Husnu Tore Yavuzsen, Sukriye Cansu Gulteki̇n, Karya Polat, Murat Keser, Zeynep Gulsum Guc, Merve Keskinkilic, Tugba Yavuzsen, Didem Karadibak
Objectives. The aim of this study was to investigate the validity and reliability of the Turkish version of the National Comprehensive Cancer Network/Functional Assessment of Cancer Therapy Ovarian Symptom Index-18 (NFOSI-18) and Functional Assessment of Cancer Therapy/Gynecologic Oncology Group Neurotoxicity 4-item (NTX-4) in patients with advanced ovarian cancer (OC). Methods. Ninety-four women with OC were included. Pearson correlation coefficients were used to examine the convergent validity between the European Quality of Life Survey-5 Dimension-3 Level (EQ-5D-3L) and the Turkish NFOSI-18 and NTX-4. The internal consistencies of the Turkish NFOSI-18 and NTX-4 were calculated using Cronbach’s alpha. Turkish NFOSI-18 and Turkish NTX-4 were readministered to 62 (67.4%) patients with OC after 14–21 days to evaluate test-retest reliability.Results. Turkish NFOSI-18 and Turkish NTX-4 showed excellent internal consistency (Cronbach’s alpha: 0.919 and 0.917, respectively). The test-retest reliability of Turkish NFOSI-18 and Turkish NTX-4 was detected as good to excellent for total score (ICC [95%] = 0.93 [0.88-0.95] and ICC [95%] = 0.90 [0.85-0.94], respectively). Significant correlations were detected between the EQ-5D-3L total score, NFOSI-18 (r = 0.648, < 0.01), and NTX-4 (r = 0.694, < 0.01) indicating sufficient convergent validity. Conclusion. The Turkish NFOSI-18 and Turkish NTX-4 are reliable and valid tools to assess disease-related symptoms in patients with advanced OC.
{"title":"Validity and Reliability of the Turkish Version of National Comprehensive Cancer Network/Functional Assessment of Cancer Therapy Ovarian Symptom Index-18 (NFOSI-18) and Neurotoxicity-4 (NTX-4) for Patients with Advanced Ovarian Cancer","authors":"Husnu Tore Yavuzsen, Sukriye Cansu Gulteki̇n, Karya Polat, Murat Keser, Zeynep Gulsum Guc, Merve Keskinkilic, Tugba Yavuzsen, Didem Karadibak","doi":"10.1155/2023/5521892","DOIUrl":"https://doi.org/10.1155/2023/5521892","url":null,"abstract":"Objectives. The aim of this study was to investigate the validity and reliability of the Turkish version of the National Comprehensive Cancer Network/Functional Assessment of Cancer Therapy Ovarian Symptom Index-18 (NFOSI-18) and Functional Assessment of Cancer Therapy/Gynecologic Oncology Group Neurotoxicity 4-item (NTX-4) in patients with advanced ovarian cancer (OC). Methods. Ninety-four women with OC were included. Pearson correlation coefficients were used to examine the convergent validity between the European Quality of Life Survey-5 Dimension-3 Level (EQ-5D-3L) and the Turkish NFOSI-18 and NTX-4. The internal consistencies of the Turkish NFOSI-18 and NTX-4 were calculated using Cronbach’s alpha. Turkish NFOSI-18 and Turkish NTX-4 were readministered to 62 (67.4%) patients with OC after 14–21 days to evaluate test-retest reliability.Results. Turkish NFOSI-18 and Turkish NTX-4 showed excellent internal consistency (Cronbach’s alpha: 0.919 and 0.917, respectively). The test-retest reliability of Turkish NFOSI-18 and Turkish NTX-4 was detected as good to excellent for total score (ICC [95%] = 0.93 [0.88-0.95] and ICC [95%] = 0.90 [0.85-0.94], respectively). Significant correlations were detected between the EQ-5D-3L total score, NFOSI-18 (r = 0.648, <math xmlns=\"http://www.w3.org/1998/Math/MathML\" id=\"M1\"> <mi>p</mi> </math> < 0.01), and NTX-4 (r = 0.694, <math xmlns=\"http://www.w3.org/1998/Math/MathML\" id=\"M2\"> <mi>p</mi> </math> < 0.01) indicating sufficient convergent validity. Conclusion. The Turkish NFOSI-18 and Turkish NTX-4 are reliable and valid tools to assess disease-related symptoms in patients with advanced OC.","PeriodicalId":11953,"journal":{"name":"European Journal of Cancer Care","volume":" 44","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135291179","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Joanna Gotfrit, Macyn Leung, Horia Marginean, Daniel Kobewka, Dean Fergusson, Rachel Goodwin
Introduction. Advance care planning (ACP) is an important part of cancer care. We determined the ACP practice patterns of medical oncologists at our academic cancer centre in Canada. Methods. Medical oncologists were invited to participate in a questionnaire in August 2019. Questions were validated by a local survey expert. Twelve multiple-choice questions were included. Results. Seventeen of the 23 eligible oncologists responded. 64% were male, and 76% were in practice for <16 years. Common tumour sites treated by respondents included breast (53%), lung (24%), gastrointestinal (24%), and genitourinary (24%) cancers. Oncologists responded that components of ACP included designating a substitute decision-maker (100%), determining goals of care (100%), making decisions about cardiopulmonary resuscitation (94%), and disposition of property/finances (88%). They discuss ACP with curable vs. incurable patients 6% vs. 93% of the time. While 88% of oncologists reported it would be desirable to initiate ACP discussions in the first 3 visits, in the incurable setting, only 29% reported doing so. Patient characteristics that prompt oncologists to discuss ACP in the first 3 visits in the curative vs. incurable settings include elderly age (23% vs. 59%), poor performance status (47% vs. 88%), and short prognosis (47% vs. 88%). Oncologists thought the most appropriate time to discuss ACP in the curative setting was at the time the patient initiates it (35%), and during visits 2-3 in the incurable setting (41%). The most common barriers to discussing ACP include insufficient time (71%) and too much information for the patient (71%). Conclusions. While medical oncologists believe that discussing ACP with cancer patients in the first few outpatient visits is important, this seldom occurs due to the presence of several barriers.
