目的系统评价临床实践指南制订中患者价值观与偏好的调查问卷内容,对问卷设计的考虑因素进行总结,为指南制订者更好地评估患者价值观与偏好提供参考。方法计算机检索 PubMed、EMbase、The Cochrane Library、CBM、CNKI 和 WanFang Data 数据库,搜集国内外公开发表的指南制订过程中有完整评估患者价值观和偏好的调查问卷内容的研究,应用心理测量学方法评估问卷内容的质量并对问卷设计的影响因素进行总结后形成条目和相应的领域。结果最终纳入 20 篇文献,仅 5 篇文献(25%,5/20)描述了问卷条目的制订过程,1 份问卷(5%,1/20)报告了问卷的预试验,6 份问卷(30%,6/20)评估了问卷的可行性。在问卷可接受性方面,完成问卷的时间范围为 10~30 分钟,仅有 6 份问卷(30%,6/20)报告了答复率。患者价值观与偏好问卷设计的考虑因素涉及有效性、安全性、预后因素及其他方面,其中治疗措施的疗效、副作用和并发症风险、疾病复发风险、患者支付费用等是主要考虑因素。结论在临床实践指南制订过程中,仍未形成患者偏好和价值观的问卷设计标准和方法,未来在充分考虑与评估针对患者治疗措施的有效性、安全性、预后因素及其他因素基础上,进一步研究开发标准化工具来设计和衡量有关患者价值观和偏好的问卷调查内容。

ObjectivesTo systematically review the necessary factors of questionnaires design on patients' values and preferences in order to provide information on the most appropriate questionnaires when developing clinical practice guidelines.MethodsA systematic literature search of PubMed, EMbase, The Cochrane Library, CBM, CNKI and WanFang Data databases was performed to identify studies on questionnaires evaluating patient values and preferences. The authors included the articles that used fully structured questionnaires or scales with standardized questions and answer options. We assessed the questionnaires' construction with psychometric methodology and summarized the necessary factors on patients' preferences and values into the domains and items.ResultsTwenty articles were eventually included. Five out of 20 studies (25%, 5/20) described the process of item generation while merely one questionnaire (5%, 1/20) mentioned pilot testing. Regarding validity, there were 6 questionnaires (30%, 6/20) that assessed validity. For acceptability, the time taken to complete the questionnaires range from 10 to 30 minutes and only 6 studies reported response rates. The results showed that the factors affecting the design of questionnaires on patients' values and preference were related to the effectiveness, safety, prognostic factors and others. The main factors were the effects, side effects and risk of complications, risk of relapse and the cost of treatments.ConclusionsOnly a few studies have developed questionnaires with rigorous psychometric methods to measure patients' preference and values. There is still no valid or reliable questionnaires for patients' preference and values when developing clinical practice guidelines. Further study should be conducted to develop standardized instruments to measure patients' preference and values. It is suggested that the factors this study provides can be used in formulating questionnaires on patients' preference and values.

关键词: 临床指南; 问卷; 患者价值观与偏好; 系统评价

Key words: Clinical guideline; Questionnaires; Patients' values and preferences; Systematic review

引用本文: 令娟, 姚亮, 王明霞, 黄嘉骏, 陈耀龙, 田金徽, 王小琴, 杨克虎. 临床实践指南制订中患者价值观与偏好问卷设计考虑因素的系统评价. 中国循证医学杂志, 2018, 18(12): 1359-1367. doi: 10.7507/1672-2531.201804174 复制

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