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肝细胞癌患者的教育、经济、后勤、情感和社会需求。

Educational, financial, logistical, emotional, and social needs among patients with hepatocellular carcinoma.

作者信息

Lee Debbiesiu L, Hon Sophia, Prieto Bello Daniela, Fernandez Lucia, Jones Patricia D

机构信息

Department of Educational and Psychological Studies, School of Education and Human Development, University of Miami, Coral Gables, Florida, USA.

Department of Medicine, Division of Digestive Health and Liver Diseases, University of Miami Miller School of Medicine, Miami, Florida, USA.

出版信息

Hepatol Commun. 2025 Jul 21;9(8). doi: 10.1097/HC9.0000000000000739. eCollection 2025 Aug 1.

DOI:10.1097/HC9.0000000000000739
PMID:40689526
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12262971/
Abstract

BACKGROUND

Patient navigation has been proposed as a primary method of facilitating successful treatment and outcomes for cancer patients. In order to design a navigation program specific for HCC patients, the aims of this study were 3-fold: (1) to identify the needs of HCC patients, (2) to identify barriers to the successful treatment of HCC, and (3) to identify specific supports needed for the successful treatment of HCC.

METHODS

In-depth qualitative interviews, lasting 60-90 minutes, were conducted with 42 individuals, including 14 patients, 7 caregivers, 8 advocates, 2 research coordinators, and 11 providers. The specialty of the provider participants included Hepatology, Transplant Surgery, Medical Oncology, Radiation Oncology, and Interventional Radiology. Advanced practice providers, social workers, and nurse navigators were also included. Patients, caregivers, and providers were recruited from 2 healthcare systems in South Florida. Advocates were recruited through collaboration with the Global Liver Institute and the Hepatitis B Foundation.

RESULTS

The interviews identified 5 overarching themes representing the navigation needs of HCC patients: (1) Education/Health Literacy, (2) Financial Resources, (3) Coordination of Care, (4) Emotional/Mental Health Management, and (5) Social Support. These overarching themes were composed of various subthemes, which further delineated the specific needs that patients and caregivers have in the context of their HCC treatment.

CONCLUSIONS

This study provides valuable insight into the needs of patients with HCC and their caregivers. Key stakeholders in the field of HCC provided valuable insights into the multidimensional needs of patients with HCC, identifying areas to target with high-quality interventions. To best meet the treatment needs of patients with HCC, successful navigation should include interventions targeted at addressing each of these areas of need.

摘要

背景

患者导航已被提议作为促进癌症患者成功治疗及改善治疗结果的主要方法。为设计一项针对肝癌患者的导航计划,本研究的目的有三个方面:(1)确定肝癌患者的需求;(2)确定肝癌成功治疗的障碍;(3)确定肝癌成功治疗所需的具体支持。

方法

对42人进行了时长60 - 90分钟的深入定性访谈,其中包括14名患者、7名护理人员、8名倡导者、2名研究协调员和11名医疗服务提供者。医疗服务提供者参与者的专业包括肝病学、移植外科、医学肿瘤学、放射肿瘤学和介入放射学。高级执业提供者、社会工作者和护士导航员也包括在内。患者、护理人员和医疗服务提供者从南佛罗里达的两个医疗系统招募。倡导者通过与全球肝脏研究所和乙肝基金会合作招募。

结果

访谈确定了代表肝癌患者导航需求的5个总体主题:(1)教育/健康素养;(2)财务资源;(3)护理协调;(4)情绪/心理健康管理;(5)社会支持。这些总体主题由各种子主题组成,进一步勾勒了患者和护理人员在肝癌治疗背景下的具体需求。

结论

本研究为肝癌患者及其护理人员的需求提供了有价值的见解。肝癌领域的关键利益相关者对肝癌患者的多维需求提供了有价值的见解,确定了可通过高质量干预措施加以解决的领域。为了最好地满足肝癌患者的治疗需求,成功的导航应包括针对解决这些需求领域的干预措施。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2efb/12262971/9ada385e7af6/hc9-9-e0739-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2efb/12262971/d180452ee906/hc9-9-e0739-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2efb/12262971/9ada385e7af6/hc9-9-e0739-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2efb/12262971/d180452ee906/hc9-9-e0739-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2efb/12262971/9ada385e7af6/hc9-9-e0739-g002.jpg

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本文引用的文献

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Health literacy and cumulative social disadvantage are associated with survival and transplant in patients with hepatocellular carcinoma: a prospective study.健康素养与累积社会劣势与肝细胞癌患者的生存及移植相关:一项前瞻性研究。
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Global cancer statistics 2022: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries.
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Caregiver and care recipient health literacy, social support and connectedness on caregiver psychological morbidity: A cross-sectional dyad survey.照顾者和被照顾者的健康素养、社会支持和照顾者心理病态的联系:一项横断面双体调查。
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