首页 > 最新文献

Journal of Cancer Survivorship最新文献

英文 中文
Nursing care services to address unmet supportive care needs among cancer survivors: a systematic review. 为满足癌症幸存者未得到满足的支持性护理需求而提供的护理服务:系统综述。
IF 3.1 2区 医学 Q2 ONCOLOGY Pub Date : 2024-09-06 DOI: 10.1007/s11764-024-01661-9
Hyun Jin Song, Hyun-Ju Seo, Eun Jeong Choi, Ji Sung Lee, Yumi Choi

Background: 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.

Objective: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

Implications for cancer survivors: 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.

背景:癌症幸存者人数不断增加,给全球医疗保健系统带来了巨大挑战:癌症幸存者的不断增加给全球医疗系统带来了巨大的挑战,他们需要全面的治疗后护理来满足不同的生理、心理和社会需求:本系统性综述旨在综合并批判性地评估目前有关癌症幸存者护理服务需求未得到满足的证据,涉及幸存者护理的各个方面:在主要数据库(包括 PubMed、CINAHL 和 PsycINFO)中进行了系统性检索,以确定调查癌症幸存者对由护士主导的护理服务的未满足需求和与健康相关的生活质量 (HRQOL) 的相关研究。最后一次检索更新于 2024 年 6 月进行。未满足的需求按生物-心理-社会-精神框架进行分类:在搜索的 9503 条记录中,共纳入了 18 项研究。该综述显示,在未满足的需求和旨在解决这些需求的干预措施方面,研究结果喜忧参半。虽然护士主导的干预措施在满足身体和日常生活需求方面显示出前景,但与心理和情感需求相关的结果在不同的研究中存在差异。此外,护士主导的干预措施在满足患者与医生的沟通和医疗系统/信息需求方面也很有效,但统计意义并不一致。使用一般指标和癌症特异性指标进行的HRQOL评估结果不一:尽管所纳入的研究存在偏倚风险的局限性,而且在评估护士主导的癌症幸存者干预效果方面的研究设计薄弱,但研究结果凸显了护理实践在改善未满足的生理、心理和社会需求方面的潜力,并最终改善他们的 HRQOL。然而,由于研究数量较少,护理服务对精神需求的影响受到了限制:通过提供全面的支持和管理,护理实践可以提高癌症幸存者的治疗后效果和 HRQOL,从而促进以患者为中心的更有效的护理服务。从生物-心理-社会-精神的角度来帮助癌症幸存者提高 HRQOL,还需要进行更严格的研究。
{"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}
引用次数: 0
Experienced financial toxicity among long-term cancer survivors: results from a national cross-sectional survey. 癌症长期幸存者所经历的财务毒性:一项全国横断面调查的结果。
IF 3.1 2区 医学 Q2 ONCOLOGY Pub Date : 2024-09-03 DOI: 10.1007/s11764-024-01668-2
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

Purpose: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

Implications for cancer survivors: 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.

目的:经济毒性是客观经济负担造成的主观痛苦,对癌症幸存者有很大影响。然而,对幸存者的持久影响仍不清楚。因此,我们对长期癌症幸存者所经历的客观经济负担和主观经济困扰进行了调查:方法:我们对确诊后≥5 年的成年癌症幸存者进行了横断面全国性在线调查。客观经济负担通过额外支出和收入损失来衡量,主观经济困扰则包括心理健康、应对和寻求支持的行为以及财务问题。通过 t 检验和卡方检验对各组进行比较(即癌症患者与既往患者)。财务毒性通过桑基图和旭日图进行可视化分析:4,675 名受访者完成了调查,其中 2,391 人(51%)在癌症确诊后≥ 5 年。其中 75% 的受访者在确诊癌症后经历了收入损失和/或额外支出。三分之一曾就业的受访者依靠工作残疾津贴。此外,"入不敷出 "的比例从确诊前的 2% 增加到确诊后≥ 5y 的 13%(P 结论):癌症幸存者经常面临收入损失和额外支出,导致持续的经济困难,影响他们的心理健康。尽管有如此重大的影响,但却缺乏帮助他们应对这些财务挑战的指导和支持。这些发现凸显了医护人员认识和应对财务挑战的必要性:这项研究强调了癌症幸存者普遍面临的财务挑战,强调了持续的财务支持和对其身心健康进行全面评估的必要性。
{"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}
引用次数: 0
Recommendations on the surveillance and supplementation of vitamins and minerals for upper gastrointestinal cancer survivors: a scoping review. 上消化道癌症幸存者维生素和矿物质的监测和补充建议:范围审查。
IF 3.1 2区 医学 Q2 ONCOLOGY Pub Date : 2024-08-29 DOI: 10.1007/s11764-024-01666-4
Sim Yee Cindy Tan, Tiffany Tsoukalas, Kirsten Javier, Tiffany Fazon, Sheena Singh, Janette Vardy

