Skin cleansing and topical product use in patients with epidermolysis bullosa: Results from a multicenter database

Leila H. Shayegan; Laura E. Levin; Eloise R. Galligan; Anne W. Lucky; Anna L. Bruckner; Elena Pope; Irene Lara-Corrales; Karen Wiss; Catherine C. McCuaig; Maria C. Garzon; Lawrence F. Eichenfield; Kristen P. Hook; John C. Browning; Lawrence A. Schachner; Marissa J. Perman; Leslie Castelo-Soccio; Moise L. Levy; Sharon A. Glick; Kimberly D. Morel

doi:10.1111/pde.14102

Skin cleansing and topical product use in patients with epidermolysis bullosa: Results from a multicenter database

Leila H. Shayegan, Laura E. Levin, Eloise R. Galligan, Anne W. Lucky, Anna L. Bruckner, Elena Pope, Irene Lara-Corrales, Karen Wiss, Catherine C. McCuaig, Maria C. Garzon, Lawrence F. Eichenfield, Kristen P. Hook, John C. Browning, Lawrence A. Schachner, Marissa J. Perman, Leslie Castelo-Soccio, Moise L. Levy, Sharon A. Glick, Kimberly D. Morel

Dermatology

Research output: Contribution to journal › Article › peer-review

10 Scopus citations

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.

Original language	English (US)
Pages (from-to)	326-332
Number of pages	7
Journal	Pediatric Dermatology
Volume	37
Issue number	2
DOIs	https://doi.org/10.1111/pde.14102
State	Published - Mar 1 2020

Bibliographical note

Funding Information:
The Epidermolysis Bullosa Clinical Characterization and Outcomes Database is funded jointly by Epidermolysis Bullosa Research Partnership and Epidermolysis Bullosa Medical Research Foundation. Research Electronic Data Capture is supported by Colorado Clinical Translational Science Award grant UL1 TR002535 from the National Institutes of Health/National Center for Advancing Translational Sciences. The following individuals provided significant research support for this study: Kathleen Peoples, University of Colorado Denver; Bret Augsburger, Cincinnati Children's Hospital; Hannah Singer, MD, Columbia University Vagelos College of Physicians and Surgeons; Jenna Borok, MD, Allison Han, MD, and Nicola Natsis, BA, University of California San Diego; and Sarah H. Schwartz, Dell Children's Medical Center. We are grateful and indebted to the patients and their families who participated in this study. We would also like to thank the Pediatric Dermatology Research Alliance for facilitating collaborative multicenter research, as well as Yuan (Vivian) Zhang, MS, and Codruta Chiuzan, PhD, of the Biostatistics, Epidemiology, and Research Design program at Columbia University Irving Medical Center for their statistical support.

Publisher Copyright:
© 2020 Wiley Periodicals, Inc.

Copyright:
Copyright 2020 Elsevier B.V., All rights reserved.

Keywords

epidermolysis bullosa
genodermatoses
quality of life
skin barrier
therapy-topical

Publisher link

10.1111/pde.14102

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Shayegan, L. H., Levin, L. E., Galligan, E. R., Lucky, A. W., Bruckner, A. L., Pope, E., Lara-Corrales, I., Wiss, K., McCuaig, C. C., Garzon, M. C., Eichenfield, L. F., Hook, K. P., Browning, J. C., Schachner, L. A., Perman, M. J., Castelo-Soccio, L., Levy, M. L., Glick, S. A., & Morel, K. D. (2020). Skin cleansing and topical product use in patients with epidermolysis bullosa: Results from a multicenter database. Pediatric Dermatology, 37(2), 326-332. https://doi.org/10.1111/pde.14102

Shayegan, LH, Levin, LE, Galligan, ER, Lucky, AW, Bruckner, AL, Pope, E, Lara-Corrales, I, Wiss, K, McCuaig, CC, Garzon, MC, Eichenfield, LF, Hook, KP, Browning, JC, Schachner, LA, Perman, MJ, Castelo-Soccio, L, Levy, ML, Glick, SA & Morel, KD 2020, 'Skin cleansing and topical product use in patients with epidermolysis bullosa: Results from a multicenter database', Pediatric Dermatology, vol. 37, no. 2, pp. 326-332. https://doi.org/10.1111/pde.14102

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title = "Skin cleansing and topical product use in patients with epidermolysis bullosa: Results from a multicenter database",

