The annual conference of the European Academy of Dermatology and Venereology was held in Berlin from October 11 to 14, 2023. With over 15,000 delegates from 50 countries and 600 speakers in attendance, the conference featured more than 180 sessions showcasing the latest developments in dermatology.

Notably, representatives from patient associations actively participated in the event. Among them were Mr. Jan Koren, the President of Euro-Pso, Mr. David Trigos, the Vice President, and Ms. Tina Koukopoulou,  Member of the Board.

EuroPso took part in the Patients’ Village, utilizing the platform to inform conference delegates about their initiatives and underscore the significance of patient-centric approaches to treatment and information dissemination.

Moreover, Ms. Tina Koukopoulou actively engaged in the Patients’ Task Force, a program initiated in 2022 aimed at fostering collaboration between patients and dermatologists. This initiative amplifies the patient voice, allowing them to share their experiences with the disease and emphasize the importance of effective doctor-patient communication

We at EUROPSO are delighted to be partnering with UCB Pharma to challenge the status quo in psoriasis care through the European-wide ‘Epicensus’ programme. This programme aims to reach agreement (consensus) on important issues that limit the standard of care for psoriasis – and drive positive change – allowing you to live your life to the fullest.

Outcomes from the consensus process were published recently in the medical journal Dermatology and Therapy^[i]. Jan Koren (President of EUROPSO) represents our psoriasis community as the lead author, ensuring that your views are at the heart of the programme.

About psoriasis

Psoriasis is an inflammatory skin disease caused by a dysfunctional immune system, leading to an overgrowth of skin cells. This can cause visible skin irritation such as raised lesions (plaques) and scales, resulting in itching, burning, and stinging sensations^[ii]. Importantly, psoriasis presents both physical and psychological challenges for patients, which can lead to isolation and depression.

Despite advances in the management of psoriasis, there is still room for improving patient care. However, for meaningful improvements to be identified and made reality, it is essential to recognise the views of everyone involved. This multiple stakeholder approach is unique to Epicensus.

What is the Epicensus programme?

The Epicensus programme brings together three important groups of people (stakeholders): dermatologists, payors, and patient representatives (such as EUROPSO), with a focus on improving the standard of care.

How is the Epicensus programme carried out?

First, a questionnaire was sent out to the stakeholder groups to identify current problems in the standard of care for psoriasis. Following this, eight key themes for change were recognised:

1. Improve healthcare systems to better support multidisciplinary team working and digital services
2. Optimise real-world data generation and use
3. Improve patient access
4. Elevate quality-of-life measures as the most important outcomes
5. Involve patients in people-centred and personalised approaches to care
6. Improve the relevance and reach of guidelines
7. Education
8. Multistakeholder engagement

Next, a panel of experts representing the different stakeholder groups anonymously took part in a consensus process (Delphi) to reach agreement on statements describing the current problems in psoriasis care, each related to the key themes.

Interestingly, several problems that were revealed were similar to some identified over a decade ago. This highlights that simply recognising what needs to change is not enough to bring about improvements: action must be taken.

Therefore, the panel of experts then met to produce specific ‘Calls to Action’ – practical steps that, if put into practice, should contribute to an improvement in the standard of care for people living with psoriasis.

Raising awareness of psoriasis and Epicensus programme

The outcomes of Epicensus were published in Dermatology and Therapy in December 2022, co-authored by the expert panel that participated in the programme^[i].

This paper opens a channel of communication to stakeholders who would not usually work together, to address problems in psoriasis care. Additionally, it helps identify where patients would benefit most from an elevation to the standard of care. It proposes a clear call-to-action framework, which increases the likelihood of real and beneficial change.

The call now goes out to you, the psoriasis community, to help bring about practical improvements in care for patients across Europe.

Read the full paper here^*[i] and ask yourself what you can do to help turn the calls to action into a better reality for people living with psoriasis.

^*Featuring a plain language summary and visual representations to enhance accessibility and educational value – access these digital features here.

References:

• Koren J, Lambert JLW, Thomsen SF, et al. Evaluating the Standard of Care for Patients with Psoriasis: ‘Calls to Action’ from Epicensus, a Multistakeholder Pan-European Initiative. Dermatol Ther (Heidelb). 2023;13:245–268
• National Psoriasis Foundation. About psoriasis. https://www.psoriasis.org/about-psoriasis/. Accessed: April 2023.

