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Sunday September 6, 2015 – Leonardo Hotel – Vienna – LUPUS EUROPE COUNCIL

Sun, Skin & lupus
We start the day with a discussion with Professor Annegret Kuhn on sun, skin and lupus. Professor Kuhn has worked for 20 years on Lupus in dermatology and chairs the European Society on Cutane Lupus Erythematosus (EUSCLE). With that group, she is working at setting new guidelines that doctors can use to give advice. Annegret also won the Galderma Skin Pact Award for Community Leadership at the Skin Congress in June that will help fund on a project prospect a pan European study on clinical advice on sun protection and reimbursement of costs to patients.
In the morning session Annegret presents the EUSCLE recommendations, which are still confidential, and asks for our feedback and comments on those. 70% of lupus patients have some dermatologic signs, so it is very frequent. From a classification, Cutaneous lupus (CLE) is for people who mostly have skin manifestations, but many also have Systemic Lupus (SLE) at mild or severe levels. The recommendations are addressing CLE and SLE patients with skin manifestations. So far, no drug has ever been approved for skin, so everything we do here is off label. Some trials have taken place, some drugs are in process and we are confident that there will be some specific treatment for skin lupus soon.
In 2009 German guidelines were developed with a 3 step protocol: 1st) prevention (UV protection, but also nicotine abstinence), 2nd) Topical/physical treatment (corticosteroids, Topical calcineurin inhibitors and more), and 3rd) systemic treatment, with the full 3 levels of SLE type handling.
Annegret interacts with the team on the recommendations. The slides will be distributed on a confidential basis, and LUPUS EUROPE will collect feedback that will be sent to Annegret.
Annegret then addresses the situation of sun and skin. UV is an important factor in the pathogenesis of LE, and while sunscreens are safe and cost-effective preventive measures, there are challenges with insufficient recommendation for sunscreen application by physicians, lack of information to patients, and lack of reimbursement (UK is the only one in the room where sunscreen is provided free of charge). A German lobby project is started, which leads to a survey underway in Germany (with setting up of a randomised trial) to backup the claims.
The project is now to have a web-based questionnaire covering all of Europe to assess parameters such as frequency of application, sun protection factor, amount of sunscreen, and the efficiency. Data will be collected centrally. The questionnaire will be translated. This should help drive prevention of flares, lower disease activity, and reimbursement as a goal.
Lupus UK offers that they have a great booklet to share on the issue of sun protection.

Council Session – Notes reserved to Council members
See Council minutes

Panel on Treatment:
After the council session and lunch, a workshop on treatment took place as a follow up to the Helsinki Workshop, Brussels patient panel, and in preparation of the next panel on treatment.

A key element of living with lupus is the need to continue treatment over the long run. While following treatment carries the promise or the hope for a better life, it also brings constraints, day after day recollection that the disease is there even if not active, and multiple side effects that accumulate over the years. Treatment in itself can then be perceived as a burden on quality of life, and adherence to treatment diminishes.
A first patients’ panel wave explored the concept of treatment in general, as well as key factors affecting adherence to treatment, with a focus on core treatment in a hospital environment, through infusions. The working definition of treatment that was used is as elaborated in Helsinki “Any product or activity that aims at improving the person with lupus’ quality of life.” and this includes core treatment, medical and well being (quality of life).

The patient panel resulted in three letters being written (to doctors, patient organisations, and people with lupus), as well as 7 videos (Message to someone just diagnosed; One disease, many symptoms; Myths and misunderstandings; What it means to friends and family; My life with lupus; Hopes for the future; The importance of World Lupus Day).
Convention participants were split in 4 groups and asked to consider how best to use each of the materials that came out of the first panel.

With regards to the letter to the medical community, suggestions were made to (i) invite yourself to present at medical monthly meeting, in doctors training session (“meet the patient” for trainees), or (ii) to translate the letter, copy it on your national organization’s letterhead and drop it into the suggestion box, (iii) leverage in T2T in short form for quick reference, or (iv) translate and submit to medical journal for WLD, or even transmit to Ministry of Health for further diffusion(?).