介绍。提前护理计划(ACP)是癌症护理的重要组成部分。我们在加拿大的学术癌症中心确定了医学肿瘤学家的ACP实践模式。方法。医学肿瘤学家被邀请参加2019年8月的问卷调查。问题由当地调查专家验证。包括12道选择题。结果。23位符合条件的肿瘤学家中有17位做出了回应。其中64%为男性，76%从业16年。受访者治疗的常见肿瘤部位包括乳腺癌(53%)、肺癌(24%)、胃肠道(24%)和泌尿生殖系统(24%)癌症。肿瘤学家回答说，ACP的组成部分包括指定替代决策者(100%)、确定护理目标(100%)、做出心肺复苏决策(94%)和财产/财务处置(88%)。他们会和可治愈和无法治愈的病人讨论ACP分别是6%和93%虽然88%的肿瘤学家报告在前3次就诊时进行ACP讨论是可取的，但在无法治愈的情况下，只有29%的人报告这样做。促使肿瘤学家在前3次就诊时讨论ACP的患者特征包括:老年(23% vs. 59%)、表现不佳(47% vs. 88%)和预后短(47% vs. 88%)。肿瘤学家认为，在治愈的情况下讨论ACP最合适的时间是患者开始进行ACP的时候(35%)，在无法治愈的情况下，在第2-3次就诊期间(41%)。讨论ACP最常见的障碍包括时间不足(71%)和患者信息过多(71%)。结论。虽然医学肿瘤学家认为，在最初的几次门诊中与癌症患者讨论ACP是很重要的，但由于存在一些障碍，这种情况很少发生。
{"title":"Practice Patterns of Medical Oncologists: A Survey of Advance Care Planning in the Outpatient Setting","authors":"Joanna Gotfrit, Macyn Leung, Horia Marginean, Daniel Kobewka, Dean Fergusson, Rachel Goodwin","doi":"10.1155/2023/3119940","DOIUrl":"https://doi.org/10.1155/2023/3119940","url":null,"abstract":"Introduction. Advance care planning (ACP) is an important part of cancer care. We determined the ACP practice patterns of medical oncologists at our academic cancer centre in Canada. Methods. Medical oncologists were invited to participate in a questionnaire in August 2019. Questions were validated by a local survey expert. Twelve multiple-choice questions were included. Results. Seventeen of the 23 eligible oncologists responded. 64% were male, and 76% were in practice for <16 years. Common tumour sites treated by respondents included breast (53%), lung (24%), gastrointestinal (24%), and genitourinary (24%) cancers. Oncologists responded that components of ACP included designating a substitute decision-maker (100%), determining goals of care (100%), making decisions about cardiopulmonary resuscitation (94%), and disposition of property/finances (88%). They discuss ACP with curable vs. incurable patients 6% vs. 93% of the time. While 88% of oncologists reported it would be desirable to initiate ACP discussions in the first 3 visits, in the incurable setting, only 29% reported doing so. Patient characteristics that prompt oncologists to discuss ACP in the first 3 visits in the curative vs. incurable settings include elderly age (23% vs. 59%), poor performance status (47% vs. 88%), and short prognosis (47% vs. 88%). Oncologists thought the most appropriate time to discuss ACP in the curative setting was at the time the patient initiates it (35%), and during visits 2-3 in the incurable setting (41%). The most common barriers to discussing ACP include insufficient time (71%) and too much information for the patient (71%). Conclusions. While medical oncologists believe that discussing ACP with cancer patients in the first few outpatient visits is important, this seldom occurs due to the presence of several barriers.","PeriodicalId":11953,"journal":{"name":"European Journal of Cancer Care","volume":"40 2","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135774277","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Megan Bowes, Catherine Coyle, Olga Husson, Kimberly Dienes, Rachael Powell
Objective. Desmoid-type fibromatosis (DF), a rare benign tumour with similar treatment options to cancer, can adversely impact people’s lives, yet little qualitative research addressing patients’ experiences of DF exists. The present study aimed to understand the day-to-day experiences of individuals with DF and their experiences of healthcare. Methods. Semistructured, qualitative interviews were conducted by phone or email with 20 participants. Inductive thematic analysis was performed, structured with the Framework approach. Results. Many participants reported delays in diagnosis. This was attributed to them ignoring their symptoms or to healthcare professionals lacking awareness of DF. Healthcare experiences varied, with some participants expressing good support. Others felt unsupported, viewing staff as dismissive of difficulties. Comparisons between DF and cancer were commonly discussed. Some participants felt relieved that they did not have cancer; others perceived that their needs were secondary to cancer patients and believed they were treated as less important. Participants discussed negative impact of DF on psychosocial well-being. Chronic pain and activity limitations seemed to impact mood and relationships. Conclusion. Greater awareness and understanding of DF by health professionals may help to reduce diagnostic delay and improve support. Individuals may benefit from being treated by specialist DF teams.
