Collaboration patient organisations for more knowledge about drug use

75% of the adults using medication for ADHD experience side effects. The most frequently mentioned side effects are described in the patient information leaflets. In general, respondents experienced positive effects of the medication on their symptoms. Experiencing side effects or lack of effect can be reason to stop medication use.

These are the results of a survey conducted in June 2015 by the Dutch Association for people with AD(H)D, dyscalculia and dyslexia ‘Impuls & Woortblind' in collaboration with the Netherlands Pharmacovigilance Centre Lareb among users of ADHD medications who were 16 years or older.

This online survey was send by e-mail to members of Impuls & Woortblind and to clients in two private practices. Also professionals who are member of the Dutch ADHD network could send the link of the survey to the their clients. A total of 1160 respondents filled out the questionnaire and after applying exclusion criteria 848 of those could be used for further analysis. The questionnaire contained questions about experiences with drug use and side effects and the received information about possible risks and side effects.

On the last page of the survey, the respondents were asked to report their experienced side effects to Lareb. All respondents who mentioned a side effect and provided their e-mail address to be contacted for further information were asked to report their side effects to Lareb. By the end of September 2015 44 respondents had filled out a report.

Collaboration with patient organisations is important to raise the awareness about pharmacovigilance among the general public. It can also be used to collect information about drug use and adverse drug reactions in a selected population.