Background: 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.

Methods: 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.

Results: 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.

Conclusion: 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.

Implications for cancer survivors: 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.

背景:早期上消化道癌症(UGI)患者在手术后胃肠功能会发生改变,从而影响其营养状况和健康状况。为上消化道癌幸存者提供的营养护理很少关注长期生存。在此,我们探讨了对胃肠道癌术后幸存者进行微量营养素缺乏监测和补充的建议:方法:根据乔安娜-布里格斯研究所(Joanna Briggs Institute)的范围界定综述方法进行范围界定综述。检索了六个数据库(Medline、Embase、CINAHL、Cochrane、Scopus 和 PsycINFO)和 21 个癌症相关组织网站。纳入了 2010 年至 2024 年 3 月期间针对成人上消化道癌(食道癌、胃癌、胰腺癌、小肠癌和胆道癌)幸存者提出建议的出版物:结果:26 篇出版物符合筛选标准:11篇综述(8篇叙述性综述、2篇系统性综述、1篇荟萃分析)、7篇专家意见、6篇指南和2篇共识文件。22篇出版物建议监测微量营养素缺乏症,23篇建议补充微量营养素,其中8篇缺乏详细资料。大多数出版物针对胃癌患者(19 篇),其次是胰腺癌(7 篇)和食道癌(3 篇),没有针对胆道癌和小肠癌的。维生素B12和铁是三个肿瘤组推荐的最一致的微量营养素:有限的出版物建议在生存阶段对上消化道癌幸存者的微量营养素状况进行监测,尤其是食道癌和胰腺癌幸存者;大多数出版物都是叙述性综述。这些建议缺乏细节,信息也不一致:对癌症幸存者的启示:上消化道癌的长期幸存者在术后有微量营养素缺乏的风险。需要采用标准化的方法来预防、监测和治疗微量营养素缺乏症。
{"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}
引用次数: 0
Connected and supported: a scoping review of how online communities provide social support for breast cancer survivors. 连接与支持:关于网络社区如何为乳腺癌幸存者提供社会支持的范围研究。
IF 3.1 2区 医学 Q2 ONCOLOGY Pub Date : 2024-08-28 DOI: 10.1007/s11764-024-01660-w
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

Purpose: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

Implications for cancer survivors: 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.

目的:(i) 评估乳腺癌幸存者(BCS)如何以及在多大程度上使用网络社区作为社会支持的来源,(ii) 描述乳腺癌幸存者通过网络社区获得的支持类型,(iii) 探讨这些社区如何为乳腺癌幸存者提供社会支持,从而促进福祉并减少幸存者面临的挑战:我们进行了范围界定审查。一位专业图书管理员对 2010 年 1 月至 2023 年 5 月期间的多个数据库进行了全面检索。综述过程遵循了约翰娜-布里格斯研究所(Johana Briggs Institute)的方法指南和 PRISMA-ScR 报告系统:结果:共纳入 15 项研究。参与者通过社交媒体、癌症支持社区、留言板或网站获取信息和情感支持。定性研究结果产生了四个主题:安抚;赋权;促进公平、多样性和包容性;为 BCS 证明在线支持的缺点:我们强调,各种互联网站和社交媒体平台对 BCS 都很有价值,也很受 BCS 的欢迎,尤其是作为社会支持和人际联系的来源。我们的研究提出了这一领域在文化/种族代表性方面存在的差距,并表明需要机构和组织做出努力,解决多种族 BCS 妇女在获得社会支持方面的信息差距:本数据综述将通过分享 BCS 社区如何通过参与在线社区来加强和支持其同伴和社区,从而在医疗保健领域为癌症幸存者提供联系和支持,从而增强他们的能力。
{"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}
引用次数: 0
Associations between perceived cancer impact and measures of health behavior in survivors of childhood cancer. 儿童癌症幸存者感知到的癌症影响与健康行为测量之间的关联。
IF 3.1 2区 医学 Q2 ONCOLOGY Pub Date : 2024-08-28 DOI: 10.1007/s11764-024-01667-3
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