{"title":"Daily Living and Healthcare Experiences of Individuals Living with Desmoid-Type Fibromatosis: A Qualitative Investigation","authors":"Megan Bowes, Catherine Coyle, Olga Husson, Kimberly Dienes, Rachael Powell","doi":"10.1155/2023/9756000","DOIUrl":"https://doi.org/10.1155/2023/9756000","url":null,"abstract":"Objective. Desmoid-type fibromatosis (DF), a rare benign tumour with similar treatment options to cancer, can adversely impact people’s lives, yet little qualitative research addressing patients’ experiences of DF exists. The present study aimed to understand the day-to-day experiences of individuals with DF and their experiences of healthcare. Methods. Semistructured, qualitative interviews were conducted by phone or email with 20 participants. Inductive thematic analysis was performed, structured with the Framework approach. Results. Many participants reported delays in diagnosis. This was attributed to them ignoring their symptoms or to healthcare professionals lacking awareness of DF. Healthcare experiences varied, with some participants expressing good support. Others felt unsupported, viewing staff as dismissive of difficulties. Comparisons between DF and cancer were commonly discussed. Some participants felt relieved that they did not have cancer; others perceived that their needs were secondary to cancer patients and believed they were treated as less important. Participants discussed negative impact of DF on psychosocial well-being. Chronic pain and activity limitations seemed to impact mood and relationships. Conclusion. Greater awareness and understanding of DF by health professionals may help to reduce diagnostic delay and improve support. Individuals may benefit from being treated by specialist DF teams.","PeriodicalId":11953,"journal":{"name":"European Journal of Cancer Care","volume":"65 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135221327","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Katie Russell, Anna Tickle, Nima Moghaddam, Sanchia Biswas
Objective. Research reporting the unmet needs of individuals with haematological cancers under watch-and-wait is scarce, despite reports of elevated levels of psychological distress. This qualitative study aimed to explore the psychosocial needs of these individuals, and when these were met, if so at all. Methods. A longitudinal design using semistructured interviews was used. Individuals with a diagnosis of haematological cancer living under watch-and-wait were recruited through online support groups. Participants were each invited to two semistructured interviews, six months apart. Interviews took place in March 2022 and September 2022 and were therefore in the context of the COVID-19 pandemic. All interviews were recorded and transcribed verbatim. Reflexive thematic analysis and pattern-oriented longitudinal analysis were used to analyse the data. Results. Of the fifteen participants interviewed initially, twelve attended a second interview. The sample was predominantly White and female. Across participants and time points, a theme was generated that individuals experienced a “Psychological battle of watch-and-wait.” Under this overarching theme, four themes were constructed: “Understanding the impossible: Cancer that does not require treatment;” “Sense of abandonment under watch and wait;” “The importance of peer connection;” and “Trying to live after COVID-19.” The themes were understood to predominantly represent needs for information, communication, peer support, and emotional support and were most often met when individuals engaged with relevant charities. Conclusion. People living with haematological cancer under watch-and-wait may be at risk of having unmet needs across domains, and without support, these needs will likely remain unmet over time. The findings add to the growing literature base how Oncology and Haematology services can holistically support individuals with indolent cancers to live well alongside their diagnosis.
