Kristen Bibeau, Tara D Jackson, Melinda Bachini, Anouk Lindley, Fernando Blanco, Christine LaFiura, Haobo Ren, Stacie Lindsey
{"title":"胆管癌的诊断历程和生活影响:来自患者和护理人员经历的调查结果。","authors":"Kristen Bibeau, Tara D Jackson, Melinda Bachini, Anouk Lindley, Fernando Blanco, Christine LaFiura, Haobo Ren, Stacie Lindsey","doi":"10.2217/fon-2023-0151","DOIUrl":null,"url":null,"abstract":"<p><p><b>Aim:</b> To understand cholangiocarcinoma symptoms, diagnosis and treatment experience from the patient and caregiver perspective, including cholangiocarcinoma's impact on daily life, quality of life (QoL) and mental health. <b>Methods:</b> Patients and caregivers participated in two online surveys (in partnership with the Cholangiocarcinoma Foundation). <b>Results:</b> The patient survey data (n = 707) show a substantial impact of cholangiocarcinoma on QoL and mental health, with 34% of patients reporting symptoms consistent with moderately severe/severe depression. The caregiver survey data (n = 60) show that although caregivers experience satisfaction in their role of caring for a loved one, managing the demands of caregiving exacts a physical, mental and emotional toll. <b>Conclusion:</b> These surveys highlight the need for better palliative and supportive care interventions.</p>","PeriodicalId":12672,"journal":{"name":"Future oncology","volume":" ","pages":"997-1012"},"PeriodicalIF":3.0000,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Diagnostic journey and life impact of cholangiocarcinoma: results from surveys of patient and caregiver experiences.\",\"authors\":\"Kristen Bibeau, Tara D Jackson, Melinda Bachini, Anouk Lindley, Fernando Blanco, Christine LaFiura, Haobo Ren, Stacie Lindsey\",\"doi\":\"10.2217/fon-2023-0151\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p><b>Aim:</b> To understand cholangiocarcinoma symptoms, diagnosis and treatment experience from the patient and caregiver perspective, including cholangiocarcinoma's impact on daily life, quality of life (QoL) and mental health. <b>Methods:</b> Patients and caregivers participated in two online surveys (in partnership with the Cholangiocarcinoma Foundation). <b>Results:</b> The patient survey data (n = 707) show a substantial impact of cholangiocarcinoma on QoL and mental health, with 34% of patients reporting symptoms consistent with moderately severe/severe depression. The caregiver survey data (n = 60) show that although caregivers experience satisfaction in their role of caring for a loved one, managing the demands of caregiving exacts a physical, mental and emotional toll. <b>Conclusion:</b> These surveys highlight the need for better palliative and supportive care interventions.</p>\",\"PeriodicalId\":12672,\"journal\":{\"name\":\"Future oncology\",\"volume\":\" \",\"pages\":\"997-1012\"},\"PeriodicalIF\":3.0000,\"publicationDate\":\"2024-05-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Future oncology\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.2217/fon-2023-0151\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2023/12/5 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q2\",\"JCRName\":\"ONCOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Future oncology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.2217/fon-2023-0151","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2023/12/5 0:00:00","PubModel":"Epub","JCR":"Q2","JCRName":"ONCOLOGY","Score":null,"Total":0}
Diagnostic journey and life impact of cholangiocarcinoma: results from surveys of patient and caregiver experiences.
Aim: To understand cholangiocarcinoma symptoms, diagnosis and treatment experience from the patient and caregiver perspective, including cholangiocarcinoma's impact on daily life, quality of life (QoL) and mental health. Methods: Patients and caregivers participated in two online surveys (in partnership with the Cholangiocarcinoma Foundation). Results: The patient survey data (n = 707) show a substantial impact of cholangiocarcinoma on QoL and mental health, with 34% of patients reporting symptoms consistent with moderately severe/severe depression. The caregiver survey data (n = 60) show that although caregivers experience satisfaction in their role of caring for a loved one, managing the demands of caregiving exacts a physical, mental and emotional toll. Conclusion: These surveys highlight the need for better palliative and supportive care interventions.
期刊介绍：
Future Oncology (ISSN 1479-6694) provides a forum for a new era of cancer care. The journal focuses on the most important advances and highlights their relevance in the clinical setting. Furthermore, Future Oncology delivers essential information in concise, at-a-glance article formats - vital in delivering information to an increasingly time-constrained community.
The journal takes a forward-looking stance toward the scientific and clinical issues, together with the economic and policy issues that confront us in this new era of cancer care. The journal includes literature awareness such as the latest developments in radiotherapy and immunotherapy, concise commentary and analysis, and full review articles all of which provide key findings, translational to the clinical setting.
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