Background At the LUPUS EUROPE [forward abbreviated with LE] 2013 Convention in Paris, Professor N. Costedoat-Chalumet illustrated to the participants the critical issue of adherence to treatment (or more precisely, the lack of it). For many reasons, adhering to the prescribed treatment is a challenge for people living with Lupus, yet, “medicine only works if you take it”. Understanding this area is critically important to helping people with lupus improve their quality of life.
Objectives In LE, we wanted to know the reason(s) for this lack of adherence and how to improve it. Is lack of access also a reason for not adhering to treatment?
Methods Two patient panels were formed to conduct in depth discussion about treatment. For each panel we invited people from our European community through our member groups. The panels were organised to represent different aspects like gender, age, time of diagnosis, main disease area and representing different countries. It was important to LE, that both patient panels were conducted by and for people living with lupus, which gives the participants a feeling of security and being understood: this is very important if you want them to share their experiences openly.
LE organised the first patient panel on November 2nd-4th 2015, bringing together 10 people living with lupus, from 7 countries, to share their experience about “treatment”, with a view to help improving the quality of life of people living with lupus. The second patient panel took place on March 11–13, 2016 bringing together 9 lupus affected people from all over Europe to further explore the burden of living with lupus, and to dive into the burden of daily treatment.
The panels were conducted through a series of interactive presentations, team discussions and working groups.
Results The key findings of both patient panels were:
Because “Treatment” is broad; it is both medicine based and non-drug based, and can be categorised in three ways – core, medical, and well-being; there needs to be a more holistic approach to the patient.
Access includes ease of contact with Health Care Practitioners, support services such as orthotics and quality information as well as availability of medicines.
Patients will take new medicine, provided they understand the reasons why and the side effects.
Each patient is responsible for their own treatment and must realise that a positive mind-set can be decisive for the treatment of the disease.
Patient Organisations have a critical role to play, creating a community, sharing reliable information, providing hope, raising awareness and advocating for lupus.
Conclusions Organising a patient panel with a small closed group of patients on neutral ground in a “safe” environment has proven to be a good way of getting the patients to speak openly about a difficult subject and to reveal things, that they might not tell the health professionals. Through this initiative LE has gathered important information about access and adherence to treatment that we can now use to make suggestions about treatment and implement into our strategic plan for the years to come.
Disclosure of Interest None declared