Kuijpers Wilma, Groen Wim G, Oldenburg Hester Sa, Wouters Michel Wjm, Aaronson Neil K, van Harten Wim H
The Netherlands Cancer Institute, Division of Psychosocial Research and Epidemiology, Amsterdam, Netherlands.
The Netherlands Cancer Institute, Division of Surgical Oncology, Amsterdam, Netherlands.
JMIR Cancer. 2016 May 10;2(1):e3. doi: 10.2196/cancer.5456.
MijnAVL is an interactive portal including patient education, overview of appointments, access to the electronic medical records (EMR), patient-reported outcomes, plus feedback and physical activity support.
With this study we aimed to evaluate the use, feasibility, and impact of MijnAVL among breast cancer survivors.
We included survivors currently or recently treated with curative intent, who completed questions on sociodemographics, patient activation (PAM), quality of life (SF-36), and physical activity (IPAQ). MijnAVL could be used noncommittally for four months. Log data were collected retrospectively and participants completed questions on acceptability, satisfaction, and the PAM, SF-36 and IPAQ.
Ninety-two women (mean age 49.5 years, 59% on-treatment) participated, with a mean number of logins of 8.7. Overview of appointments (80% of participants) and access to the EMR (90%) were most frequently used and most highly valued. Average website user satisfaction was 3.8 on a 5-point scale. Although participants reported having more knowledge and experiencing more control of their situation after using MijnAVL, PAM scores did not change significantly. Three domains of the SF-36 (role functioning - emotional, mental health, and social functioning) and median vigorous physical activity improved significantly over time. The burden of MijnAVL for professionals was limited.
User experiences were positive and exposure to MijnAVL was accompanied by improvements in three quality of life domains and vigorous physical activity. Tailored features may be needed to enhance the usefulness and efficacy of MijnAVL. Research with a controlled design is needed to confirm our findings.
MijnAVL是一个交互式门户网站，包括患者教育、预约概述、电子病历（EMR）访问、患者报告的结果以及反馈和身体活动支持。
通过本研究，我们旨在评估MijnAVL在乳腺癌幸存者中的使用情况、可行性和影响。
我们纳入了目前或最近接受根治性治疗的幸存者，他们完成了关于社会人口统计学、患者激活（PAM）、生活质量（SF-36）和身体活动（IPAQ）的问题。MijnAVL可供非强制性使用四个月。回顾性收集日志数据，参与者完成关于可接受性、满意度以及PAM、SF-36和IPAQ的问题。
92名女性（平均年龄49.5岁，59%正在接受治疗）参与，平均登录次数为8.7次。预约概述（80%的参与者）和电子病历访问（90%）使用最为频繁且评价最高。网站用户平均满意度在5分制中为3.8分。尽管参与者报告在使用MijnAVL后对自身情况有了更多了解并感觉更能掌控，但PAM评分没有显著变化。随着时间推移，SF-36的三个领域（角色功能 - 情感、心理健康和社会功能）以及中度剧烈身体活动有显著改善。MijnAVL给专业人员带来的负担有限。
用户体验良好，接触MijnAVL伴随着生活质量三个领域和中度剧烈身体活动的改善。可能需要定制功能来提高MijnAVL的实用性和有效性。需要进行对照设计的研究来证实我们的发现。