{"title":"Exploring the Psychosocial Needs of Adults with Haematological Cancer under Watch-and-Wait: A Qualitative Study","authors":"Katie Russell, Anna Tickle, Nima Moghaddam, Sanchia Biswas","doi":"10.1155/2023/6653645","DOIUrl":"https://doi.org/10.1155/2023/6653645","url":null,"abstract":"Objective. Research reporting the unmet needs of individuals with haematological cancers under watch-and-wait is scarce, despite reports of elevated levels of psychological distress. This qualitative study aimed to explore the psychosocial needs of these individuals, and when these were met, if so at all. Methods. A longitudinal design using semistructured interviews was used. Individuals with a diagnosis of haematological cancer living under watch-and-wait were recruited through online support groups. Participants were each invited to two semistructured interviews, six months apart. Interviews took place in March 2022 and September 2022 and were therefore in the context of the COVID-19 pandemic. All interviews were recorded and transcribed verbatim. Reflexive thematic analysis and pattern-oriented longitudinal analysis were used to analyse the data. Results. Of the fifteen participants interviewed initially, twelve attended a second interview. The sample was predominantly White and female. Across participants and time points, a theme was generated that individuals experienced a “Psychological battle of watch-and-wait.” Under this overarching theme, four themes were constructed: “Understanding the impossible: Cancer that does not require treatment;” “Sense of abandonment under watch and wait;” “The importance of peer connection;” and “Trying to live after COVID-19.” The themes were understood to predominantly represent needs for information, communication, peer support, and emotional support and were most often met when individuals engaged with relevant charities. Conclusion. People living with haematological cancer under watch-and-wait may be at risk of having unmet needs across domains, and without support, these needs will likely remain unmet over time. The findings add to the growing literature base how Oncology and Haematology services can holistically support individuals with indolent cancers to live well alongside their diagnosis.","PeriodicalId":11953,"journal":{"name":"European Journal of Cancer Care","volume":"20 4","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136068843","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Tian Tian, Yun Li, Yue Yu, Xuchen Cao, Ming Li, Xin Wang
Background. Primary angiosarcoma of the breast (PAS) is a rare aggressive tumor with no standardized treatment. The aim of this study was to investigate the characteristics of all primary angiosarcoma of the breast obtained from a single center and the features peculiar to Chinese patients. Methods. The medical records at Tianjin Medical University Cancer Institute and Hospital were retrospectively searched to identify all cases of PAS treated in 2000–2019. Results. Sixteen cases of PAS were identified, and most involved the left breast. Forty percent of young patients had a history of progressive tumor enlargement with localized pain and skin color changes. The diagnostic accuracy rate was 66.7% for MRI, 75% for core-needle aspiration, and 58.3% for intraoperative fast frozen pathology. The most common surgery was modified radical mastectomy (n = 9, 56.25%). All positive margins involved the pectoralis major muscle, and these tumors’ mean size was 8.2 cm. All cases were CD34 positive, and the Ki-67 index was ≥30% in 37.5%. Median local or distant recurrence-free survival was 57.6 months for low-to-moderate-grade tumors and 23.5 months for high-grade tumors. Seventy-five percent of the patients were treated with chemotherapy. The average tumor size in patients with relapse-free survival longer than 3 years was 2.2 cm. Conclusion. Young patients may have larger and softer breast tumors with skin color changes. MRI and core-needle biopsy should be performed preoperatively. A positive surgical margin at pectoralis major should be noted. Breast prosthesis may be a better reconstruction option. Adjuvant chemotherapy and/or radiotherapy should be considered for large tumors with a high Ki-67 index or high-grade tumors.
{"title":"Primary Angiosarcoma of the Breast: A 20-Year Single-Institution Experience in China","authors":"Tian Tian, Yun Li, Yue Yu, Xuchen Cao, Ming Li, Xin Wang","doi":"10.1155/2023/2178615","DOIUrl":"https://doi.org/10.1155/2023/2178615","url":null,"abstract":"Background. Primary angiosarcoma of the breast (PAS) is a rare aggressive tumor with no standardized treatment. The aim of this study was to investigate the characteristics of all primary angiosarcoma of the breast obtained from a single center and the features peculiar to Chinese patients. Methods. The medical records at Tianjin Medical University Cancer Institute and Hospital were retrospectively searched to identify all cases of PAS treated in 2000–2019. Results. Sixteen cases of PAS were identified, and most involved the left breast. Forty percent of young patients had a history of progressive tumor enlargement with localized pain and skin color changes. The diagnostic accuracy rate was 66.7% for MRI, 75% for core-needle aspiration, and 58.3% for intraoperative fast frozen pathology. The most common surgery was modified radical mastectomy (n = 9, 56.25%). All positive margins involved the pectoralis major muscle, and these tumors’ mean size was 8.2 cm. All cases were CD34 positive, and the Ki-67 index was ≥30% in 37.5%. Median local or distant recurrence-free survival was 57.6 months for low-to-moderate-grade tumors and 23.5 months for high-grade tumors. Seventy-five percent of the patients were treated with chemotherapy. The average tumor size in patients with relapse-free survival longer than 3 years was 2.2 cm. Conclusion. Young patients may have larger and softer breast tumors with skin color changes. MRI and core-needle biopsy should be performed preoperatively. A positive surgical margin at pectoralis major should be noted. Breast prosthesis may be a better reconstruction option. Adjuvant chemotherapy and/or radiotherapy should be considered for large tumors with a high Ki-67 index or high-grade tumors.","PeriodicalId":11953,"journal":{"name":"European Journal of Cancer Care","volume":"24 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135511020","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Many recipes contain ingredients with various anticancer effects, which can help users to prevent cancer, as well as provide treatment for cancer patients, effectively slowing the disease. Existing recipe knowledge graph recommendation systems obtain entity feature representations by mining latent connections between recipes and between users and recipes to enhance the performance of the recommendation system. However, it ignores the influence of time on user taste preferences, fails to capture the dependency between them from the user’s dietary records, and is unable to more accurately predict the user’s future recipes. We use the KGAT to obtain the embedding representation of entities, considering the influence of time on users, and recipe recommendation can be viewed as a long-term sequence prediction, introducing LSTM networks to dynamically adjust users’ personal taste preferences. Based on the user’s dietary records, we infer the user’s preference for the future diet. Combined with the cancer knowledge graph, we provide the user with diet recommendations that are beneficial to disease prevention and rehabilitation. To verify the effectiveness and rationality of PPKG, we compared it with three other recommendation algorithms on the self-created datasets, and the extensive experimental results demonstrate that our algorithm performance performs other algorithms, which confirmed the effectiveness of PPKG in dealing with sequence recommendation.
