The international society of atopic dermatitis held a meeting in Gdańsk to discuss the organization of care in atopic dermatitis

A pre-meeting on the Organisation of Care in Atopic Dermatitis was organised on the 31st of August 2023 in Gdańsk under the leadership and guidance of the International Society of Atopic Dermatitis (ISAD), with the objective of breaking new grounds in clinical practice and the organisation of care for patients with atopic dermatitis (AD).

Since 2008, under the leadership of Dr. Roberto TAKAOKA, the ISAD organises pre-meetings dedicated to the Organisation of Care in Atopic Dermatitis and possible collaborations among patients, physicians and other healthcare professionals worldwide. Design thinking and social innovation were also employed to tackle the problem of AD in Africa and Latin America.

Focused on the daily management of atopic patients, the programme explored the specificities of patient care with examples from Poland, Africa, United States and Brazil. This exchange facilitated the gathering of individuals from diverse backgrounds, all connected by their concern for eczema. For the first time, African representatives, both experts and patients, were hosted, having been invited by the World Health Organisation.

The more we familiarise ourselves with different perspectives worldwide, the deeper our insights into the origins and management of this intriguing and captivating disease become.

The chairs of this meeting were Pr Jean-François STALDER and Dr Roberto TAKAOKA.

The recording of this meeting can be watched on the ISAD website.¹

Speaker: Dr Magdalena TRZECIAK from the Department of Dermatology, Venereology, and Allergology of Gdansk, Organizer of the ISAD meeting.

After a brief introduction to the causes and burden of AD, presented the role of stakeholders and the needs of patients regarding therapeutic education, including the roles of online and in-person education.

A variety of doctors manage AD patient care: general practitioners, pediatricians, allergists, and dermatologists. A recent survey indicates that 75% of adult patients feel they haven't received answers to crucial questions about AD, highlighting a significant gap in patient education. They emphasise a lack of information on using local treatments. Patients express a need for information and personalised advice on using emollient therapy and bathing. There is a consistent reluctance among patients to use Topical Corticosteroids (TCS), with 90% delaying their use as long as possible and ceasing their use prematurely, indicating a need for improved education and reassurance about these treatments.

Globally, phobia towards topical treatments is extremely common, leading to patient reluctance and rapid discontinuation of topical corticosteroids and calcineurin inhibitors (TCI). A significant portion of patients with AD (77%) expressed a desire for a mobile application to manage their condition, emphasising itch relief and a “flare-up calendar” to identify trigger factors.

This summary provides an overview of the key points and data focusing on the need, personnel, tools, and initiatives related to TPE for AD in Poland. A notable strength of this presentation is the specificity of the “solidarity” in Gdansk's approach, highlighting a multidisciplinary method involving various specialties to emphasise the importance of a collaborative and patient-centred approach in managing AD.

Supplementary material 1: Dr Magdalena TRZECIAK - Therapeutic Patient Education in Poland HCP Perspective.

Speaker: Joanna MAŁACZYŃSKA-RENTFLEISZ, Director of the Sport for Health Foundation.

Since its inception in 2011, the Sport For Health Foundation has focused on the challenges faced by patients with AD. AD is not only a medical condition but also brings social problems with multiple consequences: work and school absences, reduced physical activity, depression, strained family relationships, expensive treatments, and long waits for medical appointments.

The challenge is exacerbated by the increasing patient numbers (approximately 1 million children and half a million adults in Poland suffer from AD) and the decreasing number of doctors. According to the Polish Society of Allergology and Dermatology's guidelines, health-promoting education is crucial.

To ensure effective solutions and patient well-being, integration into a patient-centred system is vital.

Finally, we must remember that AD is not just a single-dimensional disease but a multi-level issue affecting self-esteem, mental health, and often defining what is achievable (Video 1).

Supplementary material 2: Joanna-MALACZYNSKA-RENTFLEISZ - Is there a system of support for patients suffering from atopic dermatitis in Poland in the field of health education?

Speaker: Pr Ousmane FAYE, Director of the Hospital of Dermatology, Bamako, Mali.

