Collaboration between patient and pharmacovigilance organizations to gain insight into adults’ experiences with drug use and ADRs for the treatment of ADHD

ABSTRACT

Background: Patient organizations have good access to patients, which can be of interest in gaining knowledge about patients’ experiences with drugs. The aim of this study is to investigate if a collaboration between a pharmacovigilance center and an ADHD patient organization can give more insight in patients’ experiences with drug use and ADRs for the treatment of AD(H)D.

Methods: Pharmacovigilance Centre Lareb and ADHD patient organization Impuls & Woortblind created a web-based questionnaire asking about patients’ experiences with drug use and ADRs. Patients were approached to participate by e-mail and an open web-link. They were also asked to report ADRs through the official reporting form of Lareb.

Results: A total of 1160 patients completed the questionnaire, of which 75.2% of the respondents experienced ADRs and 60.7% discontinued treatment because of an ADR. More than 70% experienced positive effects of their drugs. Additionally, 5.0% of the respondents reported their ADRs to Lareb.

Conclusions: Collaboration with patient organizations provide useful insight into patients’ experiences with drug use and ADRs taking into account establishing clear ‘rules of engagement’. An active approach to collaborate with patient organizations is a way forward to gain more information about drug use and ADRs in a selective cohort.

KEYWORDS:

• Patient organizations
• pharmacovigilance
• adverse drug reaction
• ADR
• drug experiences
• ADHD

Author contributions

G. Weits: conception and design, analysis and interpretation of data, drafting of paper, critical revision for intellectual content and final approval of the version to be published.

L. Härmark: conception and design, drafting of paper, critical revision for intellectual content and final approval of the version to be published.

J. Hartman: conception and design, analysis and interpretation of data and drafting of paper.

A. Kant: conception and design, analysis and interpretation of data and final approval of the version to be published.

All authors agree to be accountable for all aspects of the work.

Declaration of interest

The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

Reviewer disclosures

Peer reviewers on this manuscript have no relevant financial or other relationships to disclose.

Additional information

Funding

This paper was not funded.