer survivors often face income loss and additional expenses, leading to ongoing financial difficulties that affect their psychological well-being. Despite this significant impact, there is a lack of guidance and support to help them manage these financial challenges. These findings highlight the need for healthcare professionals to recognize and address the financial challenges.</p><p><strong>Implications for cancer survivors: </strong>This study underscores the widespread financial challenges cancer survivors encounter, emphasizing the need for ongoing financial support and comprehensive assessments of their physical and psychological well-being.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-09-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142119944","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":"Recommendations on the surveillance and supplementation of vitamins and minerals for upper gastrointestinal cancer survivors: a scoping review.","authors":"Sim Yee Cindy Tan, Tiffany Tsoukalas, Kirsten Javier, Tiffany Fazon, Sheena Singh, Janette Vardy","doi":"10.1007/s11764-024-01666-4","DOIUrl":"https://doi.org/10.1007/s11764-024-01666-4","url":null,"abstract":"<p><strong>Background: </strong>Early-stage upper gastrointestinal (UGI) cancer patients, after surgery, have altered gastrointestinal functions, compromising their nutritional status and health outcomes. Nutritional care provision to UGI survivors rarely focuses on long-term survivorship. Here, we explore recommendations for surveillance of micronutrient deficiency and supplementation for UGI cancer survivors after surgery.</p><p><strong>Methods: </strong>A scoping review, based on the Joanna Briggs Institute methodology for scoping reviews. Six databases (Medline, Embase, CINAHL, Cochrane, Scopus, and PsycINFO) and 21 cancer-related organisation websites were searched. Publications between 2010 and March 2024 with recommendations aimed at adult UGI cancer (oesophageal, gastric, pancreatic, small bowel, and biliary tract) survivors were included.</p><p><strong>Results: </strong>Twenty-six publications met the selection criteria: 11 reviews (8 narrative reviews, 2 systematic, 1 meta-analysis), 7 expert opinions, 6 guidelines, and 2 consensus papers. Twenty-two publications recommended monitoring of micronutrient deficiencies, and 23 suggested supplementation, with 8 lacking details. Most were targeted at patients with gastric cancer (n = 19), followed by pancreatic cancer (n = 7) and oesophageal cancer (n = 3) with none for biliary tract and small bowel cancers. Vitamin B12 and iron were the most consistently recommended micronutrients across the three tumour groups.</p><p><strong>Conclusion: </strong>Limited publications recommend surveillance of micronutrient status in UGI cancer survivors during the survivorship phase, especially for oesophageal and pancreatic cancer survivors; most were narrative reviews. These recommendations lacked details, and information was inconsistent.</p><p><strong>Implications for cancer survivors: </strong>Long-term UGI cancer survivors are at risk of micronutrient deficiency after surgery. A standardised approach to prevent, monitor, and treat micronutrient deficiencies is needed.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142107857","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}
Nataly R Espinoza Suarez, Allison S Morrow, Christina M LaVecchia, Michèle Dugas, Valérie Carnovale, Andrea Maraboto, Montserrat Leon-Garcia, Miriam Lucar, Leslie C Hasset, Thierno Thierno Diallo, Sophie Dupéré, Annie LeBlanc
{"title":"Connected and supported: a scoping review of how online communities provide social support for breast cancer survivors.","authors":"Nataly R Espinoza Suarez, Allison S Morrow, Christina M LaVecchia, Michèle Dugas, Valérie Carnovale, Andrea Maraboto, Montserrat Leon-Garcia, Miriam Lucar, Leslie C Hasset, Thierno Thierno Diallo, Sophie Dupéré, Annie LeBlanc","doi":"10.1007/s11764-024-01660-w","DOIUrl":"https://doi.org/10.1007/s11764-024-01660-w","url":null,"abstract":"<p><strong>Purpose: </strong>To (i) assess how and to what extent online communities are used among breast cancer survivors (BCS) as a source of social support, (ii) describe the kind of support BCS access through online communities, and (iii) explore how these communities foster social support for BCS that promotes well-being and reduces the challenges of survivorship.