Dr Faye presented numerous illustrations of AD's clinical aspects on black skin. AD is an itchy, chronic, or chronically relapsing inflammatory skin condition that often begins in early childhood (usually before 2 years of age).

The presentation highlighted the clinical specificities of AD in Africa, emphasising the impact of skin pigmentation on the appearance of dermatological lesions and socio-cultural practices (herbal medicine, cataplasms, concept of chronic disease).

In infancy, lesions start around 2–3 months of age, with itching or rubbing of eczematous lesions, symmetrically distributed, involving the face, especially sparing the medial portion, including the nose, and lower limbs.

In childhood, dry skin (xerosis) becomes more constant than in infancy. Eczematous lesions tend to localise more in folds (neck, elbows, knees) or involve “bastion areas” (hands and wrists, ankles, nipple, retro-auricular fissures), with more widespread flare-ups possible (trunk, limbs). Lichenification predominates over erythema and edema. The subpalpebral folds (Dennie-Morgan sign) are more pronounced.

The validation of SCORAD and POSCORAD on pigmented skin (“black skin”) demonstrated a good correlation between SCORAD assessed by physicians and POSCORAD assessed by patients/parents, indicating that PO-SCORAD correlates well with SCORAD for black skin patients with AD, requiring no specific level of education.

The study's limitations include the difficulty for patients/parents in precisely assessing symptom severity, particularly xerosis and oozing/crusts, with a tendency to underestimate symptom severity (edema and erythema) and overestimate scratching lesions and lichenification. Evaluating erythema, particularly in the dark-skinned patients, is challenging.

The clinical expression of eczema in Africa features a high frequency of lichenification and papular presentation or neck involvement, significant complication risks due to poor hygiene and the use of inappropriate local treatments, and the potential for misdiagnosing the disease in adults (Video 2).

Supplementary material 3: Pr Ousmane FAYE - Clinical Specificities of Atopic Dermatitis in Africa

Speaker: Fahafahantsoa RAPELANORO RABENJA, Head of the Department of Dermatology, Faculty of Medicine - Antananarivo University, Madagascar.

In Madagascar, AD affects 5.6% of those under 15 and 0.5% of adults.

This chronic inflammatory dermatosis is characterised by recurrent itching episodes and a strong impact on patients’ quality of life. The first consultation (at the time of diagnosis) could be conducted by general practitioners, pediatricians, and sometimes dermatologists.

The organisation of AD care in the Department of Dermatology includes assessing the severity of the disease (SCORAD, EASI) and implementing specific medical file treatments, initiation of treatment (topical and systemic), and offering therapeutic education either during personal consultations or collectively. Personalised information about AD is provided to patients, particularly regarding local treatment options, quantity (Finger Tip Unit), timing, lesion application, and flare-up detection (Video 3).

Supplementary material 4: Fahafahantsoa RAPELANORO RABENJA - Organization of Care During Atopic Dermatitis: Journey of Patients with Atopic Dermatitis in Madagascar

Speaker: Rachel OGOLA, President of the Eczema Society of Kenya.

In Kenya, eczema treatment and medicines are prohibitively expensive, and patients struggle to afford expert consultation. Medicines are often unavailable, relying on creams and imported medicines, which are heavily taxed and face import access rights challenges. Insurance companies rarely cover most patient medications and treatment regimens.

The government largely ignores skin diseases, focusing instead on tropical diseases. Due to the absence of therapeutic guidelines in Africa, reliance on European and Asian guidelines is necessary.

The perception that treatment regimens for atopic eczema are complex and concerns about the safety of most treatments, especially corticosteroids, disrupt eczema treatment.

Cultural beliefs, illiteracy, and stigma lead to poor medical adherence due to inadequate support and management. The rarity of clinical trials on black African skin means products are not tailored to this demographic.

Among the unfavourable factors are poor infrastructure, lack of clean and safe water, and air pollution. There's also a lack of resources and training tools.

Among the wishes are intensifying continuing professional education for skin experts, particularly on new drugs and emerging technologies for atopic eczema treatment, more tools, resources, and information about atopic eczema, and the development of specific treatment guidelines. In 2023, Africa still depends on guidelines developed for Europe and Asia. Pharmaceutical companies are urged to conduct more clinical trials and develop affordable drugs for low-income countries (Video 4).

