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肺癌患者及护理人员的信息需求。

Informational Needs of Lung Cancer Patients and Caregivers.

作者信息

Abuzuluf Haya, Giannopoulos Eleni, Bradbury Penelope, Doherty Mary, Donahoe Laura, Czarnecka-Kujawa Kasia, Quartey Naa Kwarley, Ye Xiang Y, Giuliani Meredith Elana, Papadakos Janet

机构信息

School of Medicine, Department of Medicine, Queen's University, Kingston, ON, Canada.

Cancer Education Program, Princess Margaret Cancer Centre, Cancer Health Literacy Research Centre, Toronto, ON, Canada.

出版信息

J Cancer Educ. 2025 Jan 6. doi: 10.1007/s13187-024-02560-4.

Abstract

The provision of information is critical to the care and support for cancer patients. Relevant information leads to lower anxiety, increased patient control and involvement in decision-making, greater satisfaction, and improved coping skills. To identify the unique needs of lung cancer patients and their caregivers (LPCs), a needs assessment was conducted. LPCs who attended lung cancer clinic completed a self-report survey that assessed informational needs across 6 domains: medical, physical, practical, social, emotional, and spiritual. The questionnaire investigated the importance of information as well as the preferred mode of delivery. One hundred three patients and 96 caregivers completed the survey. Most patients were female (57%), with a median age of 70 (33-91). Most patients were born outside Canada (65%); and majority (56%) identified as Caucasian followed by East Asian (23%). Most patients had non-small cell lung cancer (64%) and were receiving treatment (64%), and half had metastatic disease at diagnosis. Most caregivers were female (65%), median age 55 (23-85), were the primary caregiver (84%), and spent 20 + h/week caregiving (44%). LPCs prioritized the medical and physical domains, with a focus on treatment options, prognosis, managing symptoms, follow-up visits, and complications. One-on-one counseling with a healthcare provider was the preferred method for the medical domain. Caregivers also preferred one-on-one counseling for the physical domain, while patients preferred pamphlets. This study highlights the information that LPCs need and the format they wish to receive it in. The results will guide the development of tailored resources to address specific needs.

摘要

提供信息对于癌症患者的护理和支持至关重要。相关信息可降低焦虑、增强患者对决策的掌控和参与度、提高满意度并改善应对技巧。为了确定肺癌患者及其照护者(LPC)的独特需求,我们进行了一项需求评估。参加肺癌门诊的LPC完成了一项自我报告调查,该调查评估了6个领域的信息需求:医疗、身体、实际、社会、情感和精神。问卷调查了信息的重要性以及首选的传递方式。103名患者和96名照护者完成了调查。大多数患者为女性(57%),中位年龄为70岁(33 - 91岁)。大多数患者出生在加拿大境外(65%);大多数(56%)为白种人,其次是东亚人(23%)。大多数患者患有非小细胞肺癌(64%)且正在接受治疗(64%),一半患者在诊断时患有转移性疾病。大多数照护者为女性(65%),中位年龄55岁(23 - 85岁),是主要照护者(84%),并且每周花费20多小时进行照护(44%)。LPC将医疗和身体领域列为优先事项,重点关注治疗选择、预后、症状管理、随访以及并发症。与医疗服务提供者进行一对一咨询是医疗领域首选的方法。照护者在身体领域也倾向于一对一咨询,而患者则更喜欢宣传册。本研究突出了LPC所需的信息以及他们希望接收信息的形式。研究结果将指导开发满足特定需求的定制资源。

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