Purpose: 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.

Methods: 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.

Results: 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.

Conclusions: Endorsing negative or neutral PCI is associated with adverse health behaviors.

Implications for cancer survivors: Promoting optimal health behavior should include addressing PCI.

目的:感知到的癌症影响(PCI)是指一个人认为癌症对其生活的影响程度。目前尚不清楚 PCI 是否与健康行为相关。本研究旨在确定儿童癌症幸存者的 PCI 与健康行为之间的关联:参与者为圣裘德终身(SJLIFE)队列中≥ 5 年的幸存者。简明癌症影响(BCIA)评估了四个领域(护理/财务、饮食/运动、社会/情感功能、宗教信仰)的PCI。评估结果分为负面影响、中性影响和正面影响。吸烟、危险饮酒、非法药物使用和饮食质量数据通过自我报告获得。体力活动(PA)则通过自我报告和运动记录仪进行评估。通过多变量逻辑回归评估了PCI与健康行为之间的横向和纵向关联:共有 3623 名参与者(平均年龄为 30.4 ± 8.3 岁,49.6% 为女性,81.5% 为 NH 白人)被纳入基线横断面分析;1709 名参与者在 5.0 ± 1.4 年后进行了第二次访问,并被纳入纵向分析。基线时,认为癌症对护理/经济有负面影响的参与者比例为 37.5%,饮食/运动为 30.5%,社会/情感功能为 40.6%,宗教信仰为 8.7%。在所有四个领域中,负性和中性 PCI 与除非法药物使用以外的所有行为都有横截面关联。在纵向分析中,在所有四个领域的第一个时间点,负性和中性PCI与吸烟、饮食质量和PA相关(OR从1.35到2.41不等):结论:支持消极或中性 PCI 与不良健康行为有关:对癌症幸存者的启示:促进最佳健康行为应包括解决PCI问题。
{"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}
引用次数: 0
Survivorship preparedness and activation among survivors of lymphoma. 淋巴瘤幸存者的生存准备和激活。
IF 3.1 2区 医学 Q2 ONCOLOGY Pub Date : 2024-08-27 DOI: 10.1007/s11764-024-01664-6
Sharon L Manne, Shawna V Hudson, Dena O'Malley, Katie A Devine, Matthew Matasar, Jacintha Peram, Justin Solleder, Elizabeth Handorf, Andrew M Evens

Objectives: 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.

Methods: 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%).

Results: 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.

Conclusions: A significant proportion were not activated for survivorship, and both activation and preparedness were strongly associated with providers' survivorship transition practices.

Implications for cancer survivors: 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.

