The best tools to assess patient illness understanding are unclear. Here, we examined the assessment tools for illness understanding administered in randomized clinical trials (RCTs) involving patients with advanced cancer, how accuracy of illness understanding was assessed, and each tool’s level of accuracy. We conducted a systematic review of Ovid MEDLINE, Ovid EMBASE, and Web of Science from database inception to 28 February 2024. We included all RCTs that reported on illness understanding assessments in cancer patients. The assessment measures were classified into five categories: prognostic awareness, health status, curability, treatment intent, and treatment risks/benefits. We extracted the questions, answers, definitions of accuracy, and accuracy rates of each category. The final sample included 27 articles based on 16 RCTs; five articles (19%) had a Jadad score of ≥3. Among these articles, 10 (37%) assessed prognostic awareness, 4 (15%) assessed health status, 9 (33%) assessed curability, 11 (41%) assessed treatment intent, and 3 (11%) assessed treatment risks/benefits. Only four RCTs examined illness understanding as a primary outcome or communication intervention. We observed significant heterogeneity in the questions, answers, definition of accuracy, and accuracy rate of patients’ responses for all themes except for health status. The accuracy rate ranged from 6% to 33% for prognostic awareness, 45% to 59% for health status, 35% to 84% for curability, 26% to 88% for treatment intent, and 17% to 75% for treatment risks/benefits. This study highlights significant variation in current illness understanding assessments and opportunities for standardization to support clinical practice and research.
目前评估患者对疾病认知的最佳工具尚不明确。本研究系统分析了针对晚期癌症患者的随机对照试验中采用的疾病认知评估工具，探讨了疾病认知准确性的评估方法及各工具的准确性水平。我们系统检索了Ovid MEDLINE、Ovid EMBASE和Web of Science数据库自建库至2024年2月28日的文献，纳入所有报告癌症患者疾病认知评估的随机对照试验。评估指标分为五类：预后认知、健康状况、可治愈性、治疗目的及治疗风险/获益。我们提取了各类别的评估问题、答案选项、准确性定义及准确率数据。最终样本包含基于16项随机对照试验的27篇文献，其中5篇（19%）Jadad评分≥3分。在这些文献中，10篇（37%）评估预后认知，4篇（15%）评估健康状况，9篇（33%）评估可治愈性，11篇（41%）评估治疗目的，3篇（11%）评估治疗风险/获益。仅4项随机对照试验将疾病认知作为主要结局指标或沟通干预措施进行评估。除健康状况外，所有主题在评估问题、答案选项、准确性定义及患者回答准确率方面均存在显著异质性：预后认知准确率为6%-33%，健康状况为45%-59%，可治愈性为35%-84%，治疗目的为26%-88%，治疗风险/获益为17%-75%。本研究揭示了当前疾病认知评估存在显著差异，亟需标准化以支持临床实践与研究。
肿瘤(癌症)患者之家