Endocrine Abstracts (2011) 27 P64

Internet-based information resources for young patients and families with diabetes mellitus: a user preference survey

Sarah Hopkins1, Claire Pesterfield2 & Carlo Acerini1

1University of Cambridge, Cambridge, UK; 2Weston Centre, CUHFT, Cambridge, UK.

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 0–18 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.

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