Background: Internet-based education and information resources for young people and families with DM have increased, yet the extent of use and perceived value among this patient group is uncertain. We conducted a questionnaire-based survey of parents and carers experience of currently available DM internet-based resources.
Objective: To assess i) level of internet use, ii) perceived quality of patient support information currently available, iii) need for a local diabetes clinic website and iv) preferred website content.
Method: Questionnaire survey delivered to the carers of a random sample of children and young people with DM (age 018 years) attending a tertiary paediatric diabetes clinic (n 280). Quality and perceived value of internet-based information was rated from 1 (poor) to 5 (high).
Results: Seventy-four carers completed the questionnaire. 96% have home internet access, although only 76% used this to access information about DM. Topics most frequently searched were: equipment (blood glucose meters, pens and pumps (68%)), what is diabetes (64%), carbohydrate counting (62%) and long-term complications (62%). Least searched for included how to give insulin (32%) and instructions about how to use kit (34%).
Information on what is diabetes was rated highest in quality (mean (S.D.)=4.5 (0.6)) whereas information relating to diabetes in school (3.0 (1.3)) and support meetings and other events (3.0 (1.3)) was rated lowest. 81 and 34% of users respectively found the Diabetes UK and JDRF websites useful. Overall users found information from external internet sites untrustworthy (25%), distressing (15%), too technical (11%), inadequate (19%) or excessive (9%), with 71% preferring to receive information about DM from a trusted local clinic website.
Conclusion: Internet use amongst young patients and families with DM is high. The quality of information is rated highly variable with the majority of users preferring to receive this from a trusted local website.
09 - 11 Nov 2011
British Society for Paediatric Endocrinology and Diabetes