</p><p><strong>Methods: </strong>We conducted a scoping review. A professional librarian performed a comprehensive search in multiple databases from January 2010 to May 2023. The review process adhered to the Johana Briggs Institute's method guidelines and the PRISMA-ScR reporting system.</p><p><strong>Results: </strong>Fifteen studies were included. Participants used social media, cancer support communities, message boards, or websites for information and emotional support. Qualitative findings resulted in four themes: to reassure; to empower; to promote equity, diversity, and inclusion; and to demonstrate for BCS the drawbacks of online support.</p><p><strong>Conclusions: </strong>We underscore that a variety of internet websites and social media platforms are valuable for and appreciated by BCS, especially as a source of social support and human connectedness. Our study raises the existing gap in cultural/ethnic representation in this field and shows that institutional and organizational efforts are needed to address gaps in information regarding access to social support for multiethnic BCS women.</p><p><strong>Implications for cancer survivors: </strong>This data synthesis will empower the BCS community by sharing how they can strengthen and support their peers and community via their participation in online communities that connect and support cancer survivors in healthcare spaces.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142080432","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}
Megan E Ware, Chelsea G Goodenough, Matthew D Wogksch, Kevin R Krull, Tara M Brinkman, James R Hebert, Victoria Willard, Rachel Webster, Matthew Ehrhardt, Sedigheh Mirzaei, Gregory T Armstrong, Melissa M Hudson, Kirsten K Ness
{"title":"Associations between perceived cancer impact and measures of health behavior in survivors of childhood cancer.","authors":"Megan E Ware, Chelsea G Goodenough, Matthew D Wogksch, Kevin R Krull, Tara M Brinkman, James R Hebert, Victoria Willard, Rachel Webster, Matthew Ehrhardt, Sedigheh Mirzaei, Gregory T Armstrong, Melissa M Hudson, Kirsten K Ness","doi":"10.1007/s11764-024-01667-3","DOIUrl":"10.1007/s11764-024-01667-3","url":null,"abstract":"<p><strong>Purpose: </strong>Perceived cancer impact (PCI) is the degree to which one feels cancer has impacted one's life. It is unknown if PCI is associated with health behaviors. The aim of this study is to determine associations between PCI and health behaviors in childhood cancer survivors.</p><p><strong>Methods: </strong>Participants were ≥ 5-year survivors enrolled in the St. Jude Lifetime (SJLIFE) cohort. The Brief Cancer Impact (BCIA) assessed PCI across four domains (caregiving/finances, diet/exercise, social/emotional functioning, religiosity). Responses were categorized as negative, neutral, or positive impact. Smoking, risky drinking, illicit drug use, and diet quality data were obtained via self-report. Physical activity (PA) was assessed via self-report and actigraphy. Cross-sectional and longitudinal associations between PCI and health behaviors were evaluated via multivariable logistic regression.</p><p><strong>Results: </strong>A total of 3623 participants (mean age 30.4 ± 8.3 years, 49.6% female, 81.5% NH White) were included in baseline cross-sectional analysis; 1709 had a second visit 5.0 ± 1.4 years later and were included in longitudinal analysis. At baseline, the percentage of participants who endorsed cancer as having a negative impact on caregiving/finances was 37.5%, diet/exercise 30.5%, social/emotional functioning 40.6%, and religiosity 8.7%. Negative and neutral PCI across all four domains were cross-sectionally associated with all behaviors except illicit drug use. Negative and neutral PCI at the first time point across all four domains were associated with smoking, diet quality, and PA (ORs ranging from 1.35 to 2.41) in longitudinal analyses.</p><p><strong>Conclusions: </strong>Endorsing negative or neutral PCI is associated with adverse health behaviors.</p><p><strong>Implications for cancer survivors: </strong>Promoting optimal health behavior should include addressing PCI.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142080431","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}
Sharon L Manne, Shawna V Hudson, Dena O'Malley, Katie A Devine, Matthew Matasar, Jacintha Peram, Justin Solleder, Elizabeth Handorf, Andrew M Evens