The letter to patient organizations raised the question of better direction of good quality information. We could react to that by having a Twitter style headline which is repeated once every day for a week, to survey member groups on how to better use information, but also to search for best practices: diabetes, MS, cancer patient groups.

The letter to patients is a great tool particularly for newly diagnosed people. it should be available on webpages and blogs, through patient organizations. hospitals and outpatient clinics. An idea would be to have a welcome pack at hospitals (with additional info, etc…). It would be good to always have copies to hand out, particularly if they are personalized by adding contact information, and visually more catchy.
With regards to the videos, the message on the invisibility of the disease was perceived as the most important. Some mentioned that a campaign for awareness can be positive or negative, and that a preliminary video expressing a vision for hope and inspiration would be very beneficial. The videos should be available for use by a broad audience: employers, neighbors, community, school, newly diagnosed patients, pharmas, doctors and the society in general. Next videos could focus on more hope/inspiration, and lessons on how to live with SLE including professional expectations.

Our next wave of panels will focus on the burden of treatment over the long run, looking at how day-to-day repeat treatment is perceived by lupus patients, and what learning we can take from that understanding to improve the quality of life of people living with lupus. To prepare for this next panel, the teams focused at identifying those questions that should be raised in a next panel and/or in a patient survey. The proposed questions can be grouped into:

Highly qualitative questions, suited to a panel:
How do you view day-to-day treatment? Is it the same everyday? What negatives do you associate with it? Is any part of the treatment more negatively tainted? Is there something that would make it easier to accept pills for life? (what?) Could technology help remind or motivate the person (an app? Something else?) What could make us adhere better to treatment? What did you change to improve? How did you collaborate with your doctor to improve your treatment? How did you get information and confidence to talk with the doctor? How did the struggle with benefit/burden influence you psychologically? Does the number of pills affect how you take them?

Containing an element that could be suited to a questionnaire:
Do you use technology to help remind or motivate you to take your treatment?
Are taking pills part of your daily routine (if no, why not? If yes, how did it become routine?)
Would visualization vs text help adherence?
Do you think you are well informed on treatment? Risk / benefit?
Do you feel you can question your specialist? Do you listen to the doctor? Do you follow the prescription strictly, or do you “self administer?” What pills do you skip, what not? When? (Why?) Do you tell the doctor when you don’t take pills?
Questions around packaging (in portions?), dosage boxes, amount (why so many), taste (coating with flavor)
How do you view D2D treatment benefit/burden? (in relation with duration/part of the disease cycle: - at start, after symptoms diminish, in the long run)
Do you feel like medication works despite side effects? Did you feel more sick with a new medication?
Have you experienced side effects? Did they get better over time? Did your doctor inform you about side effects?
Is your treatment individualized?
Where do you learn about how to take the medication?
Does your medication affect your mood? Your energy?
Do you have troubles getting the pills? Is there an impact of costs? Availability? Prescription vs. supply you’re your prescription the same as supplied by pharmacies? Is the drug too expensive and therefore not prescribed?
Do you take your pills even in remission? Do you take them only if you feel badly?
Does your family have an impact on the way you take your medicine?

This appreciated input will be used by Davide Mazzoni, Bernadette Van Leeuw and Alain Cornet to prepare and organize the Patient Panel II, early 2016. This panel will use Interpretative Phenomenological Analysis to deeply and systematically analyze data, with the hope to lead to publication & further usage

Members are asked to support by identifying 8 or 9 patients for the Panel. These should be “new” people, uninvolved with LUPUS EUROPE so far, and preferably also little involved in running the local organization so that they express an unbiased, “untrained” experience. They should speak fairly good English, and be of geographic, age and gender diversity. As a prerequisite for attending the panel, they will need to have a 45 minutes Skype interview, recorded and transcribed.

With regard to the other questions, we are considering a questionnaire on the burden of lupus, particularly on the aspects on treatment on the long run (pills for life). This questionnaire would be distributed through different channels (including via doctors and via local organizations) to check potential bias. As funding and specifics remain to be agreed and discussed, we will come back on this initiative at some later point.

The panel is closed on this final note, and Kirsten closes the convention, inviting everyone to join us in a year for the 2016 Lupus Europe Convention, in Würzburg, Germany.