Watson Linda, Link Claire, Qi Siwei, DeIure Andrea, Chmielewski Lindsi, Hildebrand April, Smith Louise, Barbera Lisa
Applied Research & Patient Experience, Cancer Research & Analytics-Cancer Care Alberta, Alberta Health Services, Calgary, Canada.
Faculty of Nursing, University of Calgary, Calgary, Canada.
Digit Health. 2023 Jul 27;9:20552076231190998. doi: 10.1177/20552076231190998. eCollection 2023 Jan-Dec.
The cancer program in Alberta, Canada routinely collects patient-reported outcomes using the Edmonton symptom assessment system-revised (ESAS-r). The program recently launched the province's new clinical information system which has expanded functionality, allowing patients to complete symptom questionnaires remotely online, instead of completing a paper form at the clinic. This study aimed to test a modified electronic version of the ESAS-r [(e)ESAS-r] with patients, to assess the feasibility of completion and questionnaire clarity.
Staff, patients, and other stakeholders worked to create modified definitions for ESAS-r symptoms, to aid in patient understanding. Patient and family advisors were recruited to test the questionnaire. Participants completed an online mock-up of the (e)ESAS-r and answered questions about technical issues. One-to-one cognitive interviews were held to discuss each symptom definition in detail. Modifications were made based on the feedback and a second round of interviews was held to finalize the wording.
In total, 19 patients and 7 family advisors participated. All but one (96.2%) completed the questionnaire without assistance and had no technical issues. Participants requested certain wording modifications and that definitions be added for all symptoms for consistency. Very few participants reported any confusion with the final definitions.
The (e)ESAS-r was tested for clarity and ease of completion and was determined to be suitable for remote online use with ambulatory cancer patients. The enhanced definitions on the new questionnaire were clear to patients and helped ensure they understood the meaning of each symptom they were asked to rate.
加拿大艾伯塔省的癌症项目通常使用修订后的埃德蒙顿症状评估系统（ESAS-r）收集患者报告的结果。该项目最近推出了该省新的临床信息系统，其功能有所扩展，使患者能够通过远程在线方式完成症状问卷，而不必在诊所填写纸质表格。本研究旨在对ESAS-r的改良电子版[(e)ESAS-r]进行患者测试，以评估完成的可行性和问卷的清晰度。
工作人员、患者及其他利益相关者共同努力为ESAS-r症状创建改良定义，以帮助患者理解。招募患者和家属顾问来测试问卷。参与者完成了(e)ESAS-r的在线模拟并回答了有关技术问题的提问。进行了一对一的认知访谈以详细讨论每个症状定义。根据反馈进行修改，并进行第二轮访谈以确定措辞。
共有19名患者和7名家属顾问参与。除一人外（96.2%），所有人均在无协助的情况下完成了问卷，且没有技术问题。参与者要求对某些措辞进行修改，并为所有症状添加定义以保持一致性。极少数参与者表示对最终定义有任何困惑。
对(e)ESAS-r的清晰度和完成的便利性进行了测试，结果表明其适用于门诊癌症患者的远程在线使用。新问卷上增强的定义对患者来说清晰易懂，并有助于确保他们理解被要求评分的每个症状的含义。