目的:在治疗后护理管理中发挥积极作用已成为促进成功过渡到生存期的一个关键方面,并且与患者更好的治疗效果相关。在本研究中,我们重点关注积极自我管理的两个关键方面:激活和准备。激活被定义为了解自己在护理过程中的角色,并拥有管理自我护理的知识、技能和信心。准备度被定义为个人认为自己对癌症治疗结束后的预期有足够了解的程度。研究目标是描述新泽西州淋巴瘤幸存者在治疗结束后 5 年内的生存准备和激活情况,并研究社会人口、医疗、护理过渡经验、实际问题和社会心理因素与激活和准备的关联:101 名在 5 年内完成治疗的霍奇金淋巴瘤或非霍奇金淋巴瘤幸存者完成了幸存者护理经验调查(回复率 = 34.12%):结果:约 60% 的幸存者表示积极性很高,准备程度较高的幸存者所占比例相似。积极性较低的幸存者比例明显较高:很大一部分幸存者未被激活,而激活度和准备度与医疗服务提供者的幸存者过渡措施密切相关:对癌症幸存者的启示:通过开展有关推荐的后续治疗和健康生活方式的教育,可促进淋巴瘤幸存者更积极地接受治疗并为治疗做好准备。医疗服务提供者应定期询问患者对生存期的信心和准备情况,并根据需要提供适当的转诊服务。
{"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}
引用次数: 0
The associations of emotion regulation, self-compassion, and perceived lifestyle discrepancy with breast cancer survivors' healthy lifestyle maintenance. 情绪调节、自我同情和感知到的生活方式差异与乳腺癌幸存者保持健康生活方式的关系。
IF 3.1 2区 医学 Q2 ONCOLOGY Pub Date : 2024-08-24 DOI: 10.1007/s11764-024-01656-6
Tal Jean Ben-Artzi, Svetlana Baziliansky, Miri Cohen

Purpose: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

Implications for cancer survivors: 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.

目的:不健康的生活方式会增加乳腺癌幸存者合并症、生活质量下降和癌症复发的风险。确定可能影响长期保持健康生活方式的情绪和认知因素非常重要。本研究探讨了感知到的生活方式差异、自我同情和情绪困扰与乳腺癌幸存者保持健康生活方式的关联,以及情绪调节模式(认知重评和表达抑制)在这些关联中的中介作用:共有 145 名年龄在 31-77 岁之间的女性乳腺癌幸存者完成了关于健康生活方式维持、感知生活方式差异、自我同情、情绪困扰和情绪调节模式的自我报告。结构方程模型用于分析数据:结果:体育锻炼和健康饮食维持的平均得分处于中等水平。结构方程模型分析显示拟合指标良好(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))。较低的生活方式差异感知与较高的体育锻炼(β = -.34,p < .01)和健康饮食(β =-.39,p < .01)直接相关。认知重评与较高的体育锻炼相关(β = .19,p < .01),表达压抑与较低的体育锻炼相关(β = -.19,p < .01),两者都在自我同情与体育锻炼之间起中介作用:本研究中报告的中介关联表明,社会心理因素,尤其是自我同情、感知到的生活方式差异和情绪调节模式,与乳腺癌幸存者保持健康生活方式息息相关,因为仅仅提供健康生活方式建议并不能激励个人坚持这些建议:对癌症幸存者的启示:应实施旨在减少感知到的健康差异和加强自我同情的短期结构化社会心理干预,并进一步评估其对生活方式的影响。
{"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}
引用次数: 0
A qualitative study on blood and marrow transplant recipients' perceptions of health professional roles following BMT and preferences for ongoing care. 一项关于血液和骨髓移植受者对医护人员在 BMT 后所扮演角色的看法以及对持续护理的偏好的定性研究。
IF 3.1 2区 医学 Q2 ONCOLOGY Pub Date : 2024-08-17 DOI: 10.1007/s11764-024-01658-4
Gemma McErlean, Christine Ashley, Anisha Pradhan, Vanessa Yenson, Alana Paterson, Gai Farnham, Fran Owen, Anne-Marie Watson, Peter Presgrave, Ian Kerridge, Elizabeth Halcomb

Purpose: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

Implications for cancer survivors: 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.