Family planning involves preparing for or preventing having children. This means thinking about birth control, fertility and pregnancy. It is important for all women, whether you want a family, do not want a family, or are not sure. As pregnancies are not always planned,¹ it is good to know the right information, even if you do not want a family.

Family planning is important for women of childbearing age, particularly for those with psoriasis.¹ You may have questions about how your psoriasis could affect your family planning. This could include any impact on your fertility, pregnancy and breastfeeding.

Some women feel they have to choose between pregnancy and taking their psoriasis treatment – they might even stop treatment without speaking with their dermatologist (skin specialist).² But you do not necessarily need to choose! There are treatments suitable during pregnancy and breastfeeding that can help you control your psoriasis.^1,3

Pregnancy is possible in psoriasis!

Psoriasis presents as inflammation of the skin.^1,4 Controlling this inflammation is important before and during pregnancy, as it can lead to better outcomes for you and your baby.^1,3 Some treatments can transfer to your baby,¹ so it is important to understand which treatments are less likely to transfer to your baby during pregnancy or breastfeeding.  

If needed, your dermatologist can help you choose a treatment that is pregnancy-compatible.^1,2 It is important to talk to your dermatologist about this early, so they can give you all the information you need to understand the available treatments. Do not worry if you are unsure about your plans for a family, or if your plans change. It is still important to keep talking to your doctor about any possible changes.

Your dermatologist can help you select a treatment that will treat you and not your baby

Experts have written guidelines to help dermatologists give you advice about your psoriasis treatment. These guidelines consider the evidence for treatment use before, during and after pregnancy. They are written for doctors, but they are available to the public if you want to know more.

Together, you and your dermatologist can talk about the best treatment option for you, as well as your fears or concerns around your special journey. Together, you can make a shared decision on the most suitable plan for you and your baby.⁵

Key points to remember:

References

1. Gottlieb AB, Ryan C, Murase JE. Clinical Considerations for the Management of Psoriasis in Women. Int J Womens Dermatol. 2019;5(3):141–150.
2. De Simone C, Calabrese L, Balato A, Cannavò SP, Dattola A, Esposito M et al. Psoriasis and its management in women of childbearing age: tools to increase awareness in dermatologists and patients. G Ital Dermatol Venereol. 2020;155(4):434–440.
3. Allen KD, Kiefer MK, Butnariu M, Afzali A. Pregnant Women With Immune Mediated Inflammatory Diseases Who Discontinue Biologics Have Higher Rates of Disease Flare. Arch Gynecol Obstet. 2022;306(6):1929–1937.
4. Lam M, Steen J, Lu JD and Vender R. The incidence and prevalence of uveitis in psoriasis: a systematic review and meta-analysis. J Cutan Med Surg. 2020;24(6):601–607.
5. Morrison T, Johnson J, Baghoomian W, Hamilton A, Simpson E, Greiling T et al. Shared Decision-Making in Dermatology: A Scoping Review. JAMA Dermatol.
   2021;157(3):330–337. 

This article was developed and funded by UCB.

Date of preparation: July 2023

EU-N-DA-PSO-2300040

© UCB Biopharma SRL, 2023. All rights reserved.

A ground-breaking project co-implemented by ‘Epidermia’

In a trailblazing study- spearheaded by ‘Epidermia’ (Panhellenic Association of Patients with Psoriasis and Psoriatic Arthritis), in collaboration with ‘National and Kapodistrian University of Athens’ and the health economics consulting company ‘Econcare’ – a survey was conducted in March-April 2021 in Greece, to investigate the quality of life of patients with moderate to severe psoriasis and the factors that may influence this. The study looked into the needs of patients, asked whether these are met by the relevant systems of health and social care provision, and identified the gaps, unmet needs and areas for improvement associated with of the quality of life of patients with psoriatic disease.

This study is an optimistic step towards patients’ voices, being part of scientific research approaches to progress the field of treatment and better quality of life.

The results of the study were published in October 2022 in the prestigious ‘Italian Journal of Dermatology and Venerology’ (Edizoni Minerva Medica), entitled Patients’ satisfaction, unmet needs, and treatment benefits in moderate to severe psoriasis in Greece: results from a cross-sectional survey.

