Leila H Shayegan1, Laura E Levin2, Eloise R Galligan1, Anne W Lucky3, Anna L Bruckner4, Elena Pope5, Irene Lara-Corrales5, Karen Wiss6, Catherine C McCuaig7, Maria C Garzon8, Lawrence F Eichenfield9, Kristen P Hook10, John C Browning11, Lawrence A Schachner12, Marissa J Perman13, Leslie Castelo-Soccio13, Moise L Levy14,15, Sharon A Glick16, Kimberly D Morel8. 1. Columbia University Vagelos College of Physicians and Surgeons, New York, New York. 2. Department of Dermatology, Columbia University Irving Medical Center, New York, New York. 3. Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio. 4. Departments of Dermatology and Pediatrics, University of Colorado School of Medicine, Aurora, Colorado. 5. Section of Dermatology, Division of Paediatric Medicine, Hospital for Sick Children, Toronto, Ontario, Canada. 6. Division of Dermatology, Department of Medicine, University of Massachusetts Medical School, Worcester, Massachusetts. 7. CHU Sainte-Justine, University of Montreal, Montreal, Quebec, Canada. 8. Departments of Dermatology and Pediatrics, Columbia University Irving Medical Center, New York, New York. 9. Departments of Pediatrics and Dermatology, University of California San Diego, San Diego, California. 10. Department of Dermatology, University of Minnesota Medical School, Minneapolis, Minnesota. 11. Department of Pediatric Dermatology, Children's Hospital San Antonio, San Antonio, Texas. 12. Department of Dermatology, University of Miami Miller School of Medicine, Miami, Florida. 13. Section of Pediatric Dermatology, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania. 14. Departments of Pediatrics and Medicine (Dermatology), Dell Medical School, University of Texas, Austin, Texas. 15. Department of Pediatric Dermatology, Dell Children's Medical Center, Austin, Texas. 16. Department of Dermatology, State University of New York Downstate Medical Center, Brooklyn, New York.
Abstract
BACKGROUND/ OBJECTIVES: Epidermolysis bullosa (EB) comprises a group of inherited skin blistering diseases. There is currently no cure, and management includes skin protection and prevention of infection. To date, there has been no systematic investigation of home skin care practices among EB patients on a multicenter scale. METHODS: This cross-sectional, observational study included data collected from patients with EB enrolled in the Epidermolysis Bullosa Characterization and Clinical Outcomes Database (EBCCOD) who provided answers to a patient-directed questionnaire between January 1, 2017, and December 31, 2017. RESULTS: Of 202 respondents, 130 (64.4%) had dystrophic EB, 51 (25.2%) had EB simplex, 21 (7.4%) had junctional EB, 3 (1.5%) had Kindler syndrome, and 3 (1.5%) had an unspecified subtype. Seventy-eight patients reported cleansing in plain water only (39%). Of those who used an additive in their cleansing water, 75 (57%) added salt, 71 (54%) added bleach, 36 (27%) added vinegar, and 34 (26%) endorsed the use of an "other" additive (multiple additives possible). Reported concentrations of additives ranged widely from 0.002% sodium hypochlorite and 0.002% acetic acid solutions, which are thought to have negligible effects on microbes, to 0.09% sodium hypochlorite and 0.156% acetic acid, concentrations shown to be cytotoxic. One hundred eighty-eight patients answered questions regarding topical product use (93%). Of those, 131 reported topical antimicrobial use (70%). Mupirocin and bacitracin were the most commonly reported topical antibiotics (59, 58 [31.4%, 30.9%], respectively). CONCLUSIONS: These findings highlight the variety of skin care routines and frequent use of topical antimicrobials among EB patients and have potential implications for antibiotic resistance. The reported range of bleach and vinegar additives to cleansing water, including cytotoxic concentrations, emphasizes the need for clear and optimized skin cleansing recommendations.
BACKGROUND/ OBJECTIVES:Epidermolysis bullosa (EB) comprises a group of inherited skin blistering diseases. There is currently no cure, and management includes skin protection and prevention of infection. To date, there has been no systematic investigation of home skin care practices among EB patients on a multicenter scale. METHODS: This cross-sectional, observational study included data collected from patients with EB enrolled in the Epidermolysis Bullosa Characterization and Clinical Outcomes Database (EBCCOD) who provided answers to a patient-directed questionnaire between January 1, 2017, and December 31, 2017. RESULTS: Of 202 respondents, 130 (64.4%) had dystrophic EB, 51 (25.2%) had EB simplex, 21 (7.4%) had junctional EB, 3 (1.5%) had Kindler syndrome, and 3 (1.5%) had an unspecified subtype. Seventy-eight patients reported cleansing in plain water only (39%). Of those who used an additive in their cleansing water, 75 (57%) added salt, 71 (54%) added bleach, 36 (27%) added vinegar, and 34 (26%) endorsed the use of an "other" additive (multiple additives possible). Reported concentrations of additives ranged widely from 0.002% sodium hypochlorite and 0.002% acetic acid solutions, which are thought to have negligible effects on microbes, to 0.09% sodium hypochlorite and 0.156% acetic acid, concentrations shown to be cytotoxic. One hundred eighty-eight patients answered questions regarding topical product use (93%). Of those, 131 reported topical antimicrobial use (70%). Mupirocin and bacitracin were the most commonly reported topical antibiotics (59, 58 [31.4%, 30.9%], respectively). CONCLUSIONS: These findings highlight the variety of skin care routines and frequent use of topical antimicrobials among EB patients and have potential implications for antibiotic resistance. The reported range of bleach and vinegar additives to cleansing water, including cytotoxic concentrations, emphasizes the need for clear and optimized skin cleansing recommendations.
Authors: James A Feinstein; Anna L Bruckner; Benjamin Chastek; Amy Anderson; Juan Roman Journal: Orphanet J Rare Dis Date: 2022-09-29 Impact factor: 4.303
Authors: Laura E Levin; Leila H Shayegan; Anne W Lucky; Kristen P Hook; Anna L Bruckner; James A Feinstein; Susan Whittier; Christine T Lauren; Elena Pope; Irene Lara-Corrales; Karen Wiss; Catherine C McCuaig; Julie Powell; Lawrence F Eichenfield; Moise L Levy; Lucia Diaz; Sharon A Glick; Amy S Paller; Harper N Price; John C Browning; Kimberly D Morel Journal: Pediatr Dermatol Date: 2020-11-28 Impact factor: 1.588