Hanberger Lena, Ludvigsson Johnny, Nordfeldt Sam
Division of Pediatrics, Department of Clinical and Experimental Medicine, Linköping University, Linköping, Sweden.
J Med Internet Res. 2013 Aug 23;15(8):e175. doi: 10.2196/jmir.2425.
Diabetes requires extensive self-care and comprehensive knowledge, making patient education central to diabetes self-management. Web 2.0 systems have great potential to enhance health information and open new ways for patients and practitioners to communicate.
To develop a Web portal designed to facilitate self-management, including diabetes-related information and social networking functions, and to study its use and effects in pediatric patients with diabetes.
A Web 2.0 portal was developed in collaboration with patients, parents, and practitioners. It offered communication with local practitioners, interaction with peers, and access to relevant information and services. Children and adolescents with diabetes in a geographic population of two pediatric clinics in Sweden were randomized to a group receiving passwords for access to the portal or a control group with no access (n=230) for 1 year. All subjects had access during a second study year. Users' activity was logged by site and page visits. Health-related quality of life (HRQOL), empowerment (DES), and quality of information (QPP) questionnaires were given at baseline and after 1 and 2 study years. Clinical data came from the Swedish pediatric diabetes quality registry SWEDIABKIDS.
There was a continuous flow of site visits, decreasing in summer and Christmas periods. In 119/233 families (51%), someone visited the portal the first study year and 169/484 (35%) the second study year. The outcome variables did not differ between intervention and control group. No adverse treatment or self-care effects were identified. A higher proportion of mothers compared to fathers visited once or more the first year (P<.001) and the second year (P<.001). The patients who had someone in the family visiting the portal 5 times or more, had shorter diabetes duration (P=.006), were younger (P=.008), had lower HbA1c after 1 year of access (P=.010), and were more often girls (P<.001). Peer interaction seems to be a valued aspect.
The Web 2.0 portal may be useful as a complement to traditional care for this target group. Widespread use of a portal would need integration in routine care and promotion by diabetes team members.
International Standard Randomized Controlled Trial Number (ISRCTN):92107365; http://www.controlled-trials.com/ISRCTN92107365/ (Archived by WebCite at http://webcitation.org/6IkiIvtSb).
糖尿病需要广泛的自我护理和全面的知识，这使得患者教育成为糖尿病自我管理的核心。Web 2.0系统在增强健康信息以及为患者和从业者开辟新的交流途径方面具有巨大潜力。
开发一个旨在促进自我管理的门户网站，包括糖尿病相关信息和社交网络功能，并研究其在糖尿病儿科患者中的使用情况和效果。
与患者、家长和从业者合作开发了一个Web 2.0门户网站。它提供与当地从业者的沟通、与同龄人互动以及获取相关信息和服务。瑞典两家儿科诊所所在地区的糖尿病儿童和青少年被随机分为两组，一组获得访问该门户网站的密码，另一组为无访问权限的对照组（n = 230），为期1年。在第二个研究年度，所有受试者均可访问。通过网站和页面访问记录用户活动。在基线以及研究1年和2年后发放与健康相关的生活质量（HRQOL）、赋权（DES）和信息质量（QPP）问卷。临床数据来自瑞典儿科糖尿病质量登记处SWEDIABKIDS。
网站访问量持续不断，在夏季和圣诞节期间有所下降。在119/233个家庭（51%）中，有人在第一个研究年度访问了该门户网站，在第二个研究年度有169/484个家庭（35%）访问。干预组和对照组的结果变量没有差异。未发现不良治疗或自我护理效果。与父亲相比，第一年（P <.001）和第二年（P <.001）有更高比例的母亲访问过一次或更多次。家庭中有某人访问该门户网站5次或更多次的患者，糖尿病病程较短（P =.006），年龄较小（P =.008），访问1年后糖化血红蛋白较低（P =.010），且女孩更为常见（P <.001）。同伴互动似乎是一个重要方面。
Web 2.0门户网站可作为该目标群体传统护理的补充。要广泛使用该门户网站，需要将其整合到常规护理中，并由糖尿病团队成员进行推广。
国际标准随机对照试验编号（ISRCTN）：92107365；http://www.controlled-trials.com/ISRCTN92107365/（由WebCite存档于http://webcitation.org/6IkiIvtSb）
