中国循证医学杂志

中国循证医学杂志

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

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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,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照。 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调查研究,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并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,其中治疗措疗效、副作用和并发症风险、疾病复发风险及患者需支付的费用等是主要考虑因素。 结论 在临床实践指南制订过程中,仍然未形成患者偏好和价值观的问卷设计标准和方法,要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,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。

Objective To systematically review the necessary factors of questionnaires design about patients' values and preferences in order to provide information on the most appropriate questionnaires when developing clinical practice guidelines. Methods A 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 about patients' preferences and values into the domains and items. Results Twenty articles were finally included. Five out of twenty studies (25%, 5/20) described the process of item generation and only one questionnaire (5%, 1/20) mentioned the pilot testing. Regarding to the validity, there were six questionnaires (30%, 6/20) assessed validity. For acceptability, the time to complete the questionnaires range from 10 to 30 minutes and only six studies reported the response rates. The results showed that the factors affecting the design of questionnaires about patients' values and preference were related to the effectiveness, safety, prognostic factors and other factors. The main factors were the effect, side effects and risk of complications, the risk of relapse and the cost of treatments. Conclusion Only a few studies have developed questionnaires with rigorous psychometric methods to measure patients' preference and values. There is still no valid or reliable questionnaire 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. We suggest that the factors this study provides can use in formulating questionnaires about 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

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