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头颈癌患者的信息及支持需求:现状与新问题

Informational and Support Needs of Patients with Head and Neck Cancer: Current Status and Emerging Issues.

作者信息

Fang Carolyn Y, Heckman Carolyn J

机构信息

Fox Chase Cancer Center, 333 Cottman Ave., Philadelphia, PA.

出版信息

Cancers Head Neck. 2016;1. doi: 10.1186/s41199-016-0017-6. Epub 2016 Nov 11.

Abstract

The objective of this article is to review and summarize the extant literature on head and neck cancer (HNC) patients' informational needs and to characterize emerging issues in this patient population in order to define priorities for future research. HNC patients may undergo challenging treatment regimens and experience treatment-related alterations in primary daily functions such as speech and eating. These changes often persist following treatment and may lead to significant deficits in quality of life and interpersonal relations. Despite empirical evidence demonstrating that receipt of adequate information and support is predictive of improved outcomes post-treatment, relatively limited attention has been paid to the informational and support needs of HNC patients. This review focuses primarily on three topic domains: (1) managing treatment-related side effects; (2) addressing alcohol and tobacco dependence; and (3) informational needs in the areas of human papillomavirus (HPV) and clinical trials. While there is increasing awareness of the rehabilitation and survivorship needs in this patient population, patients note that the impact of treatment on social activities and interactions is under-discussed and of key concern. In addition, there is a significant gap in addressing communication and informational needs of caregivers and family members who are integral for promoting healthy behaviors and self-care post-treatment. Greater integration of programs that address tobacco or alcohol dependency within a comprehensive treatment and support plan may increase patient motivation to seek help and enhance patient success in maintaining long-term abstinence. Finally, emerging patient-provider communication needs, particularly in the context of decision making about clinical trials or surrounding an HPV-related diagnosis, have been noted among both patients and healthcare providers. Future research on the development of novel programs that offer feasible and acceptable methods for addressing unmet informational and support needs is warranted and may yield benefit for improving patient-reported outcomes.

摘要

本文的目的是回顾和总结关于头颈癌(HNC)患者信息需求的现有文献,并描述该患者群体中出现的新问题,以便确定未来研究的重点。头颈癌患者可能会接受具有挑战性的治疗方案,并经历与治疗相关的主要日常功能改变,如言语和进食。这些变化在治疗后往往会持续存在,并可能导致生活质量和人际关系出现显著缺陷。尽管有实证证据表明,获得足够的信息和支持可预测治疗后的改善结果,但对头颈癌患者的信息和支持需求的关注相对有限。本综述主要关注三个主题领域:(1)管理与治疗相关的副作用;(2)解决酒精和烟草依赖问题;(3)人乳头瘤病毒(HPV)和临床试验领域的信息需求。虽然人们越来越意识到该患者群体的康复和生存需求,但患者指出,治疗对社交活动和互动的影响讨论不足,是关键关注点。此外,在满足对促进治疗后健康行为和自我护理至关重要的护理人员和家庭成员的沟通和信息需求方面存在重大差距。在综合治疗和支持计划中更大程度地整合解决烟草或酒精依赖问题的项目,可能会增加患者寻求帮助的动力,并提高患者长期戒酒的成功率。最后,患者和医疗服务提供者都指出了新出现的患者与提供者沟通需求,特别是在关于临床试验的决策背景下或围绕HPV相关诊断的情况下。有必要对开发新的项目进行未来研究,这些项目提供可行且可接受的方法来满足未满足的信息和支持需求,这可能会有助于改善患者报告的结果。

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