Supplementary material 5: Ms. Rachel OGOLA - Therapeutic Constraints for Patients with Atopic Eczema

Speaker: Fanny Sentenac, Expert Patient, Toulouse, France.

During the treatment of AD, therapeutic failure is common. The joint intervention of a patient and a doctor was chosen to shed light on the often divergent positions between patients and doctors.

Patients need to recognise that their skin condition is a specific illness (not just a rash, allergy, or dryness) but a chronic condition requiring long-term management. The causes are genetic, and patients must differentiate between “causes” and “aggravating factors.” Moreover, “natural” or “bio” products are not completely harmless; their safety depends on how, why, and when they are used.

Patients must understand their condition to treat symptoms, identify aggravating factors, and prevent flares. Often, no change in condition despite efficient medication is due to a lack of understanding of the condition and fear of treatments. Patients’ expectations are not always realistic: they seek complete and definitive healing through simple actions or short-term medication and hope to identify THE cause of eczema to eliminate it and find a medication that is effective, easy to use, and side-effect-free. Reality demands long-term management and a partnership between the patient and the doctor to control the disease, with patients playing an active role.

Therapeutic failure is common in the treatment of AD. The dual perspective of a patient and a doctor helps highlight the often significant gap between patients and doctors. Doctors have limited consultation time, leading to inadequate attention to patients’ needs and expectations. The healthcare provider's posture—empathy, listening, and systematic detection of corticophobia—is crucial. Patient/parent education and demonstrations are also important.

Supplementary material 6: Fanny SENTENAC – From the patient's perspective.

Speaker: Henrique ISHII, M.Sc, D.Sc, Brazilian Atopic Dermatitis Association, Sao Paulo, Brazil.

Eczema presents a mix of itching, skin pain, sleep problems, and treatment failure for those who suffer from it. A satisfaction survey on the treatment of AD conducted in Sao Paulo in 2010 among 93 patients and 107 caregivers revealed that 80% of patients were unsatisfied with their eczema treatment.

A study carried out in 2016 with 119 children showed that 56% were dissatisfied with the treatment, and 40% had not been able to adhere to the therapeutic recommendations. Their families expressed a need for psychological support and reliable information for better involvement in the treatment.

Two international surveys conducted in 2020 and 2022 by 1678 patients showed the following results: living without itching, quickly obtaining more beautiful skin, regaining control of the disease, improving health, and finally no longer suffering from skin issues.

All these results highlighted both the impact of eczema on quality of life, the intensity of unmet needs, and the low benefits of AD treatments felt by patients (Video 6).

Supplementary material 7: Henrique ISHII - Eczema Seen by Patients: What Are the Expectations of Patients? Talking About Your Eczema to Other Patients and Caregivers

Speaker: Leonardo FARIA, Senior Dermatology Resident, University of Sao Paulo, Brazil.

A young Brazilian teenager shared his experience living with eczema.

“During my childhood, my life was centered around allergies: Do you have an allergy? What are you allergic to? Eventually, I was allergic to life.”

“During consultations, my mother was the only one who spoke, and I felt like a terminally ill patient at the doctor's office.”

“I had to hide certain things from my mother because I knew it would upset her. Her final argument was: It will be better when you are older!”

“During adolescence, the story repeats itself: don't do that, don't eat that, don't swim.”

Eventually, the patient environment changed as he grew older: information about the treatment became clearer, empathy with the doctor became possible, and psychological support from other patients played a positive role.

Supplementary material 8: Dr Leonardo Faria - The Case of the Recalcitrant Teenager.

Speaker: Pr Jean-Francois STALDER, University of Nantes (France).

Among the main obstacles to the effective management of eczema, the discrepancy between the needs expressed by patients and their families and the reduced availability of doctors is an essential factor.

This situation affects not only a restricted group of people but also both developed countries and countries with fewer medical resources.

The explosion of social networks exemplifies the growing information needs expressed by patients, highlighting the gap between few trained and available caregivers and the numerous patients hungry for information.

Without answers to their questions, patients turn to all available information, increasing their dismay and leading to poor adherence to their treatments.

