Background/Purpose

Internet-use is increasing since it is an efficient way to find information. Information obtained via Health Related Internet (HRI) sites, or online peer support groups might increase knowledge and self-management in adolescents and young adults with Juvenile Idiopathic Arthritis (JIA). This study evaluates the frequency of use and perceived relevance of HRI use and its association with demographic, disease-related and psycho-social variables

Methods

In a cross-sectional study, all consecutive JIA patients from the outpatient clinic  (age 10 – 27 years) who gave informed consent were asked to complete a self-reported questionnaire. Frequency of using HRI-sites (regarding information about JIA, medication-use and aspects of JIA related to social life) as well as having online contact with fellow patients were evaluated. Perceived relevance of HRI use and contact with fellow patients were also investigated. Demographic variables, disease activity, medication and emotional behavior and coping were assessed as possible predictors

Results

142 patients were included and 98% had access to internet. 71% had used internet to search general information on JIA, but specific topics such as medication, were less searched for (6-35%). Most favorite sites to look for information were www.reumafonds.nl (Dutch Arthritis Foundation; 20%); www.google.com (16%); www.jong-en-reuma.nl (UMCU hospital site for rheumatic diseases; 14%) and www.printo.it (Pediatric Rheumatology European Society information site; 3%). One in four adolescents had ever visited a forum or had online contact with peers. Most favorite discussion fora were www.reumaforum.nl (peer support for general rheumatic diseases; 14%); www.jeugdreuma.com (parents of children support forum; 5%) and www.Youth-R-Well.com (peer support information and forum for 16-30 year old patients; 5%). Whereas most had used the internet to find information about JIA, the perceived relevance of HRI-sites and of opportunities for online peer contact was rated low (medians respectively 2,0 and 1,0 on a scale 0-10).

Female gender was positively associated with HRI use (P<0.01), other demographic and disease related factors were not associated with HRI use. Coping styles “confrontation” and “reassuring thoughts” were associated with increased HRI use, but only in males. Internalizing and externalizing problem behavior were not significantly associated

Conclusion

Frequency of Health Related Internet use in young people with JIA  was less than expected and considered of low relevance. Besides female gender no demographic and disease related factors were associated. HRI in present form cannot replace regular information as an additional source to increase knowledge