The President and the Treasurer of Epidermia (Renos Vamvakousis and Tina Koukopoulou respectively) participated in the formulation of the project and writing the scientific paper, with the cooperation of Georgia Kourlabas and Garifalia Stefanou from Econcare and the esteemed contribution of Professor Ioannis Ifantopoulos, of the National and Kapodistrian University of Athens.

The study involved 380 patients – all members of ‘Epidermia’ of whom 314 have moderate to severe psoriasis.

The article analyzes the profile of the participants (patients with psoriasis), the types of treatment they are undergoing, and the duration of time from the onset of the disease until its correct diagnosis. The study gave a voice to patients to express their needs not only with regard to their treatment for psoriasis, but also with reference to how their condition affects their quality of life and what areas of needs are unmet. These are presented in the article, along with the opinions of the patients about the benefits and their satisfaction with the treatment regimens they follow. In addition, the impact of the disease on the daily life of the participants is recorded as well as the rate of patients’ compliance with their treatment.

 Epidermia is grateful for the fruitful cooperation of all the researchers and scientists involved, and continues to work to have patients’ voices included at all stages of medical research, and treatment for dermatological conditions.

For the complete article, please follow the link here. 

Motivating young patients to exit their comfort zone and become patient advocates

Same as in any other therapeutic area, involving young people in PsO/ PsA advocacy and campaigning is essential to building a more diverse and inclusive movement that reflects the needs and concerns of all stakeholders. By providing opportunities for young people to engage, lead, and learn, we can ensure that the next generation of advocates and leaders is well-prepared to continue the fight for important causes in the future.

As the first step towards empowering future young patient advocates, EUROPSO organised a Young Round Table (YRT) past weekend, on April 1, 2023 in Brussels, Belgium.

Immediately after this workshop meeting, we spoke with Jan Koren, the President of EUROPSO, about models to get young people involved in advocacy and campaigning.

„If I wanted to summarise the most important models for involving young people, I would definitely shortlist it to: Youth Advisory Councils, Peer-to-Peer Advocacy, Youth-Led Campaigns, Mentorship Programs, and, inevitably at these times, Digital Campaigns“ says Koren.

Establishing youth advisory councils would allow young people to provide input and feedback on advocacy and campaigning efforts can help ensure that their voices are heard and their perspectives are valued.

As for the peer support, encouraging young people to advocate for causes they care about within their own peer groups, such as through social media or school-based campaigns, can help build momentum and engagement.

According to Maria Helena Guia, a young patient advocate from Portugal and attendee of EUROPSO’s workshop, “The sharing of people from different countries is very enriching and expands everyone’s vision. Participants were left with lights on how to create an advocacy plan, a tool that could be quite useful. There are young people with a lot of desire to make a difference, but they have to be motivated not to stop. It is important that the organization be more assertive about the expectations of the meetings.”

Empowering young people to take the lead on advocacy and campaigning efforts, such as through youth-led lobbying for policy changes can help build a sense of ownership and investment in the cause. “Mental health and psoriasis, social media or internet in general“ are the subjects another participant of this year’s YRT, Luna Fernandez from Spain would like to see in workshops at the Annual Members Meeting in November this year. According to her, three new key learnings from this workshop are: „1. Very different experiences in different countries; 2. Despite this, very similar preoccupations in us, young patients, and 3) New knowledge in organisation governance.“

Since young people naturally lack life experience, pairing them with experienced advocates and campaigners through mentorship programs can help build skills and provide opportunities for growth and development.

Finally, leveraging digital platforms and tools, such as social media or online petitions, can help young people engage in advocacy and campaigning efforts on a global scale and reach a wider audience.

„We plan to do everything we can, as EUROPSO, to establish these models in the next couple of years. Our first step was to hold this YRT workshop in Brussels last weekend and make basis for establishing a YoungEuropso Committee. However, there are many obstacles that make these aforementioned models hard to realise and addressing these obstacles requires a concerted effort by healthcare organisations, patient advocacy groups, and policymakers to create inclusive and supportive environments that empower young patient advocates to make an impact and advance in their careers“ concluded Koren.