目的:血液和骨髓移植(BMT)幸存者需要终生接受三级移植和初级医疗服务的随访。本文探讨了 BMT 幸存者及其护理者对从 BMT 中心护理过渡到初级护理的态度和偏好:这项定性研究对澳大利亚新南威尔士州的 BMT 幸存者和照护者进行了半结构化访谈。对访谈进行了录音、逐字记录和主题分析:共采访了 22 名 BMT 幸存者和 6 名照护者。出现了两个主题:(1)"与医疗专业人员的关系 "和(2)"长期护理的挑战"。参与者(尤其是农村/地区幸存者)对社区 BMT 专业人员的可用性有不同看法,并提出了一系列优化 BMT 幸存者护理的策略:这些结果凸显了 BMT 幸存者和照顾者对他们与 BMT 专业团队的关系以及持续获得 BMT 专业团队的长期护理的重视。虽然有些人乐于接受社区护理,但他们对初级医疗服务提供者的能力表示担忧,尤其是在农村和地区。加强 BMT 中心与基层医疗机构之间的支持、沟通和协调可能有助于促进以人为本、可持续的共同护理模式。对癌症幸存者的影响:随着 BMT 幸存者在治疗后存活时间的延长,需要过渡护理和可持续的长期护理模式。整合 BMT 专业团队和当地初级保健的共同护理方法可优化治疗效果,但需要进一步发展,以平衡可及性、偏好和专业护理需求。
{"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}
引用次数: 0
Complexities in supportive care for people with metastatic breast cancer: a qualitative study. 为转移性乳腺癌患者提供支持性护理的复杂性:一项定性研究。
IF 3.1 2区 医学 Q2 ONCOLOGY Pub Date : 2024-08-17 DOI: 10.1007/s11764-024-01646-8
Marika Franklin, Sophie Lewis, Andrea L Smith

Purpose: 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.

Method: 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.

Results: 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.

Conclusion: 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.

Implications for cancer survivors: 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.

目的:转移性乳腺癌的复杂性、快速发展的治疗方法以及长期生存的变化轨迹为提供支持性护理带来了独特的挑战。医护人员在为长期生活在不治之症中的癌症患者提供支持性护理方面的经验得到的研究关注有限。这项定性研究旨在进一步了解医护人员在这种情况下的支持性护理经验:通过电话和网络对澳大利亚 25 名支持转移性乳腺癌患者的医疗和社区护理专业人员进行了半结构化访谈。采用了多种抽样策略。进行了主题分析。结果:确定了三个关键主题。首先,参与者体验到支持性护理具有高度的关系性。其次,他们在实施支持性护理时遇到了许多道德和伦理困境。最后,在支持性护理在不同专业和环境中的价值不同的系统中,支持性护理的零散提供使支持性护理的实施变得更加复杂:结论:研究结果使人们注意到在转移性乳腺癌患者中开展支持性护理的复杂性,并对患者和专业人员产生了影响。为了提高为患者提供的护理质量并最大限度地降低专业人员职业倦怠的风险,需要在支持性护理指南中更多地关注专业人员在这种情况下所经历的伦理、道德和情感方面的复杂性:转移性乳腺癌患者在癌症幸存者中所占比例越来越大。通过这项研究获得的知识可以帮助专业人员更好地满足转移性乳腺癌患者的支持性护理需求,这是一种可以治疗但无法治愈的疾病。
{"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}
引用次数: 0
Supporting follow-up care in colorectal cancer patients: first experiences with the Assessment of Burden of ColoRectal Cancer (ABCRC)-tool. 支持结直肠癌患者的随访护理:结直肠癌负担评估 (ABCRC) 工具的初步经验。
IF 3.1 2区 医学 Q2 ONCOLOGY Pub Date : 2024-08-16 DOI: 10.1007/s11764-024-01652-w
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

Purpose: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

Implications for cancer survivors: 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.

