Background: Raising a child diagnosed with type 1 diabetes can have a profound impact on parents. Having to combine the demands of the disease and treatment with every day parenting tasks can be overwhelming. Easy accessible communication with healthcare professionals was found to support parents in adequately coping with the disease and the disease self-management in everyday life, as well as peer support and tailored disease information. The Internet is regarded to be a suitable mode for delivery of these aspects of care.
Objective and hypotheses: This study describes the assessment of feasibility and efficacy of a web-based patient portal, called Sugarsquare, which delivers online parent-professional communication, online peer support and online disease information.
Method: The hypotheses were tested by means of a multicenter randomized controlled trial. The 189 participants were all parents of a child with type 1 diabetes under the age of 13. Participants were recruited offline from one of seven participating clinics in the Netherlands. User statistics were gathered throughout the 12-month study-period for feasibility, which was assessed in terms of acceptability (did recipients use Sugarsquare?), demand (did recipients continue to use Sugarsquare?), practicability (can recipients access Sugarsquare?) and integration (does using Sugarsquare fit with international guidelines for pediatric diabetes care?). For efficacy (what is the effect of using Sugarsquare on recipients?), self-reported parenting stress (PSI-SF) was assessed at baseline (T0) and at 6 (T1) and 12 (T2) months following baseline.
Results: Data on T2 are currently gathered and analyzed. In the presentation, results and conclusion will be presented along with overview of the intervention and best practice of usage of a web-based patient portal in usual pediatric diabetes care.
20 - 22 Sep 2014
European Society for Paediatric Endocrinology