PRESS RELEASE – from the Global Patient Initiative to Improve Eczema Care
Global Scorecard Highlights Unmet Needs of Eczema Patients Worldwide And Strategies for Addressing Them
New study finds low treatment satisfaction, poor control of symptoms, high psychosocial burden and shortcomings in patient centered care for eczema patients worldwide.
SANTA BARBARA, Calif., March 28, 2022 – The Global Patient Initiative to Improve Eczema Care (GPIIEC), a partnership of eleven patient organizations, today released a global report card of eczema patient care in eight countries: Australia, Canada, Denmark, France, Italy, Germany, United States, and the United Kingdom. The Initiative is a global collaboration to establish a common “yardstick” to assess the responsiveness of health systems to the needs of patients and their caregivers, and to identify opportunities for improvement.
Eczema is a chronic relapsing inflammatory skin condition that impacts approximately 15% to 20% of children and 1% to 3% of adults globally, resulting in a significant patient burden and high demand on health care systems. A global survey by the GPIIEC that received over 3,200 responses found that patients in every country, and particularly those who live with moderate-to-severe eczema, are struggling to achieve long-term control of their eczema symptoms and report limited satisfaction with current treatments.
Poorly controlled eczema that can’t be fully addressed by existing treatments substantially impacts patients’ health-related quality of life. Based on adult patients’ descriptions of their health, they would give up between 17-36 percent of their remaining life span in order to be restored to perfect health. Key drivers of this detriment in quality of life were the pain and discomfort of eczema and the mental health impacts such as anxiety and depression.
“We have work to do to improve care for people with eczema worldwide. This data helps us see the gaps and know where to focus our attention,” said Marjolaine Hering, with Association Française de l’Eczéma.
Moderate-to-severe eczema is complex and chronic, demanding a high degree of patient involvement in ongoing symptom management. However, training for this role is minimal and patient input into treatment decisions is lacking in almost every country surveyed. Interestingly, shared decision making, defined as asking patients and caregivers about their priorities during a medical visit, was predictive of symptom control. This finding suggests that such involvement may improve medical care and outcomes, and serves as a target for improvement for health systems in each country.
“Through this initiative we are discovering how patients are faring in our country and worldwide and learning from the other patient organizations how to advocate for better medical care and supports for people with eczema,” said Thomas Schwennesen of the Deutscher Neurodermitis Bund in Germany.
About Global Patient Initiative to Improve Eczema Care (GPIIEC)
GPIIEC is a patient organization-led effort to measure the performance of health systems in meeting the needs of people with eczema (atopic dermatitis) and their caregivers using a common methodology to allow for direct comparisons. For more information: www.improveeczemacare.org
About Global Parents for Eczema Research (GPER)
GPER is a grassroots, non-profit organization based in California whose mission is to improve quality of life and reduce suffering for children with moderate to severe eczema and their families. For more information: www.parentsforeczemaresearch.com