AIM: To develop a web portal designed to facilitate self-management, including diabetes-related information and social networking functions, and study its use and effects in young patients with diabetes.
DESIGN AND METHOD: A Web 2.0 portal was developed in collaboration with patients, parents and their 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 paediatric clinics in Sweden were randomized to a group (n=233) receiving passwords for access to the portal, or a control group with no access (n=230) for one year. All subjects had access during a second study year. The portal was used on users’ own initiative only without directions from health care professionals or researchers.
Measures: User activity by site visits and page visits logged per user. Health-related quality of life (HRQOL), empowerment (DES), and quality of information (QPP) questionnaires at baseline and after one and two study years. Clinical data from the Swedish paediatric diabetes quality registry SWEDIABKIDS.
RESULTS: There was a continuous flow of site visits, but decreasing in summer and Christmas periods. In 119/233 families (51%) someone visited the portal the first study year and in 169/484 (35%) the second study year. More frequent page visits were seen on social networking with peers, such as blogs, stories and discussions, followed by news from the local diabetes teams.
No differences were found regarding outcome variables between intervention and control group. No adverse effects related to the treatment or self-care were identified. A higher proportion of mothers compared to fathers visited once or more the first (p<0.001) and the second year (p<0.001). Those patients where someone in the family visited five times or more (active users), n=68, had shorter diabetes duration (p= 0.006), were younger (p=0.008), had lower HbA1c after one year of access (p=0.010), and were more often girls (p<0.001).
Conclusions: The Web 2.0 portal appears useful as a complement to traditional care for this target group. Peer interaction seems to be a valued aspect. The use of a portal probably needs to be integrated in routine care and promoted e.g. by diabetes team members, advertisements and newsletters. Research on electronic communication targeting young people with long-term health problems need to focus more on use of Web 2.0 including gender aspects.
Type 1 diabetes, children, adolescent, e-health, patient education, intervention, metabolic control