{"title":"Anticancer Recipe Recommendation Based on Cancer Dietary Knowledge Graph","authors":"Jianchen Tang, Bing Huang, Mingshan Xie","doi":"10.1155/2023/8816960","DOIUrl":"https://doi.org/10.1155/2023/8816960","url":null,"abstract":"Many recipes contain ingredients with various anticancer effects, which can help users to prevent cancer, as well as provide treatment for cancer patients, effectively slowing the disease. Existing recipe knowledge graph recommendation systems obtain entity feature representations by mining latent connections between recipes and between users and recipes to enhance the performance of the recommendation system. However, it ignores the influence of time on user taste preferences, fails to capture the dependency between them from the user’s dietary records, and is unable to more accurately predict the user’s future recipes. We use the KGAT to obtain the embedding representation of entities, considering the influence of time on users, and recipe recommendation can be viewed as a long-term sequence prediction, introducing LSTM networks to dynamically adjust users’ personal taste preferences. Based on the user’s dietary records, we infer the user’s preference for the future diet. Combined with the cancer knowledge graph, we provide the user with diet recommendations that are beneficial to disease prevention and rehabilitation. To verify the effectiveness and rationality of PPKG, we compared it with three other recommendation algorithms on the self-created datasets, and the extensive experimental results demonstrate that our algorithm performance performs other algorithms, which confirmed the effectiveness of PPKG in dealing with sequence recommendation.","PeriodicalId":11953,"journal":{"name":"European Journal of Cancer Care","volume":"21 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135825343","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Tenaw Tiruye, Kerry Ettridge, Michael O’Callaghan, Kim Moretti, Alex Jay, Braden Higgs, Kerry Santoro, Ganessan Kichenadasse, David Roder, Kerri Beckmann
Aim. To describe the process of developing a resource, the “Prostate Cancer Outcomes Report Card,” that provides information for men with prostate cancer and their family members about the outcomes of different treatment approaches. Methods. The project consisted of two phases. The first phase involved analysis of real-world data and translating outcomes into a format that consumers found easy to understand and interpret. The Report Card was developed in consultation with a consumer advisory group (n = 8). The second phase involved refinements of the resource through exploratory qualitative interviews with consumers (n = 14), an online survey among the general public (n = 134), and clinician feedback (n = 8). Results. Consumer engagement to explore preferences about the content and visual presentation from the end-users’ perspective was crucial in designing this report. Consumers required trustworthy, comprehensive, simple, and up-to-date information collated in one place to help them understand the risks and benefits of their treatments. Presenting survival, cancer recurrence, and functional outcomes by treatment type and risk category was highly commended while data on high survival rates were considered reassuring. We identified high levels of unmet psychosocial and supportive care need, with differences in individual preferences around extent of information required. Conclusions. Communicating registry data about real-world outcomes in a consumer-friendly way may help fill a gap in information needs among prostate cancer survivors. Providing relatively simple and easily understandable evidence in a single consumer-oriented report may help prostate cancer survivors become better informed and facilitate patient-provider communication and shared decision making.
