健康相关生活质量评估在慢性乙型肝炎患者中的应用及进展
DOI: 10.12449/JCH250120
Application of health-related quality of life assessment in patients with chronic hepatitis B and related advances
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摘要: 传统的生物医学模式转换为生物-心理-社会医学模式,意味着临床诊治的目的不仅局限于疾病本身,更要关注患者的生活质量和幸福指数。由于慢性乙型肝炎(CHB)具有传染性,且易复发和进展,患者需承受生理、心理、经济及社会诸多方面的压力,严重影响其生活质量。因此,对CHB患者进行健康相关生活质量(HRQoL)评估至关重要。本文就CHB患者HRQoL评估的临床意义及价值、测量工具等进行总结,概述影响CHB患者HRQoL的因素和改善其生活质量的措施。本文旨在为临床动态监测CHB患者的HRQoL提供理论支持,也是为优化CHB临床诊疗方案及改善CHB患者的生活质量提供实践指导。Abstract: The transformation of traditional biomedical model into the bio-psycho-social medical model means that the purpose of clinical diagnosis and treatment not only focuses on the disease itself, but also emphasizes the quality of life and happiness index of patients. Since chronic hepatitis B (CHB) is infectious and has high rates of recurrence and progression, patients have to bear many pressures in terms of physiology, psychology, economy, and society, which seriously affects their quality of life. Therefore, it is very important to perform health-related quality of life (HRQoL) assessments for patients with CHB. This article reviews the clinical significance and measurement tools of HRQoL assessments in patients with CHB and summarizes the influencing factors for HRQoL in CHB patients and the measures to improve their HRQoL. This article will provide theoretical support for dynamic monitoring of HRQoL in CHB patients and practical guidance for optimizing the clinical diagnosis and treatment regimens for CHB and improving the quality of life of patients.
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Key words:
- Hepatitis B, Chronic /
- Quality of Life /
- Patient Health Questionnaire
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表 1 CHB患者HRQoL评价的主要量表特征总结
Table 1. Summary of the characteristics of the major scales to evaluate the HRQoL of patients with CHB
分类 量表名称 纳入健康领域/条目 计算得分方法 优点 缺点 普适性
量表
SF-36 躯体健康维度包括生理机能(10个条目)、生理职能(4个条目)、躯体疼痛(2个条目)、一般健康状况(5个条目);
精神健康维度包括精力(4个条目)、社会功能(2个条目)、情感职能(3个条目)、精神健康(5个条目)
采用Likert累加法,按照题值计算原始分数,再用标准公式计算转换分数 (1)应用广泛,信效度高;
(2)可用于不同疾病人群或某疾病人群与健康人HRQoL的评估和比较
缺乏疾病特异性,未纳入肝病相关指标如黄疸等 EQ-5D 行动能力(1个条目)、自我照顾(1个条目)、日常活动(1个条目)、疼痛或不适(1个条目)、焦虑或沮丧(1个条目) 每个健康领域中的健康水平从轻到重分别由1~5表示,每一个健康状态可以用一个5位数的代码表示,总共可定义3 125种健康状态,其中,健康状态11111指在五个维度均没有问题 (1)可用于不同人群HRQoL的评估和比较;
(2)可进行卫生经济学方面的研究,利于医疗资源分配
(1)缺乏疾病特异性;
(2)比较无症状HBV携带者、轻型CHB患者和健康人的HRQoL受到限制
PROMIS-29 抑郁(4个条目)、焦虑(4个条目)、生理功能(4个条目)、疼痛干扰(4个条目)、疲劳(4个条目)、睡眠障碍(4个条目)、社会参与(4个条目) 各领域的分值为4~20,加上一个疼痛强度条目,以0~10分的数字评分法进行测评 (1)能够可靠且有效地反应疾病状态或治疗对患者生活质量的影响;
(2)易于被患者理解;
(3)融入计算机辅助技术使之更高效
(1)缺乏疾病特异性;
(2)有待进一步在CHB人群中进行验证
特异性 量表 LDQOL 1.0
(中文版)
SF-36量表的基础上加上12个疾病特异性维度,含肝病的症状(17个条目)、肝病的影响(10个条目)、注意力(7个条目)、记忆力(6个条目)、社交质量(5个条目)、肝病产生的消极情绪(4个条目)、睡眠(5个条目)、孤独感(5个条目)、绝望感(4个条目)、肝病产生的耻辱感(6个条目)、性功能(3个条目)、性功能障碍(3个条目) 总分经公式转化为标准分0~100分,再进行简单求和,各维度得分越高,患者生活质量越高 (1)纳入肝病相关临床症状等疾病特异性维度;
(2)量表完成率高、可行性好;
(3)适用于所有肝病患者,可用于CHB和其他类型肝病患者HRQoL的比较
(1)由国外量表汉化而来,存在中西方文化差异,需要文化调适;
(2)不能很好地反映患者活力或疲乏状态、社交质量、睡眠、孤独感、绝望感等感受;
(3)有待进一步扩大样本量进行验证
QLICD-CH 共性模块(28个条目):生理功能(含生理机能、独立性、精力共9个条目)、心理功能(含认知、情绪、意志与个性共11个条目)、社会功能(含人际交往、社会支持、社会角色共8个条目);
肝病特异性模块(18个条目):含消化道症状、黄疸、社交影响、治疗副作用、治疗的心理影响、疾病的心理影响
采用1~5分Likert 5级计分法,在量表中有正负性条目之分,正向条目得分越高代表生活质量越好,逆向条目得分越高代表生活质量越差。对逆向条目,需对其进行“正向转换” (1)该量表可适用于我国各种类型的慢性肝炎患者,可用于发病期、治疗期、康复期等各时期患者HRQoL的评价;
(2)可区分患者病情的严重程度
不适用于比较慢性肝炎和健康人的HRQoL差异 CLDQ 腹部症状(3个条目)、疲劳(5个条目)、系统症状(5个条目)、活动(3个条目)、情感功能(8个条目)及焦虑(5个条目) 采用7分制标准(1~7分),各条目、维度及总得分均为正向,分数越高代表生活质量越好 量表可根据患者的肝病类型进一步扩展为相应的亚型 不适用于晚期肝硬化(Child-Pugh B级/C级)患者和健康人的评估 -
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