{"title":"Survivorship preparedness and activation among survivors of lymphoma.","authors":"Sharon L Manne, Shawna V Hudson, Dena O'Malley, Katie A Devine, Matthew Matasar, Jacintha Peram, Justin Solleder, Elizabeth Handorf, Andrew M Evens","doi":"10.1007/s11764-024-01664-6","DOIUrl":"https://doi.org/10.1007/s11764-024-01664-6","url":null,"abstract":"<p><strong>Objectives: </strong>Taking an active role in managing post-treatment care has emerged as a key aspect of promoting a successful transition into survivorship and is associated with better patient outcomes. In this study, we focus on two key aspects of active self-management, activation and preparedness. Activation was defined as understanding one's role in the care process and having the knowledge, skill, and confidence to take on a role in managing self-care. Preparedness was defined as the extent to which individuals perceived they had sufficient information about what to expect after cancer treatments are completed. The study goal was to characterize survivorship preparedness and activation among lymphoma survivors within 5 years of treatment completion in New Jersey and examine the association of sociodemographic, medical, care transition experiences, practical concerns, and psychosocial factors with activation and preparedness.</p><p><strong>Methods: </strong>One hundred and one Hodgkin lymphoma or non-Hodgkin lymphoma survivors who had completed treatment within 5 years completed a survey of survivorship care experiences (response rate = 34.12%).</p><p><strong>Results: </strong>Approximately 60% of survivors reported high activation, with similar percentages for higher preparedness. Less activated survivors were significantly (p < .05) younger, married, resided in a more deprived geographic area, and reported more fatigue and information needs. Less activated survivors reported recalling that their providers were significantly (p < .05) less likely to discuss long-term side effects, psychosocial needs, risk-reducing lifestyle recommendations, and how to manage other medical concerns. Fewer care transition practices were most strongly associated with lower preparedness.</p><p><strong>Conclusions: </strong>A significant proportion were not activated for survivorship, and both activation and preparedness were strongly associated with providers' survivorship transition practices.</p><p><strong>Implications for cancer survivors: </strong>Implementing programs to foster more activation and preparedness for lymphoma survivorship care would benefit from education about recommended follow-up care and healthy lifestyle practices. Providers should routinely ask about their patients' confidence and preparedness for survivorship and provide referrals for appropriate care as needed.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142072871","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}
Tal Jean Ben-Artzi, Svetlana Baziliansky, Miri Cohen
{"title":"The associations of emotion regulation, self-compassion, and perceived lifestyle discrepancy with breast cancer survivors' healthy lifestyle maintenance.","authors":"Tal Jean Ben-Artzi, Svetlana Baziliansky, Miri Cohen","doi":"10.1007/s11764-024-01656-6","DOIUrl":"https://doi.org/10.1007/s11764-024-01656-6","url":null,"abstract":"<p><strong>Purpose: </strong>Unhealthy lifestyle increases the risk of comorbidities, reduced quality of life, and cancer recurrence among breast cancer survivors. It is important to identify emotional and cognitive factors that may affect the maintenance of a healthy lifestyle over time. This study examined the associations of perceived lifestyle discrepancy, self-compassion, and emotional distress with the maintenance of a healthy lifestyle among breast cancer survivors and the mediating role of emotion regulation patterns (cognitive reappraisal and expressive suppression) in these associations.</p><p><strong>Methods: </strong>A total of 145 female breast cancer survivors aged 31-77 completed self-reports on healthy lifestyle maintenance, perceived lifestyle discrepancy, self-compassion, emotional distress, and emotion regulation patterns. Structural equation modeling was used to analyze the data.</p><p><strong>Results: </strong>Mean physical activity and healthy diet maintenance scores were moderate. The structural equation modeling analysis showed good fit indicators (χ2 = 4.21, df = 10, p = .94; χ2/df = 0.42; NFI = .98; TLI = 1.09; CFI = 1.00; RMSEA = .00, 95% CI (.00, .02)). Lower perceived lifestyle discrepancy was directly associated with higher physical activity (β = -.34, p < .01) and healthy diet (β =-.39, p < .01). Cognitive reappraisal was associated with higher physical activity (β = .19, p < .01), and expressive suppression was associated with lower physical activity (β = -.19, p < .01), and both mediated the association between self-compassion and physical activity.