{"title":"Reporting Real-World Data on Prostate Cancer Treatment Outcomes to Consumers: The Prostate Cancer Report Card","authors":"Tenaw Tiruye, Kerry Ettridge, Michael O’Callaghan, Kim Moretti, Alex Jay, Braden Higgs, Kerry Santoro, Ganessan Kichenadasse, David Roder, Kerri Beckmann","doi":"10.1155/2023/6660371","DOIUrl":"https://doi.org/10.1155/2023/6660371","url":null,"abstract":"Aim. To describe the process of developing a resource, the “Prostate Cancer Outcomes Report Card,” that provides information for men with prostate cancer and their family members about the outcomes of different treatment approaches. Methods. The project consisted of two phases. The first phase involved analysis of real-world data and translating outcomes into a format that consumers found easy to understand and interpret. The Report Card was developed in consultation with a consumer advisory group (n = 8). The second phase involved refinements of the resource through exploratory qualitative interviews with consumers (n = 14), an online survey among the general public (n = 134), and clinician feedback (n = 8). Results. Consumer engagement to explore preferences about the content and visual presentation from the end-users’ perspective was crucial in designing this report. Consumers required trustworthy, comprehensive, simple, and up-to-date information collated in one place to help them understand the risks and benefits of their treatments. Presenting survival, cancer recurrence, and functional outcomes by treatment type and risk category was highly commended while data on high survival rates were considered reassuring. We identified high levels of unmet psychosocial and supportive care need, with differences in individual preferences around extent of information required. Conclusions. Communicating registry data about real-world outcomes in a consumer-friendly way may help fill a gap in information needs among prostate cancer survivors. Providing relatively simple and easily understandable evidence in a single consumer-oriented report may help prostate cancer survivors become better informed and facilitate patient-provider communication and shared decision making.","PeriodicalId":11953,"journal":{"name":"European Journal of Cancer Care","volume":"43 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135854192","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Katharina Matjuschenko, Christian Keinki, Jutta Huebner
Purpose. In recent years, decision-making between conventional medicine, complementary medicine (CM), and alternative medicine (AM) has been studied. The purpose of this study is to take a closer look at patients’ thoughts regarding AM and CM and, if possible, to identify differences. Patients and Methods. Ten cancer patients were recruited to participate in a guided semistructured interview. Recruitment was via verbal request during counseling sessions for complementary healing methods. The main recruiting criterion was their interest in or use of AM or CM. In the following face-to-face interviews, demographic data, previous experience with alternative medicine and conventional medicine, doctor-patient communication, role of the family, and sources of information were determined. The interviews were conducted in a semistructured manner using a guide and were recorded anonymously. The recordings were subsequently transcribed. Results. The number of patients was 10, of which eight were female and seven could show higher educational status. In most of the cases, poor communication was mentioned, both in past situations and at the time of diagnosis. Patients described a lack of emotion in the communication of their diagnosis and paternalistic discussions. They complained that they did not receive an overview of the therapy and that they were hardly involved in the decision-making process. Especially, the demanding content as well as the scarcity of conversation time played an important role for the doctor-patient relationship and the resulting trust toward the doctor. A fundamentally dismissive attitude toward CM, AM, and CAM procedures led to a more fragile trust base. Most frequently used sources were the Internet, support organizations, and books. Conclusion. The first point of contact for cancer patients is usually the conventional physician. Commonly, he is one of the most important sources. If the patient is satisfied with the atmosphere of the conversation and the information regarding CAM received, he will probably follow the doctor’s recommendations. Only in the case of dissatisfaction do patients seek advice from alternative medicine. Good training of conventional physicians in communication and complementary therapy options could, therefore, be of great importance.
{"title":"Patients’ Reasons to Consider and Their Attitudes toward Complementary and Alternative Medicine","authors":"Katharina Matjuschenko, Christian Keinki, Jutta Huebner","doi":"10.1155/2023/8808797","DOIUrl":"https://doi.org/10.1155/2023/8808797","url":null,"abstract":"Purpose. In recent years, decision-making between conventional medicine, complementary medicine (CM), and alternative medicine (AM) has been studied. The purpose of this study is to take a closer look at patients’ thoughts regarding AM and CM and, if possible, to identify differences. Patients and Methods. Ten cancer patients were recruited to participate in a guided semistructured interview. Recruitment was via verbal request during counseling sessions for complementary healing methods. The main recruiting criterion was their interest in or use of AM or CM. In the following face-to-face interviews, demographic data, previous experience with alternative medicine and conventional medicine, doctor-patient communication, role of the family, and sources of information were determined. The interviews were conducted in a semistructured manner using a guide and were recorded anonymously. The recordings were subsequently transcribed. Results. The number of patients was 10, of which eight were female and seven could show higher educational status. In most of the cases, poor communication was mentioned, both in past situations and at the time of diagnosis. Patients described a lack of emotion in the communication of their diagnosis and paternalistic discussions. They complained that they did not receive an overview of the therapy and that they were hardly involved in the decision-making process. Especially, the demanding content as well as the scarcity of conversation time played an important role for the doctor-patient relationship and the resulting trust toward the doctor. A fundamentally dismissive attitude toward CM, AM, and CAM procedures led to a more fragile trust base. Most frequently used sources were the Internet, support organizations, and books. Conclusion. The first point of contact for cancer patients is usually the conventional physician. Commonly, he is one of the