Study on the Quality of Life for Patients with Psoriasis in Greece

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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. 

EUROPSO GPP Workshop 2023

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This year’s first EUROPSO GPP Workshop, called “Connecting Psoriasis Clinical Centres of Excellence (CoE) with Patient Organisations (POs) for the Benefit of GPP Patients” will be held virtually, using Zoom platform, on April 26, 2023 at 11am CEST. The official language of the workshop is English and, in addition, we have made available simultaneous interpretation to German and Spanish.

This workshop comes as a sequel, after last year’s first event, held in Amsterdam, under the same topic. Briefly summarised, the main outcomes and outputs from last year were fairly practical. The conclusion was that, if you want to create a community where all people living with GPP are connected to their patient organisation, this should be done in three steps:

  1. Audit POs and CoEs in country/region;
  2. Raise awareness with CoE(s) about the support available from POs for people living with GPP;
  3. Provide POs with GPP patient resources and support tools/services

The main goal of the new workshop would be to achieve multi-stakeholder consensus to realise a psoriasis clinical centre of excellence (CoE) – patient organisation (PO) connection pilot project.

At the workshop, we will be hearing about patient’s perspective and Spanish POs’ success story. We will also hear from the medical professional about the importance of CoE/PO connections
from a medical point of view and what would CoEs need to feel confident
to refer people to patient organisations.

So far, we have members who applied to participate from the Netherlands, Slovenia, Spain, Germany, France, Portugal, Greece and Denmark.

If you are a EUROPSO member organisation and you wish to participate, please send an email to secretariat@euro-pso.org. Please be advised that this event is organised for a limited number of invitees, on a first come first served basis.

In case you are not our member but you want to know the outcome of this workshop, stay tuned, as we plan to issue a report in the upcoming weeks.

EUROPSO is thankful to our sponsor, company Boehringer Ingelheim for their generous support that enabled us to organise this workshop.

EUROPSO Young Round Table 2023: The importance of involving young people in advocacy and campaigning

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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.