Background: In spite of the relapsing nature of inflammatory
bowel diseases (IBD), on average, 40% of IBD patients are nonadherent
to treatments. On the other hand, they are often
actively seeking information on their disease. The relationship
between information seeking behaviour and adherence to
treatment is poorly documented. The main aim of this study
was to examine this association among IBD patients.
Methods: We used data from the Swiss IBD cohort study.
Baseline data included questions on adherence to ongoing
treatments. A survey was conducted in October 2009 to assess
information sources and themes searched by patients. Crude
odds ratio (OR) and 95% CI were calculated for the association
between adherence and information seeking. Adjustment
for potential confounders and main known risk factors was
performed using multivariate logistic regression. Differences
in the proportions of information sources and themes were
compared between adherent and non-adherent patients.
Results: The number of patients eligible was 488. Nineteen
percent (N = 99) were non-adherent to treatment and one
third (N = 159) were active information seekers. Crude OR
for being non-adherent was 69% higher among information
seekers compared to non-seekers (OR = 1.69; 95%CI 0.99 2.87).
Adjusted OR for non-adherence was OR = 2.39 (95%CI 1.32 4.34)
for information seekers compared to non-seekers. Family
doctors were 15.2% more often consulted (p = 0.019) among
patients who were adherent to treatment compared to those
who were not, as were books and TV (+13.1%; p = 0.048). No
difference was observed for internet or gastroenterologists as
sources of information. Themes of information linked to tips for
disease management were 14.2% more often searched among
non-adherent patients (p = 0.028) compared to adherent. No
difference was observed for the other themes (research and
development on IBD, therapies, basic information on the
disease, patients' experiences sharing, miscellaneous).
Conclusions: Active information seeking was shown to be
strongly associated with non-adherence to treatment in a
population of IBD patients in Switzerland. Surprisingly themes
related to therapies were not especially those on which nonadherent
patients focused. Indeed, management of symptoms
and everyday life with the disease seemed to be the most
pressing information concerns of patients. Results suggest
that the family doctor plays an important role in the
multidisciplinary care approach needed for IBD patients.