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中文标题:中国原发性脑肿瘤患者恐惧疾病进展的现状及影响因素:混合方法研究。

Current status and influencing factors of fear disease progression in Chinese primary brain tumor patients: A mixed methods study.

机构信息

School of Nursing and Rehabilitation, Nantong University, 19th Qixiu Road, Nantong 226001, China; Department of Neurosurgery, Affiliated Hospital of Nantong University, 20th Xisi Road, Nantong 226001, China.

School of Nursing and Rehabilitation, Nantong University, 19th Qixiu Road, Nantong 226001, China.

出版信息

Clin Neurol Neurosurg. 2024 Nov;246:108574. doi: 10.1016/j.clineuro.2024.108574. Epub 2024 Sep 27.

Abstract

OBJECTIVE

In this study, we investigated the fear of disease progression in Chinese PBT patients and examined the correlation between sociodemographic, clinical, and psychological variables of patients with the fear of progression (FoP). Additionally, the study also evaluated the subjective experience of FoP in patients with primary brain tumors (PBT).

METHODS

A mixed-methods study was conducted between March 2022 and December 2023, consisting of two phases: a quantitative approach in phase I, and a qualitative approach in phase II. In phase I, 305 patients with PBT filled in several questionnaires. An analysis was performed to identify potential predictors associated with FoP. In phase II, semi-structured interviews were conducted with 16 participants whose FoP scores were ≥ 34 in phase I to obtain information on their personal experiences with FoP.

RESULTS

The results of the quantitative study showed that 192 (63 %) patients experienced high levels of FoP. The mean score of fear of progression was (34.02±6.78). Young age, high disease uncertainty, low social support, high negative coping and low positive coping are important factors affecting FoP in PBT patients. Qualitative research focused on three themes: triggers, coping styles, and the help needed.

CONCLUSION

Enhanced screening and assessment of FoP is essential to identify dysfunctionin PBT. Meanwhile, the implications of these predictors for enhanced healthcare professional education and patient self-management may help healthcare providers implement relevant interventions promptly and help patients reduce their FoP. However, due to limitations such as sample, reporting bias, and specific mechanisms between predictors and FOPs that have not yet been explored in depth, further exploration is needed in the future.

摘要

目的

本研究旨在探讨中国脑肿瘤患者对疾病进展的恐惧,并检验患者的人口统计学、临床和心理变量与对进展恐惧(FoP)的相关性。此外,本研究还评估了原发性脑肿瘤(PBT)患者对 FoP 的主观体验。

方法

本研究采用混合方法,研究期间为 2022 年 3 月至 2023 年 12 月,分为两个阶段:第一阶段采用定量方法,第二阶段采用定性方法。在第一阶段,305 名 PBT 患者填写了多项问卷。进行分析以确定与 FoP 相关的潜在预测因素。在第二阶段,对第一阶段 FoP 得分≥34 的 16 名参与者进行半结构式访谈,以获取他们个人 FoP 体验的信息。

结果

定量研究结果显示,192 名(63%)患者经历了高水平的 FoP。FoP 平均得分为(34.02±6.78)。年轻、高疾病不确定性、低社会支持、高消极应对和低积极应对是影响 PBT 患者 FoP 的重要因素。定性研究集中于三个主题:触发因素、应对方式和所需帮助。

结论

增强对 FoP 的筛查和评估对于识别 PBT 患者的功能障碍至关重要。同时,这些预测因素对增强医疗保健专业人员教育和患者自我管理的意义可能有助于医疗保健提供者及时实施相关干预措施,并帮助患者减轻 FoP。然而,由于样本、报告偏倚以及预测因素和 FoP 之间尚未深入探讨的特定机制等限制,未来仍需要进一步探索。

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