</p><p><strong>Conclusions: </strong>The mediated associations reported in this study indicate that psychosocial factors, especially self-compassion, perceived lifestyle discrepancy, and emotional regulation patterns, are relevant to healthy lifestyle maintenance among breast cancer survivors, because solely providing healthy lifestyle recommendations does not motivate individuals to adhere to them.</p><p><strong>Implications for cancer survivors: </strong>Short-term structured psychosocial interventions designed to reduce perceived health discrepancy and strengthen self-compassion should be implemented and their effect on lifestyle should be further evaluated.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142046669","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}
Gemma McErlean, Christine Ashley, Anisha Pradhan, Vanessa Yenson, Alana Paterson, Gai Farnham, Fran Owen, Anne-Marie Watson, Peter Presgrave, Ian Kerridge, Elizabeth Halcomb
{"title":"A qualitative study on blood and marrow transplant recipients' perceptions of health professional roles following BMT and preferences for ongoing care.","authors":"Gemma McErlean, Christine Ashley, Anisha Pradhan, Vanessa Yenson, Alana Paterson, Gai Farnham, Fran Owen, Anne-Marie Watson, Peter Presgrave, Ian Kerridge, Elizabeth Halcomb","doi":"10.1007/s11764-024-01658-4","DOIUrl":"https://doi.org/10.1007/s11764-024-01658-4","url":null,"abstract":"<p><strong>Purpose: </strong>Survivors of blood and marrow transplantation (BMT) require life-long follow-up involving both tertiary transplant and primary care services. This paper explores the attitudes and preferences of BMT survivors and their carers regarding the transition from BMT centre care to primary care.</p><p><strong>Methods: </strong>This qualitative study involved semi-structured interviews with BMT survivors and carers from New South Wales, Australia. Interviews were audio-recorded, transcribed verbatim and thematically analysed.</p><p><strong>Results: </strong>Twenty-two BMT survivors and six carers were interviewed. Two themes emerged: (1) 'Relationships with health professionals' and (2) 'Challenges of long-term care'. Participants, particularly rural/regional survivors, had diverse views on the availability of community BMT expertise and identified a range of strategies to optimise care for BMT survivors.</p><p><strong>Conclusions: </strong>These results highlight the importance BMT survivors and carers place on their relationships with, and ongoing access to, specialised BMT teams for long-term care. While some are happy to receive community-based care, concerns exist about the capacity of primary care providers, particularly in rural and regional areas. Improved support, communication and coordination between BMT centres and primary care may help facilitate a person-centred, sustainable shared care model. Provider education, use of telehealth and clear delineation of roles and responsibilities may assist in this transition.</p><p><strong>Implications for cancer survivors: </strong>As BMT survivors live longer post-treatment, transitions of care and sustainable long-term care models are needed. A shared care approach, integrating specialised BMT teams and local primary care, may optimise outcomes but requires further development to balance accessibility, preferences, and specialised care needs.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141995771","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":"Complexities in supportive care for people with metastatic breast cancer: a qualitative study.","authors":"Marika Franklin, Sophie Lewis, Andrea L Smith","doi":"10.1007/s11764-024-01646-8","DOIUrl":"https://doi.org/10.1007/s11764-024-01646-8","url":null,"abstract":"<p><strong>Purpose: </strong>The complexity of metastatic breast cancer, its rapidly evolving treatment, and the changing trajectory toward long-term survivorship create unique challenges for the provision of supportive care. The experiences of health professionals enacting supportive care in contexts of those living long-term with incurable cancer have received limited research attention. This qualitative study aimed to gain further insight into health professionals' experiences of supportive care in this context.