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The International Alliance of Dermatology Patient Organizations (IADPO) is a unique global alliance, committed to improving the lives of skin patients worldwide. We nurture relationships with members, partners and all involved in healthcare ─ building dialogue with decision-makers around the globe to promote patient-centered healthcare.

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February 12, 2018

The International Alliance of Dermatology Patient Organizations (IADPO) today published a Position Paper on Atopic Dermatitis (AD) outlining a seven-step plan to better support people living with Atopic Dermatitis, the most common form of Eczema.

 The Position Paper, entitled, “Atopic Dermatitis: A Collective Global Voice for Improving Care” was developed by IADPO following a global round table meeting it convened of clinicians, researchers and patient leaders ─ all known to be key opinion leaders in the international AD community. The round table was held in Ferney-Voltaire, France in September 2017.

Patients with AD experience a complex range of challenges in their daily lives which go above and beyond the painful and visible manifestations of their disease. Atopic Dermatitis is currently not considered a priority for health systems and therefore is universally poorly resourced. As a result, there are a number of negative consequences for the quality of care for patients, including: inadequate training of first-line physicians, a limited number of treatment options for doctors to offer, and a lack of time that doctors are available to spend with their AD patients.

The assembled round table participants recommended a seven-step plan to address this unsatisfactory situation for patients, with the goal of securing greater attention for this disease among all stakeholders and ultimately better outcomes for patients:

  1. Call for international collaboration amongst all stakeholders, led by patient leaders and the International Alliance of Dermatology Patient Organizations (IADPO)
  2. Generation of credible evidence on prevalence, economic costs and impact of disease
  3. A global campaign to raise awareness of the disease and its true impact
  4. Empowerment of patients via improved access to information and support, as well as tools to help in consultations with their physicians
  5. Improved care for patients from both family doctors and specialists so that care is holistic, accessible and includes access to psychological support
  6. Sharing of best practices and guidelines to improve quality of care universally
  7. Continued investment into and timely access to innovative solutions and treatments for disease control.

The round table was organized and hosted by the International Alliance of Dermatology Patient Organizations (IADPO), supported by a joint unrestricted educational grant from Sanofi Genzyme and Regeneron.

Read the Position Paper: https://globalskin.org/images/Publications/AtopicDermatitis.pdf.  

Quotes:

 “I was very proud to take part in this important roundtable and contribute to the resulting Position Paper on Atopic Dermatitis,” said Julie Block, President and CEO of the National Eczema Association.  “Patients with AD face numerous challenges in their daily lives and I see the recommended seven-step plan as a great starting point to creating more awareness of the disease and developing a more empowered patient voice for the future.”

 “It is essential that we look at patients with AD holistically to understand the full burden of this disease. This includes the psychological and social impact which can be extreme for both the patients and their families.,” explained Dr. Christine Bundy, Professor of Behavioural Medicine at Cardiff University. “This message came out strongly during the round table when patient leaders detailed the patient experience.”

 “Empowering AD patients to better manage their disease, and thus improving lives, is an important theme that emerged in the round table process,” said Susanna Palkonen, Director of the European Federation of Allergies and Airways Diseases Patients’ Associations. “This position paper provides a roadmap on how we can take on this challenge."

 “IADPO was very pleased to be able to bring together key stakeholders including patients, researchers and clinicians to discuss the challenges facing patients grappling with Atopic Dermatitis” said Christine Janus, CEO of IADPO.  “We look forward to working with patient organizations and key stakeholders to address the recommendations and build solutions for people living with AD globally.”

 


 

 

Quick Facts: Atopic Dermatitis

  • Atopic dermatitis (AD) is the most common form of eczema. It is currently an incurable, chronic immune-mediated systemic disease with a debilitating effect on 2-10% of adults worldwide [1].
  • Atopic dermatitis is more than ‘just a skin condition’. People living with atopic dermatitis feel its effects – both on their skin (often with a relentless itch, redness, swelling and lesions) and on their well-being (often linked to sleep deprivation, social isolation, symptoms of anxiety and depression, and an overall reduced quality of life). Patients with inadequately controlled atopic dermatitis face the devastating and unpredictable physical and psychological impact of the disease, every day.
  • Moderate-to-severe atopic dermatitis is characterized by painful lesions over large or sensitive parts of the body that can include skin dryness, cracking, redness, crusting and oozing [2] [3]. Intense and persistent itching is one of the most debilitating symptoms, causing long-lasting, extreme pain, with more than 60% of moderate-to-severe patients reporting itch at least 12 hours a day [4].
  • Patients report that 10% of their working time is affected during an exacerbation [5].
  • 57.5% of patients with atopic dermatitis report a decrease of sexual desire, with 36.5% of partners reporting that the appearance of the disease had an impact on their sex life [6].
  • Up to 72% of patients with moderate to severe atopic dermatitis experience atopic comorbidities, including: asthma (approximately 40%), allergic rhinitis (38.5%-51%), allergic conjunctivitis (20%-24%), food allergy (34%), chronic rhinosinusitis (26%) and nasal polyps (13%) [4].

 

Footnotes:

  • 1. World Allergy Organization, “White book on allergy: update 2013”. [Online]. Available: http://www.worldallergy.org/UserFiles/file/WhiteBook2-2013-v8.pdf.
    2. C. Correale, C. Walker and L. Murphy, “Atopic dermatitis, a review of diagnosis and treatment”, Am Fam Physician, vol. 60, no. 4, pp. 1191-1198, 1999.
    3. K. Eyerich, S. Eyerich and T. Biedermann, “The Multi-Modal Immune Pathogenesis of Atopic Eczema”, Trends Immunol, vol. 36, no. 12, pp. 778-801, 2015.
    4. E. Simpson, T. Bieber and L. Eckert, “Patient burden of moderate to severe atopic dermatitis: Insights from a phase 2b clinical trial of Dupilumab in adults”, Am Acad Dermatol, vol. 74, no. 3, pp. 491-498, 2016.
    5. T. Zuberbier, S. Orlow and A. Paller, “Patient perspectives on the management of atopic dermatitis”, J Allergy Clin Immunol, vol. 118, no. 1, pp. 226-232, 2006.
    6. Misery L., Finlay A., and Martin N., “Atopic dermatitis: impact on the quality of life of patients and their partners”, Dermatology, vol. 215, no. 2, pp. 123-129, 2007.

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