European Patient Voice in Gout - How to overcome stigma?
Dr. Gudula Petersen – Grünenthal GmbH
Gout is the most common form of inflammatory arthritis in Europe, yet awareness of it is relatively low. Existing data indicate that Gout is a very painful disease which has a significant impact on patients’ lives. Thus, a European online survey has been designed together with patient and clinical experts to give people with gout a voice.
The online survey was conducted in from June - September 2018. 1,100 gout patients from 14 European countries participated in this project.
The key findings are:
- Gout causes debilitating pain and impacts all aspects of patient´s life
- Although gout is treatable, gout patients are diagnosed late, their disease is not well-controlled and not regularly monitored
- Gout patients do not speak up and hide their disease:
- Patients have a low expectation of their treatment and are resigned, so do not seek better quality care
- There is a stigma surrounding gout and patients may be embarrassed to discuss their condition and flares with their doctor
- Healthcare Professionals are not aware of the impact that gout has on their patients and families
The results and conclusions have been presented in several sessions at the EULAR congress 2019 (June 12-15 in Madrid) and received significant Attention (e.g. presented at the EULAR press Conference on June 12).
- The findings of this survey support the high unmet need of gout patients
- Strategies must be developed to improve diagnosis, monitoring and treatment of gout, which are currently suboptimal
- There is a clear need to educate patients and their doctors about adequate management of gout
- Communication between gout patients and their doctors must be improved