Unified Care for Fragile-Skin Patients
Research By: Anne Lucky, MD
Post Date: August 10, 2024 | Publish Date: August, 2024
Dermatology | Top Scientific Achievement
A research team including experts from Cincinnati Children’s has developed the first consensus-based, hands-on guidelines for hospital care of children with epidermolysis bullosa (EB)—a rare genetic disorder that causes extreme skin fragility and blistering.
The recommendations were detailed in August 2024 in the Journal of the American Academy of Dermatology. The guidelines were developed using a modified Delphi process, bringing together insights from dermatologists, nurses, neonatologists, anesthesiologists, and family caregivers. Their work seeks to standardize inpatient practices for both newborns and older children with EB.
The group identified 10 essential areas for EB hospital management, including environmental preparation, handling and clothing, skin cleansing, dressing changes, patient monitoring, securing lines, oral/nutritional/gastrointestinal management, pain and itch control, procedure care, and psychosocial support. The goal is to ensure compassionate, trauma-free care—from protecting fragile skin during procedures to creating comfort through thoughtful dressing and pain management strategies.
“Hospital team members benefit from consensus-derived guidelines to care for patients with fragile skin,” says Anne Lucky, MD, a dermatologist at Cincinnati Children’s and a co-author. “Our study provides the first expert-based consensus guidelines for neonatal and post-neonatal care of EB in the inpatient setting in North America.”
The recommendations are designed to adapt to individual patient needs, encouraging collaboration between care teams and families. They also highlight the importance of involving pain and palliative care specialists early, protecting skin during procedures, and addressing emotional well-being alongside physical health.
Next, the research consortium plans to expand this work with visual training tools and future consensus statements for outpatient and home-based care to further improve patient outcomes and clinician confidence.
About the study
Cincinnati Children’s co-authors also included Beth Moeves, APRN-CNP; Nichole Halliburton, APRN-CNP; and Emily Gorell, DO, MS. Collaborators represented Northwestern University, Children’s Hospital of Chicago, Florida International University Herbert Wertheim College of Medicine, Columbia University College of Physicians and Surgeons, the University of Massachusetts, the Children’s Hospital of Philadelphia, Instituto Nacional de Pediatría, University of Texas at Ausstin Dell Children’s Medical Center, Cincinnati Children’s Hospital Medical Center, University of Montreal, University of Toronto, Ann & Robert H. Lurie Children’s Hospital of Chicago, University of California-San Diego, Rady Children’s Hospital, University of Colorado School of Medicine, Washington University School of Medicine.
This research was funded by the Society for Pediatric Dermatology and the Pediatric Dermatology Research Alliance.
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| Original title: | Inpatient management of epidermolysis bullosa: Consensus-based hands-on instructions for neonates and postneonates |
| Published in: | Journal of the American Academy of Dermatology |
| Publish date: | August, 2024 |
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The Research Horizons blog features news and insights about the latest discoveries and innovations developed by the scientists of Cincinnati Children's. This blog does not provide medical advice, diagnosis, or treatment. Email researchnews@cchmc.org with questions or ideas.
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