most important sources. If the patient is satisfied with the atmosphere of the conversation and the information regarding CAM received, he will probably follow the doctor’s recommendations. Only in the case of dissatisfaction do patients seek advice from alternative medicine. Good training of conventional physicians in communication and complementary therapy options could, therefore, be of great importance.","PeriodicalId":11953,"journal":{"name":"European Journal of Cancer Care","volume":"162 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135303798","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Background. Family caregivers in charge of patients with advanced cancer play an essential role. The psychosocial cost of these caregiving activities has been studied, and psychosocial interventions have been developed to improve the quality of life of family caregivers. A deeper understanding of caregivers’ burden is essential in order to enhance the benefits of these interventions. The aim of this study was to explore the socioeconomic and cultural factors responsible for shaping the complex personal experience of family caregiving and to analyse the moral dimensions of the caring experience so as to understand its effects on family caregivers more clearly. Materials and Methods. A qualitative study based on in-depth interviews was conducted with patients with advanced cancer (n = 20) and their family caregivers (n = 19) from 2017 to 2020. These interviews were analysed using an inductive approach and an iterative procedure. A thematic analysis was then performed using Tronto’s “ethic of care” framework in order to identify the various levels of responsibility and the relationships and effects involved. Results. Providing patients with advanced cancer with informal care is highly valuable work requiring various moral qualities, including attentiveness, responsibility, competence, and responsiveness. The mental load resulting from the moral aspects of care results from the cumulative effects of carers’ attentiveness and the responsibilities they have taken on. Conclusion. The present findings could guide healthcare professionals to develop best practice resources and guidelines in order to alleviate the hitherto underestimated effects of caring and promote a coordinated public health approach addressing the needs of caregivers. These efforts are particularly important as contemporary health policies tend to promote the shift from inpatient to outpatient treatment, which increases the importance of informal caregiving and the burden involved.
{"title":"The Moral Dimensions of Family Caregiving for Patients with Advanced Cancer: A Qualitative Study","authors":"Aline Sarradon-Eck, Aurelia Mathiot, Seth M. Holmes, Elise Gilbert, Géraldine Capodano, Aurélien Proux","doi":"10.1155/2023/6635542","DOIUrl":"https://doi.org/10.1155/2023/6635542","url":null,"abstract":"Background. Family caregivers in charge of patients with advanced cancer play an essential role. The psychosocial cost of these caregiving activities has been studied, and psychosocial interventions have been developed to improve the quality of life of family caregivers. A deeper understanding of caregivers’ burden is essential in order to enhance the benefits of these interventions. The aim of this study was to explore the socioeconomic and cultural factors responsible for shaping the complex personal experience of family caregiving and to analyse the moral dimensions of the caring experience so as to understand its effects on family caregivers more clearly. Materials and Methods. A qualitative study based on in-depth interviews was conducted with patients with advanced cancer (n = 20) and their family caregivers (n = 19) from 2017 to 2020. These interviews were analysed using an inductive approach and an iterative procedure. A thematic analysis was then performed using Tronto’s “ethic of care” framework in order to identify the various levels of responsibility and the relationships and effects involved. Results. Providing patients with advanced cancer with informal care is highly valuable work requiring various moral qualities, including attentiveness, responsibility, competence, and responsiveness. The mental load resulting from the moral aspects of care results from the cumulative effects of carers’ attentiveness and the responsibilities they have taken on. Conclusion. The present findings could guide healthcare professionals to develop best practice resources and guidelines in order to alleviate the hitherto underestimated effects of caring and promote a coordinated public health approach addressing the needs of caregivers. These efforts are particularly important as contemporary health policies tend to promote the shift from inpatient to outpatient treatment, which increases the importance of informal caregiving and the burden involved.","PeriodicalId":11953,"journal":{"name":"European Journal of Cancer Care","volume":"53 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134974987","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Anthony Levy, Gautier Defossez, Vincent Delwail, Stéphanie Guidez, Sammara Chaubard, Christopher Nunes Gomes, Laura Cailly, Valentin Letailleur, Antoine Machet, Xavier Leleu, Pierre Ingrand, Thomas Systchenko
Introduction. Prephase treatment (PP) is recommended in diffuse large B-cell lymphomas (DLBCL) to decrease therapy-related toxicities and to avoid tumour lysis syndrome. Data in the real world are limited, and no study has evaluated the impact on overall survival. We aimed to evaluate overall survival (OS), progression-free survival (PFS), and grade III-IV toxicities during the first cycle according to PP. Methods and Materials. All DLBCL diagnosed between 2014 and 2017 and aged between 18 and 80 years were identified by the Poitou-Charentes General Cancer Registry (France). PP was defined as any treatment prior to first-line, excluding anthracycline and/or Rituximab. We performed propensity score matching (PSM) to control characteristics at diagnosis, reduce bias, and approximate a randomized trial. Results. Three hundred and forty patients received first-line treatment in 17 hospital centers: 126 (37%) with prephase and 214 (63%) without prephase (NPP). After PSM, 97 patients remained in each group without significant difference in characteristics at diagnosis; matched PP patients had a 2-year OS of 71% (vs. 77%, = 0.32), a 2-year PFS of 61% (vs. 74%, = 0.12), and 26% grade III-IV toxicities (vs. 27%, = 0.75). No tumour lysis syndrome was reported. PP nonsignificantly decreases grade III-IV toxicities for patients with high tumour load ( = 0.82) or elderly patients ( = 0.81). Conclusion. PP treatment does not affect survival nor does it reduce therapy-related toxicities even for patients with high tumour load or elderly patients. Further studies are needed to evaluate the efficacy and safety of PP.
