Department of Medical Oncology, Paoli-Calmettes Institute, Marseille, France.
Cancer. 2011 Oct 15;117(20):4796-804. doi: 10.1002/cncr.26083. Epub 2011 May 23.
Information is crucial for increasing the patients' empowerment and autonomy in relevant decision-making processes, especially in malignant diseases. However, the extent to which information should be delivered is debated. The objective of this study was to assess the impact of providing systematic full access (SFA) to the medical record on anxiety, quality of life, and satisfaction.
Patients with newly diagnosed breast cancer, colon cancer, or lymphoma who had received adjuvant chemotherapy in an outpatient setting were included in a randomized controlled trial comparing those who requested access (RA) and those who provided SFA to the medical record. Anxiety was assessed using the Spielberger State-Trait Anxiety Inventory before, during, and at the end of treatment. Quality of life was evaluated using the European Organization for Research and Cancer quality-of-life questionnaire (EORTC QLQ-C30) before and at the end of treatment. Patients' satisfaction and perception of the organized medical record (OMR) were evaluated using a specifically designed questionnaire at the end of treatment.
Most patients (98%) who had the opportunity to obtain the OMR chose to do so. Anxiety levels did not increase in the SFA arm, although they did not differ significantly compared with anxiety levels in the RA arm. The patients who had full access to their medical record were more satisfied with information (odds ratio, 1.68; 95% confidence interval, 0.98-2.9) and felt sufficiently informed more often (odds ratio, 1.86; 95% confidence interval, 1.08-3.19), but the differences were not statistically significant at the 5% level.
Allowing full access to personal medical records increased satisfaction without increasing anxiety in patients with newly diagnosed cancer.
信息对于增加患者在相关决策过程中的授权和自主权至关重要，尤其是在恶性疾病中。然而，应该提供多少信息仍存在争议。本研究的目的是评估提供系统的全面访问（SFA）医疗记录对焦虑、生活质量和满意度的影响。
本研究纳入了在门诊接受辅助化疗的新诊断乳腺癌、结肠癌或淋巴瘤患者，进行了一项随机对照试验，比较了要求访问（RA）和提供 SFA 医疗记录的患者。在治疗前、治疗期间和治疗结束时使用 Spielberger 状态-特质焦虑量表评估焦虑。在治疗前和治疗结束时使用欧洲癌症研究和治疗组织生活质量问卷（EORTC QLQ-C30）评估生活质量。在治疗结束时使用专门设计的问卷评估患者对病历的满意度和对病历组织（OMR）的看法。
大多数有机会获取 OMR 的患者（98%）选择了这样做。虽然 SFA 组的焦虑水平没有增加，但与 RA 组的焦虑水平相比没有显著差异。全面访问自己医疗记录的患者对信息的满意度更高（优势比，1.68；95%置信区间，0.98-2.9），并且更经常感到信息充分（优势比，1.86；95%置信区间，1.08-3.19），但这些差异在 5%水平上没有统计学意义。
允许全面访问个人医疗记录增加了患者的满意度，而不会增加焦虑。