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.",

keywords = "epidermolysis bullosa, genodermatoses, quality of life, skin barrier, therapy-topical",

author = "Shayegan, {Leila H.} and Levin, {Laura E.} and Galligan, {Eloise R.} and Lucky, {Anne W.} and Bruckner, {Anna L.} and Elena Pope and Irene Lara-Corrales and Karen Wiss and McCuaig, {Catherine C.} and Garzon, {Maria C.} and Eichenfield, {Lawrence F.} and Hook, {Kristen P.} and Browning, {John C.} and Schachner, {Lawrence A.} and Perman, {Marissa J.} and Leslie Castelo-Soccio and Levy, {Moise L.} and Glick, {Sharon A.} and Morel, {Kimberly D.}",

note = "Funding Information: The Epidermolysis Bullosa Clinical Characterization and Outcomes Database is funded jointly by Epidermolysis Bullosa Research Partnership and Epidermolysis Bullosa Medical Research Foundation. Research Electronic Data Capture is supported by Colorado Clinical Translational Science Award grant UL1 TR002535 from the National Institutes of Health/National Center for Advancing Translational Sciences. The following individuals provided significant research support for this study: Kathleen Peoples, University of Colorado Denver; Bret Augsburger, Cincinnati Children's Hospital; Hannah Singer, MD, Columbia University Vagelos College of Physicians and Surgeons; Jenna Borok, MD, Allison Han, MD, and Nicola Natsis, BA, University of California San Diego; and Sarah H. Schwartz, Dell Children's Medical Center. We are grateful and indebted to the patients and their families who participated in this study. We would also like to thank the Pediatric Dermatology Research Alliance for facilitating collaborative multicenter research, as well as Yuan (Vivian) Zhang, MS, and Codruta Chiuzan, PhD, of the Biostatistics, Epidemiology, and Research Design program at Columbia University Irving Medical Center for their statistical support. Publisher Copyright: {\textcopyright} 2020 Wiley Periodicals, Inc. Copyright: Copyright 2020 Elsevier B.V., All rights reserved.",

year = "2020",

month = mar,

day = "1",

doi = "10.1111/pde.14102",

language = "English (US)",

volume = "37",

pages = "326--332",

journal = "Pediatric Dermatology",

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number = "2",

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TY - JOUR

T1 - Skin cleansing and topical product use in patients with epidermolysis bullosa

T2 - Results from a multicenter database

AU - Shayegan, Leila H.

AU - Levin, Laura E.

AU - Galligan, Eloise R.

AU - Lucky, Anne W.

AU - Bruckner, Anna L.

AU - Pope, Elena

AU - Lara-Corrales, Irene

AU - Wiss, Karen

AU - McCuaig, Catherine C.

AU - Garzon, Maria C.

AU - Eichenfield, Lawrence F.

AU - Hook, Kristen P.

AU - Browning, John C.

AU - Schachner, Lawrence A.

AU - Perman, Marissa J.

AU - Castelo-Soccio, Leslie

AU - Levy, Moise L.

AU - Glick, Sharon A.

AU - Morel, Kimberly D.

N1 - Funding Information: The Epidermolysis Bullosa Clinical Characterization and Outcomes Database is funded jointly by Epidermolysis Bullosa Research Partnership and Epidermolysis Bullosa Medical Research Foundation. Research Electronic Data Capture is supported by Colorado Clinical Translational Science Award grant UL1 TR002535 from the National Institutes of Health/National Center for Advancing Translational Sciences. The following individuals provided significant research support for this study: Kathleen Peoples, University of Colorado Denver; Bret Augsburger, Cincinnati Children's Hospital; Hannah Singer, MD, Columbia University Vagelos College of Physicians and Surgeons; Jenna Borok, MD, Allison Han, MD, and Nicola Natsis, BA, University of California San Diego; and Sarah H. Schwartz, Dell Children's Medical Center. We are grateful and indebted to the patients and their families who participated in this study. We would also like to thank the Pediatric Dermatology Research Alliance for facilitating collaborative multicenter research, as well as Yuan (Vivian) Zhang, MS, and Codruta Chiuzan, PhD, of the Biostatistics, Epidemiology, and Research Design program at Columbia University Irving Medical Center for their statistical support. Publisher Copyright: © 2020 Wiley Periodicals, Inc. Copyright: Copyright 2020 Elsevier B.V., All rights reserved.

PY - 2020/3/1

Y1 - 2020/3/1

N2 - 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.

AB - 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.

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KW - genodermatoses

KW - quality of life

KW - skin barrier

KW - therapy-topical

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Skin cleansing and topical product use in patients with epidermolysis bullosa: Results from a multicenter database

Abstract

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