Beaudoin Maude, Best Krista L, Routhier François, Atack Lynda, Hitzig Sander L, Kairy Dahlia
Université Laval, Quebec City, Canada.
Center for Interdisciplinary Research in Rehabilitation and Social Integration (CIRRIS), Centre intégré universitaire de santé et de services sociaux de la Capitale-Nationale, Quebec City, Canada.
Top Spinal Cord Inj Rehabil. 2020 Winter;26(1):64-77. doi: 10.1310/sci2601-64.
Quality of life (QoL) is an important parameter to monitor during rehabilitation; however, accurate assessment is challenging. Among individuals with spinal cord injury (SCI), assessing QoL is further challenged due to complex sequelae, such as secondary health conditions and factors related to community integration. A Participation and Quality of Life (PAR-QoL) toolkit was created to aid clinicians and researchers in the selection of QoL outcomes tools specific to SCI. The aim of this study was to evaluate the use and usability of the PAR-QoL toolkit. A cross-sectional study was conducted using an online survey from December 2013 to November 2016. Google Analytics were collected from April 2012 to April 2018. Survey sections addressed "use" (behavioral practices and actual use) and "usability" (perceived ease of use and perceived usefulness). Any person who visited the PAR-QoL website was invited to complete the survey. Summary statistics and percent concordances were calculated to describe results from the survey and Google Analytics. The PAR-QoL website had 188,577 users. The five most visited webpages were outcome tools, with bounce rates ranging from 77% to 90%. Of the 46 survey respondents, 67% were not current users of the PAR-QoL website, and 87% intended to use the resources in the future. Uptake of the PAR-QoL website is currently limited. Usability of the PAR-QoL website may be improved by modifying navigation, removing the "less useful" components, ensuring regular updates of content and resources, and promoting the website.
生活质量(QoL)是康复过程中需要监测的一个重要参数;然而,准确评估具有挑战性。在脊髓损伤(SCI)患者中,由于存在复杂的后遗症,如继发健康状况以及与社区融入相关的因素,生活质量评估面临更大挑战。创建了一个参与和生活质量(PAR-QoL)工具包,以帮助临床医生和研究人员选择特定于脊髓损伤的生活质量评估工具。本研究的目的是评估PAR-QoL工具包的使用情况和可用性。2013年12月至2016年11月通过在线调查进行了一项横断面研究。收集了2012年4月至2018年4月的谷歌分析数据。调查部分涉及“使用情况”(行为习惯和实际使用情况)和“可用性”(感知易用性和感知有用性)。邀请任何访问PAR-QoL网站的人完成调查。计算了汇总统计数据和百分比一致性,以描述调查结果和谷歌分析数据。PAR-QoL网站有188,577名用户。访问量最大的五个网页是评估工具,跳出率在77%至90%之间。在46名调查受访者中,67%不是PAR-QoL网站的当前用户,87%打算在未来使用这些资源。目前PAR-QoL网站的使用率有限。可以通过修改导航、删除“用处较小”的组件、确保内容和资源定期更新以及推广该网站来提高PAR-QoL网站的可用性。