介绍。弥漫性大b细胞淋巴瘤(DLBCL)建议进行前期治疗(PP)，以减少治疗相关的毒性并避免肿瘤溶解综合征。现实世界的数据是有限的，没有研究评估过对总体生存的影响。我们的目的是根据PP评估第一周期的总生存期(OS)、无进展生存期(PFS)和III-IV级毒性。2014年至2017年间诊断的所有DLBCL，年龄在18岁至80岁之间，均由普瓦图-夏朗德癌症登记处(法国)确定。PP定义为一线治疗之前的任何治疗，不包括蒽环类药物和/或利妥昔单抗。我们采用倾向评分匹配(PSM)来控制诊断时的特征，减少偏倚，并近似随机试验。结果。340名患者在17个医院中心接受了一线治疗:126名(37%)患者接受了前期治疗，214名(63%)患者没有接受前期治疗。经PSM治疗后，两组各有97例患者，诊断时特征无显著差异;匹配的PP患者的2年OS为71% (vs. 77%， P = 0.32)， 2年PFS为61% (vs. 74%， P = 0.12)， III-IV级毒性为26% (vs. 27%， P = 0.75)。未见肿瘤溶解综合征的报道。对于高肿瘤负荷患者(P = 0.82)或老年患者(P = 0.81)， PP未显著降低III-IV级毒性。结论。即使对于高肿瘤负荷患者或老年患者，PP治疗也不会影响生存，也不会降低治疗相关的毒性。PP的有效性和安全性有待进一步的研究评价。
{"title":"Prognostic Impact of Prephase Treatment Prior to First-Line Treatment in DLBCL: A Population-Based Registry Study","authors":"Anthony Levy, Gautier Defossez, Vincent Delwail, Stéphanie Guidez, Sammara Chaubard, Christopher Nunes Gomes, Laura Cailly, Valentin Letailleur, Antoine Machet, Xavier Leleu, Pierre Ingrand, Thomas Systchenko","doi":"10.1155/2023/1826112","DOIUrl":"https://doi.org/10.1155/2023/1826112","url":null,"abstract":"Introduction. Prephase treatment (PP) is recommended in diffuse large B-cell lymphomas (DLBCL) to decrease therapy-related toxicities and to avoid tumour lysis syndrome. Data in the real world are limited, and no study has evaluated the impact on overall survival. We aimed to evaluate overall survival (OS), progression-free survival (PFS), and grade III-IV toxicities during the first cycle according to PP. Methods and Materials. All DLBCL diagnosed between 2014 and 2017 and aged between 18 and 80 years were identified by the Poitou-Charentes General Cancer Registry (France). PP was defined as any treatment prior to first-line, excluding anthracycline and/or Rituximab. We performed propensity score matching (PSM) to control characteristics at diagnosis, reduce bias, and approximate a randomized trial. Results. Three hundred and forty patients received first-line treatment in 17 hospital centers: 126 (37%) with prephase and 214 (63%) without prephase (NPP). After PSM, 97 patients remained in each group without significant difference in characteristics at diagnosis; matched PP patients had a 2-year OS of 71% (vs. 77%, <math xmlns=\"http://www.w3.org/1998/Math/MathML\" id=\"M1\"> <mi>P</mi> </math> = 0.32), a 2-year PFS of 61% (vs. 74%, <math xmlns=\"http://www.w3.org/1998/Math/MathML\" id=\"M2\"> <mi>P</mi> </math> = 0.12), and 26% grade III-IV toxicities (vs. 27%, <math xmlns=\"http://www.w3.org/1998/Math/MathML\" id=\"M3\"> <mi>P</mi> </math> = 0.75). No tumour lysis syndrome was reported. PP nonsignificantly decreases grade III-IV toxicities for patients with high tumour load ( <math xmlns=\"http://www.w3.org/1998/Math/MathML\" id=\"M4\"> <mi>P</mi> </math> = 0.82) or elderly patients ( <math xmlns=\"http://www.w3.org/1998/Math/MathML\" id=\"M5\"> <mi>P</mi> </math> = 0.81). Conclusion. PP treatment does not affect survival nor does it reduce therapy-related toxicities even for patients with high tumour load or elderly patients. Further studies are needed to evaluate the efficacy and safety of PP.","PeriodicalId":11953,"journal":{"name":"European Journal of Cancer Care","volume":"53 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135815196","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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