What exists today? Many achievements have attempted to use techniques. A Google search shows more than 27 million hits using digital tools in eczema care.

In fact, few applications have been created based on the real needs expressed by patients. Many experiences of shared tools have been developed, and due to their number, it is impossible to mention them all.

The Eczema Care Plus application is a new original app designed to help the atopic patient, created from the needs expressed by an international working group composed of patients and caregivers (doctors, nurses, pharmacists, psychologists). Eczema Care Plus is useful for patients: assessing the severity of the disease, visualising its evolution, and sharing patient experience with their doctor to get more personalised recommendations and learn more about eczema.

Eczema Care Plus is also useful for healthcare professionals, saving time during consultations by using a summary written by the patient, showing the difficulties faced by patients, and sharing patient management.

By following the evolution of symptoms, the app allows the patient to better understand his/her eczema and help adjust the treatment (Video 8).

Speaker: Peter LIO, MD, FAAD, Northwestern University Chicago Integrative Eczema Center, CHICAGO, IL, USA.

“All truth passes through three stages. First, it is ridiculed. Second, it is violently resisted. Third, it is accepted as self-evident.”—Arthur Schopenhauer

AI's journey in medicine began in 1950 when mathematician and computer scientist Alan Turing described a simple test (later called the “Turing test”) to determine whether computers were capable of human intelligence.

In 1956, John McCarthy defined AI as “the science and engineering of making intelligent machines.” Since then, this vast field has expanded considerably, and its applications are numerous today.

Large Language Models like Chat-Generative Pre-Trained Transformer (ChatGPT) have become a new source of information for patients and caregivers. ChatGPT is a conversational chatbot trained on a wide range of Internet sources that uses reinforcement learning from human user feedback. ChatGPT overtook Instagram for the fastest-growing user base: 1 million users in the first 5 days after launch, reaching 100 million users by January 2023!

However, limitations have been highlighted as a discrepancy with reality: we speak of the problem of confabulation or hallucination. By trying to appear as human as possible, ChatGPT can appear equally confident even if the answer is uncertain or incorrect. This makes it difficult to measure the reliability of responses and raises questions about its clinical use.

A recent study evaluated ChatGPT's ability to provide empathetic, quality responses to patient questions posted on a social media forum compared to those obtained from a physician. ChatGPT responses were significantly higher in quality and empathy compared to physician responses.

This suggests that AI is a useful tool in communication between caregivers and patients and could provide answers to problems related to the administrative burden of doctors. In 2017, clinicians spent 355 min (5.9 h) per day on 11.4 h of work in EHR per weekday, and Inbox management accounted for an additional 85 min (23.7%).

This already untenable situation continues to worsen for many… Overwhelmed by questions from patients who find it increasingly difficult to obtain reliable and personalised answers, we recently tested 99 questions most frequently asked by AD patients on the most current model, ChatGPT-4. Questions included those regarding the etiology, management, and consequences of AD. ChatGPT responses were independently evaluated by a group of 11 international dermatologists with expertise in therapeutic patient education.

The accuracy of the ChatGPT responses was judged according to a qualitative Likert scale ranging from 0 (wrong response) to 10 (excellent response). In total, the average of the responses provided by ChatGPT is 9.75/10, confirming the excellence of the tool in terms of chatbot… (J Eur Acad Dermatol Venereol. 2024;00:1–5.)

AI opens up new horizons for us that are incredibly exciting and perhaps a little scary. AI can definitely help us communicate better with our patients and integrate the range of therapeutic education tools (Video 9).

All persons who meet authorship criteria are listed as authors, and all authors certify that they have participated sufficiently in the work to take public responsibility for the content, including participation in the concept, design, analysis, writing, revision, and final approval of the manuscript.

The authors declare no conflicts of interest.

The parents/guardians of minor patients have given written informed consent for their child's participation in the study, as well as for the use of their child's deidentified, anonymized, aggregated data, and case details (including photographs) for publication. Adult patients have given written informed consent for participation in the study and the use of their deidentified, anonymized, aggregated data and their case details (including photographs) for publication. Ethical approval: Not applicable.