肝豆状核变性患者的症状网络分析及护理启示

doi:10.3761/j.issn.0254-1769.2026.07.013

摘要/Abstract

摘要：

目的调查肝豆状核变性患者症状发生率，分析症状间的复杂关联，识别核心症状与桥梁症状，为精准症状管理和护理提供依据。方法采用便利抽样法，选取2025年9—12月在安徽省某三级甲等医院脑病中心的440例肝豆状核变性患者作为调查对象，使用中文版统一肝豆状核变性评分量表进行症状评估。采用SPSS 27.0和R 4.4.2软件构建症状偏相关网络，采用预期影响值识别核心症状，桥预期影响值识别桥梁症状，并进行网络稳定性与准确性检验。结果肝豆状核变性患者症状发生率前5名依次为不稳定的情绪反应（94.9%）、记忆障碍（77.4%）、敌对情绪（76.0%）、一般损害（71.2%）、言语（66.7%）。核心症状为A15（手指捏合，预期影响值=1.200）、A18-a（姿位性震颤，预期影响值=1.175）；桥梁症状为A11-b（表情缺乏，桥预期影响值=0.337）、B7（肝性脑病，桥预期影响值=0.526）、C19（定向障碍，桥预期影响值=0.878）。症状网络呈现“症状群内协同、症状群间联动”特征，稳定性（稳定性系数=0.672）与准确性良好。结论肝豆状核变性患者症状网络的核心症状与桥梁症状为临床症状干预提供明确靶点，针对性干预可提升症状管理效率，为优化临床护理实践提供参考。

关键词: 肝豆状核变性, 症状网络, 核心症状, 桥梁症状, 症状管理, 护理

Abstract:

Objective To investigate the symptom incidence in patients with Wilson’s disease，analyze the complex correlations among symptoms，identify core symptoms and bridge symptoms，and provide a basis for precision symptom management and nursing. Methods A total of 440 patients with Wilson’s disease admitted to the Encephalopathy Center of a tertiary A hospital in Anhui Province from September to December 2025 were selected by convenience sampling. The Chinese version of the Unified Wilson’s Disease Rating Scale was used for symptom assessment. SPSS 27.0 and R 4.4.2 software were employed to construct a partial correlation network of symptoms. Expected Influence（EI） was used to identify core symptoms，and Bridge Expected Influence（Bridge EI） was used to identify bridge symptoms. Tests for network stability and accuracy were also performed. Results The top 5 most prevalent symptoms in patients with Wilson’s disease were in the following order：unstable emotional reactions（94.9%），memory impairment（77.4%），hostility（76.0%），general impairment（71.2%），and speech（66.7%）. The core symptoms were A15（finger pinching，EI=1.200） and A18-a（postural tremor，EI=1.175）. The bridge symptoms were A11-b（facial masking，Bridge EI=0.337），B7（hepatic encephalopathy，Bridge EI=0.526），and C19（disorientation，Bridge EI=0.878）. The symptom network exhibited the characteristics of “intra-symptom cluster synergy and inter-symptom cluster linkage”，with good stability（CS=0.672） and accuracy. Conclusion The core symptoms and bridge symptoms in the symptom network of patients with Wilson’s disease provide clear targets for clinical symptom intervention. Targeted interventions can improve the efficiency of symptom management and offer references for optimizing nursing practice.

Key words: Wilson Disease, Symptom Network, Core Symptoms, Bridge Symptoms, Symptom Management, Nursing Care

史金瑞, 占婷婷, 郝文杰, 屠文洁, 朱艺航, 张杏杏. 肝豆状核变性患者的症状网络分析及护理启示[J]. 中华护理杂志, 2026, 61(7): 956-963.

SHI Jinrui, ZHAN Tingting, HAO Wenjie, TU Wenjie, ZHU Yihang, ZHANG Xingxing. Symptom network analysis of patients with Wilson’s disease and its nursing implications[J]. Chinese Journal of Nursing, 2026, 61(7): 956-963.

图/表 3

表1 调查对象的一般资料（n=430）

Table 1 Demographic characteristics of study participants（n=430）

表2 肝豆状核变性患者症状发生情况及严重程度（n=430）

Table 2 Symptom occurrence and severity in patients with Wilson’s Disease （n=430）

图1 肝豆状核变性患者症状网络注：神经功能；精神症状；肝脏功能。A1.活动；A2.跌倒；A3.流口水；A4.吞咽；A5.吃饭；A6.穿衣；A7.洗澡或沐浴；A8.梳洗；A9.上厕所；A10.言语；A11-a.口腔肌肉张力障碍；A11-b.表情缺乏；A12.静止性震颤；A13.头部震颤；A14.肌僵直；A15.手指捏合；A16.双手快复轮替动作；A17.书写能力；A18-a.姿位性震颤；A18-b.扑翼样震颤；A19.指鼻试验；A20.腿灵敏性；A21.腿部姿位性震颤；A22.颈部的肌张力障碍；A23.手臂和手掌肌张力障碍；A24.从有扶手的椅子上起立；A25-a.姿势躯干的肌张力障碍；A25-b.姿势共济失调；A25-c.姿势帕金森综合征；A26-a.步态腿部肌张力障碍；A26-b.步态共济失调；A26-c.步态帕金森综合征；A27.舞蹈；B1.一般损害；B2.骨质疏松或关节病；B3.便血；B4.瘙痒；B5.呕血；B6.其他流血或血肿；B7.肝性脑病；B8.黄疸；B9.皮肤或其他变化；C1.睡眠；C2.自主神经紊乱；C3-a.性兴趣减少；C3-b.性兴趣增强；C4.记忆障碍；C5.注意障碍；C6.接触；C7.敌对情绪；C8.迫害观念；C9.评议性幻听；C10.视觉幻觉；C11.自杀冲动；C12.思维奔逸；C13.自尊；C14.语音/噪音水平；C15-a.言语增多；C15-b.言语减少；C16-a.心境增加；C16-b.抑郁；C17.焦虑；C18.不稳定的情绪反应；C19.定向障碍。

Figure 1 Symptom network of patients with Wilson disease

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