目的:结直肠癌负担评估(ABCRC)工具是一种独特的工具,它包括一个侧重于健康相关生活质量(HRQoL)、功能结果和生活方式评估的 PROM。此外,它还提供可视化结果和治疗建议。该工具旨在为结直肠癌(CRC)患者的后续咨询提供支持。本研究旨在评估患者和医疗保健专业人员(HCPs)使用 ABCRC 工具的初次体验:ABCRC工具在荷兰两家医院实施,25名患者和5名医护人员在随访过程中使用了该工具。两名研究人员对咨询过程进行了录音,并对其内容进行了独立分析。会诊结束后,对患者和医疗保健人员进行了半结构化访谈。访谈的重点是工具的总体使用体验、易用性、PROM 和可视化结果的解释以及工具的附加值:录音显示,在使用 ABCRC 工具进行会诊期间,讨论了与患者相关的多个话题。患者和保健医生对 ABCRC 工具表示赞赏,因为它增加了会诊的结构,有助于会诊的准备工作,并提供了有用、方便的治疗方案。该工具易于使用,图像清晰,信息丰富。高级保健人员认为,该工具可能与第一年随访的患者最为相关:本研究表明,ABCRC 工具对患者及其保健医生具有附加价值。未来的研究应侧重于对广泛的 CRC 患者进行广泛实施的评估:ABCRC 工具是一种有效的工具,可帮助 CRC 幸存者及其保健医生监测和直观了解所经历的疾病负担和生活方式参数,从而优化个性化护理。
{"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}
引用次数: 0
期刊
Journal of Cancer Survivorship
全部 Acc. Chem. Res. ACS Applied Bio Materials ACS Appl. Electron. Mater. ACS Appl. Energy Mater. ACS Appl. Mater. Interfaces ACS Appl. Nano Mater. ACS Appl. Polym. Mater. ACS BIOMATER-SCI ENG ACS Catal. ACS Cent. Sci. ACS Chem. Biol. ACS Chemical Health & Safety ACS Chem. Neurosci. ACS Comb. Sci. ACS Earth Space Chem. ACS Energy Lett. ACS Infect. Dis. ACS Macro Lett. ACS Mater. Lett. ACS Med. Chem. Lett. ACS Nano ACS Omega ACS Photonics ACS Sens. ACS Sustainable Chem. Eng. ACS Synth. Biol. Anal. Chem. BIOCHEMISTRY-US Bioconjugate Chem. BIOMACROMOLECULES Chem. Res. Toxicol. Chem. Rev. Chem. Mater. CRYST GROWTH DES ENERG FUEL Environ. Sci. Technol. Environ. Sci. Technol. Lett. Eur. J. Inorg. Chem. IND ENG CHEM RES Inorg. Chem. J. Agric. Food. Chem. J. Chem. Eng. Data J. Chem. Educ. J. Chem. Inf. Model. J. Chem. Theory Comput. J. Med. Chem. J. Nat. Prod. J PROTEOME RES J. Am. Chem. Soc. LANGMUIR MACROMOLECULES Mol. Pharmaceutics Nano Lett. Org. Lett. ORG PROCESS RES DEV ORGANOMETALLICS J. Org. Chem. J. Phys. Chem. J. Phys. Chem. A J. Phys. Chem. B J. Phys. Chem. C J. Phys. Chem. Lett. Analyst Anal. Methods Biomater. Sci. Catal. Sci. Technol. Chem. Commun. Chem. Soc. Rev. CHEM EDUC RES PRACT CRYSTENGCOMM Dalton Trans. Energy Environ. Sci. ENVIRON SCI-NANO ENVIRON SCI-PROC IMP ENVIRON SCI-WAT RES Faraday Discuss. Food Funct. Green Chem. Inorg. Chem. Front. Integr. Biol. J. Anal. At. Spectrom. J. Mater. Chem. A J. Mater. Chem. B J. Mater. Chem. C Lab Chip Mater. Chem. Front. Mater. Horiz. MEDCHEMCOMM Metallomics Mol. Biosyst. Mol. Syst. Des. Eng. Nanoscale Nanoscale Horiz. Nat. Prod. Rep. New J. Chem. Org. Biomol. Chem. Org. Chem. Front. PHOTOCH PHOTOBIO SCI PCCP Polym. Chem.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
0
微信
客服QQ
Book学术公众号 扫码关注我们
反馈
×
意见反馈
请填写您的意见或建议
请填写您的手机或邮箱
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
现在去查看 取消
×
提示
确定
Book学术官方微信
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术
文献互助 智能选刊 最新文献 互助须知 联系我们:info@booksci.cn
Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。
Copyright © 2023 Book学术 All rights reserved.
ghs 京公网安备 11010802042870号 京ICP备2023020795号-1