The hidden scars: Stigmatization a major impact of skin diseases across Europe

(Lugano, Monday, 9 October 2023) A major pan-European study has revealed that almost all patients affected by skin diseases face embarrassment, with the psychological burden compounding the physical impact of living with the disease.^1,2

The Burden of Skin Disease in Europe, published today in the Journal of the European Academy of Dermatology and Venereology (JEADV), analysed 19,015 individuals with a range of skin diseases and revealed the huge psychological toll of living with a disease. The diseases examined included, amongst others, fungal skin infections, acne, atopic dermatitis (eczema), alopecia, psoriasis and sexually transmitted diseases (STDs).

With high levels of stigmatisation, about 9 in 10 (88%) patients with skin disease considered their disease to be embarrassing in their personal life, with 83% reporting the same in their working life.¹ Furthermore, almost 25% reported to have changed their professional activity due to their disease, and work life was particularly impaired in patients with acne (48%) and urticaria (60%).¹

Previous findings from The Burden of Skin Disease in Europe study show that almost half of the adult European population declared having at least one dermatological disease.³ The prevalence of skin diseases is likely to be significantly higher than this, and 40% of skin cancers and STD diagnoses remain unrecognised on the first consultation⁴ and diagnosed at later medical consultations.

Prof. Marie-Aleth Richard, lead author of the research,⁵ comments, “This study highlights the alarming psychosocial challenge faced by individuals with skin diseases and underscores the need to provide psychological support to patients, and to mitigate the stigmatisation that patients endure in their personal and professional lives. With a profound impact on mental health, these common diseases exert a significant toll on patients’ quality of life.”

Surprisingly, despite their high prevalence, and in some cases severe psychological and physical impact, skin diseases receive limited policy, research and funding attention.⁶

The journey of patients with skin diseases is frequently complex, with many patients avoiding medical consultations.⁴ This, in turn, contributes to the diseases being under recognised and underfunded, with low awareness of the true burden that skin diseases cause on the European population. Many of the issues contributing to medical avoidance in skin diseases – which include a low perceived need for care and financial reasons – can be resolved with improved health literacy and consequential patient empowerment, ensuring that patients are better informed about their treatment possibilities.⁷

Despite numerous challenges across the field, public perception of dermatologists across the continent is encouraging. Eight in 10 (81%) patients report that they are satisfied with their dermatology service and the medical information they receive.⁸

“The burden is huge”, adds Prof. Myrto Trakatelli, Chair of EADV’s Advocacy Working Group. “In spite of this, skin diseases are systematically underestimated, and only a small number of interventions on tackling associated stigmatisation have been published.”

“Urgent action must now be taken to raise awareness of the impact that skin diseases have on individuals, economies and society and to ensure that patients receive the holistic care they need, including mental health support. Eliminating stigma across the field is of paramount importance to really improve the life of the many patients living with skin diseases, so we call on policymakers to take concerted action to address both the physical and psychological burden of skin diseases.”

END

Notes to Editors

A reference of The Journal of the European Academy of Dermatology and Venereology (JEADV) must be included when communicating any information within this press release.

Contact:

For further information or to arrange an interview, please contact press@eadv.org.

About EADV

Founded in 1987, EADV is a non-profit organisation with a vision to form a premier European Dermatology-Venereology Society. The Academy counts over 9000 members from 120 countries, providing a valuable service for every type of dermatologist-venereologist professional. The EADV is dedicated to advancing patient care, education and research by providing a unique platform to bring people together and share ideas.

This year, the EADV Congress will take place in Berlin, Germany, and online from
11–14 October 2023.

Find out more via the EADV website: https://www.eadv.org/

About the JEADV

The Journal of the European Academy of Dermatology and Venereology (JEADV) publishes articles of general and practical interest in the field of dermatology and venereology, including clinical and basic science topics, as well as research with practical implications. It does so through editorials, review and practice articles, original papers of general interest, short reports, letters to the editor, features and EADV announcements.

About the Burden of Skin Disease in Europe survey

The EADV’s Burden of Skin Disease in Europe survey is a multinational, cross-sectional online study of a representative sample of the general public with or without skin disease above 18 years old from 27 European countries, including 24 countries from the European Union as well as the UK, Norway and Switzerland.

The main objective of the study was to evaluate the prevalence of dermatological or venereological diseases. Secondary objectives aimed to (1) detail reasons for consulting a dermatologist and dermatological needs from the general population; (2) the impact of the skin diseases to affected patients in terms of QIL, stigmatisation, burden and the impact in their daily life; (3) the public perception of cutaneous diseases; (4) to characterise the care pathways and the role of dermatologists compared with general practitioners (GPs), pharmacists or nurses in the care of skin diseases; (5) to determine the prescribed treatment and (6) capture the reactions and confidence towards dermatologists in the various countries of the European Union and the level of satisfaction with his or her interventions.

References

1. Gisondi P, Puig L, Richard MA , Paul C, Nijsten T, Taieb C, et al. for the EADV Burden of Skin Diseases Project Team. Quality of life and stigmatization in people with skin diseases in Europe: A large survey from the ‘burden of skin diseases’ EADV project. J Eur Acad Dermatol Venereol. 2023; 37 (Suppl. 7): 6 – 14. https://doi.org/10.1111/jdv.18917
2. Trialonis- Suthakharan N, Pattinson R, Tahmasebi Gandomkari N, Austin J, Janus C, Courtier N, et al. Patient prioritisation of impact items to develop the patient- reported impact of dermatological diseases (PRIDD) measure: European Delphi data. J Eur Acad Dermatol Venereol. 2023; 37 (Suppl. 7): 40 – 50. https://doi.org/10.1111/jdv.19266
3. Editorial: The burden of skin disease in Europe. J Eur Acad Dermatol Venereol. 2023; 37 (Suppl. 7).
4. Richard MA, Paul C, Nijsten T, Gisondi P, Salavastru C, Taieb C, et al. The journey of patients with skin diseases from the first consultation to the diagnosis in a representative sample of the European general population from the EADV burden of skin diseases study. J Eur Acad Dermatol Venereol. 2023; 37 (Suppl. 7): 17 – 24. https://doi.org/10.1111/jdv.18916
5. McGrath BM, Hughes O. The dermatology patient journey from initial consultation to diagnosis. J Eur Acad Dermatol Venereol. 2023;37(Suppl. 7): 25 – 26. https://doi.org/10.1111/jdv.18987 ‘
6. Augustin M, John SM. Learning lessons for the battle against disease burden and stigmatization in chronic skin diseases: Call for action needed? J Eur Acad Dermatol Venereol. 2023; 37(Suppl. 7): 15 – 16. https://doi.org/10.1111/jdv.18985
7. Richard MA, Paul C, Nijsten T, Gisondi P, Salavastru C, Taieb C, et al. for the EADV burden of skin diseases project team. Public perception of dermatologists in Europe: Results from a population based survey. J Eur Acad Dermatol Venereol. 2023; 37 (Suppl. 7): 27 – 37. https://doi.org/10.1111/jdv.18988
8. Tognetti L, Pasquali P, Moscarella E, Rubegni P. The perception of dermatologists across Europe: Comments from the tele-dermatology task force. J Eur Acad Dermatol Venereol. 2023; 37(Suppl. 7): 38 – 39. https://doi.org/10.1111/jdv.18986