</p><p><strong>Method: </strong>Semi-structured interviews were conducted via phone and online with 25 health and community-care professionals who support people living with metastatic breast cancer in Australia. A mix of sampling strategies was used. Thematic analysis was undertaken. Findings were interpreted through an ethics of care lens.</p><p><strong>Results: </strong>Three key themes were identified. First, participants experienced supportive care as highly relational. Second, they encountered numerous moral and ethical dilemmas in enacting supportive care. Finally, enacting supportive care was complicated by fragmented and sporadic provision in a system in which supportive care is differentially valued across professions and settings.</p><p><strong>Conclusion: </strong>Findings draw attention to complexities in enacting supportive care in the context of metastatic breast cancer, with implications to patients and professionals. To improve the quality of care provided to patients and minimise the risk of professional burnout, greater attention is needed in supportive care guidelines to the ethical, moral, and emotional complexities experienced by professionals in this context.</p><p><strong>Implications for cancer survivors: </strong>People living with metastatic breast cancer are a growing proportion of cancer survivors. The knowledge gained through this study may help professionals to better meet the supportive care needs of people living with metastatic breast cancer, a treatable but not curable condition.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141995772","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}
Britt J M Thomassen, Anke H C Gielen, Jasmijn Baak, Meindert Sosef, Ester Ancion, Christel M J Gielen, Annerika H M Gidding-Slok, Stephanie O Breukink, Merel L Kimman
{"title":"Supporting follow-up care in colorectal cancer patients: first experiences with the Assessment of Burden of ColoRectal Cancer (ABCRC)-tool.","authors":"Britt J M Thomassen, Anke H C Gielen, Jasmijn Baak, Meindert Sosef, Ester Ancion, Christel M J Gielen, Annerika H M Gidding-Slok, Stephanie O Breukink, Merel L Kimman","doi":"10.1007/s11764-024-01652-w","DOIUrl":"https://doi.org/10.1007/s11764-024-01652-w","url":null,"abstract":"<p><strong>Purpose: </strong>The Assessment of Burden of ColoRectal Cancer (ABCRC)-tool is a unique tool that includes a PROM focused on health-related quality of life (HRQoL), functional outcomes and lifestyle assessment. Furthermore, it provides visualization of results and treatment advice. The tool aims to support follow-up consultations of colorectal cancer (CRC) patients. The purpose of this study was to evaluate the first experiences of patients and healthcare professionals (HCPs) with the ABCRC-tool.</p><p><strong>Methods: </strong>The ABCRC-tool was implemented in two Dutch hospitals and used by 25 patients and 5 HCPs during follow-up care. Consultations were audio-recorded and their content was analyzed independently by two researchers. Semi-structured interviews with patients and HCPs were conducted after the consultation. Interviews focused on the overall experience with the tool, ease of use, interpretation of the PROM and the visualized results and on the added value of the tool.</p><p><strong>Results: </strong>Audio recording revealed that multiple topics, relevant to patients, were discussed during consultations with the ABCRC-tool. Patients and HCPs appreciated the ABCRC-tool as it added structure to the consultation, was helpful in the preparation of consultations and provided useful and convenient treatment options. The tool was easy to use, and the visualization was clear and informative. HCPs suggested that the tool is likely to be most relevant for patients in the first year of follow-up.</p><p><strong>Conclusions: </strong>This study implies that the ABCRC-tool is of added value for patients and their HCPs. Future research should focus on the evaluation of broad implementation, across a wide range of CRC patients.</p><p><strong>Implications for cancer survivors: </strong>The ABCRC-tool is a valid tool to support CRC survivors and HCPs to monitor and visualize experienced burden of disease and lifestyle parameters in order to optimize personalized care.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141988020","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}