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Table of Contents
Year : 2022  |  Volume : 26  |  Issue : 1  |  Page : 13-17

Skin cleansing and wound care practice in patients with epidermolysis bullosa: A cross-sectional study

1 Department of Dermatology, Imam Mohammad Ibn Saud Islamic University, Riyadh, Saudi Arabia
2 College of Medicine, Imam Mohammad Ibn Saud Islamic University, Riyadh, Saudi Arabia

Date of Submission17-Nov-2021
Date of Acceptance02-Apr-2022
Date of Web Publication30-Jun-2022

Correspondence Address:
Dr. Ashjan Alheggi
Department of Dermatology, College of Medicine, Imam Mohammad Ibn Saud Islamic University, Riyadh
Saudi Arabia
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Source of Support: None, Conflict of Interest: None

DOI: 10.4103/jdds.jdds_99_21

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Background: Epidermolysis bullosa (EB) is a group of genodermatoses characterized by fragile skin that may progress to erosions, blisters, and open nonhealing wounds. Understanding home skincare practices and topical products use among patients with EB is necessary to optimize management outcomes and quality of life. Purpose: The purpose of this study was to assess home bathing, skincare routines, and topical product used in patients with EB. Methods: Cross-sectional, observational study data were collected from patient-directed questionnaires in the Saudi EB registry. Data collection and statistical analyses were conducted using Microsoft Excel and SPSS-V.25. Results: Thirty-seven patients (62% males; mean age 14; [2 months–36] years) were enrolled. EB subtypes included EB simplex (n = 13), junctional EB (n = 6), and dystrophic EB (n = 13); five patients had unknown type. Twenty-one patients (57%) dislike multilayer wound dressings and/or find that they exacerbate the blistering during summer and in hot climates. Almost one-quarter of participants reported lancing a few of the intact blisters, and 5.4% did not lance any. Bath additives ranged from barely effective to potentially cytotoxic solutions of vinegar and sodium hypochlorite solution. Around 1/3rd of participants reported the use of topical antibiotics with no alternation or rotation on dirty wounds, and 8.1% of our cohort reported the use of antibiotics on intact skin. Conclusion: Education is needed for EB patients and their families on lancing of blisters and topical antibiotic use, especially in light of increasing antibiotic resistance. Dressing modification for EB patients living in the Gulf region countries, particularly during hot and humid months, may be helpful.

Keywords: Epidermolysis bullosa, skincare, therapy, topical, wound care, wound dressings

How to cite this article:
Alheggi A, Alzakry L, Khunayn RB, Alshareef R, Al-Khalid Y. Skin cleansing and wound care practice in patients with epidermolysis bullosa: A cross-sectional study. J Dermatol Dermatol Surg 2022;26:13-7

How to cite this URL:
Alheggi A, Alzakry L, Khunayn RB, Alshareef R, Al-Khalid Y. Skin cleansing and wound care practice in patients with epidermolysis bullosa: A cross-sectional study. J Dermatol Dermatol Surg [serial online] 2022 [cited 2022 Dec 6];26:13-7. Available from: https://www.jddsjournal.org/text.asp?2022/26/1/13/349437

  Introduction Top

Epidermolysis bullosa (EB) is a group of rare genetically inherited diseases which affects the skin and mucous membranes. It is characterized by mechanical fragility, blister formation, and open nonhealing wounds.[1],[2] Four major types of EB are recognized based on the level of cleavage at the dermal-epidermal junction. These are EB simplex, junctional EB, dystrophic EB (DEB), and kindler EB. Clinical severity varies considerably between EB types and subtypes.[1],[3] Despite its huge impact, there is still no cure for any type of EB. Management is primarily focused on preventive measures, skin, wound assessment, minimize complications, and improve quality of life.[4] Patients with EB are susceptible to persistent chronic wounds, antimicrobial resistance, and the development of squamous cell carcinoma in severe subtypes.[4],[5] Understanding home skincare practices and topical products use among patients with EB is necessary to optimize the patient's management outcome and quality of life. There are limited data on home skincare practices and topical products used among patients with EB. We conducted a cross-sectional, observational single-center study to assess EB patients' home bathing and skin care routines.

  Methods Top

This was an observational cross-sectional study using data retrieved from the Saudi EB registry database. The diagnosis was based on the clinical presentation, family history, and whenever samples were available, on mutation analysis. In this survey, all registered patients suffering from any form of EB between February 2020 and September 2020 were invited to participate. NonSaudi patients who left the country or those who died were excluded from the study. Information was collected from patients, or in the case of a minor, from their primary caregiver, through an online questionnaire. All patients and caregivers were informed about the study objective, data confidentiality and were asked to indicate their understanding of the study conditions and agreement to participate. The study was approved by the Institutional Review Board of Imam Mohammad Ibn Saud University.

The following demographic data items were collected for each patient: age, gender, type of EB, and age at diagnosis. Data relating to skin cleansing, bath additives, topical product use, and dressing changes to best reflect the prior 4 weeks were collected [[Table S1]; see Supporting information]. Data collection and statistical analyses were conducted using Microsoft Excel program version 2205 and SPSS Version 25.0.(IBM Corp., Armonk, NY, USA).

  Results Top

Thirty-seven patients, with 23 males (62%) and 14 females (38%), were enrolled. Patient age ranged from 2 months to 36 years of age with a mean age of 14 years, representing a range of EB types [Table 1].
Table 1: Characteristics of enrolled patients (n=37)

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Skin cleansing

Most respondents cleansed their skin every other day (22 [59%] [Figure 1]a). The most common cleansing routine was bathing or showering (20 [54%] and 18 [49%], respectively, [Figure 1]b). Seven patients (19%) were cleansed with wipes and five (14%) patients employed more than one method of skin cleansing.
Figure 1: (a) Frequency of skin cleansing per week (n = 37 responses). Frequency of skin cleansing taken per week showed that most participants (59%) cleansed their skin every other day while (11%) of patients cleansed their skin daily. (b) Method of skin cleansing demonstrated a bimodal distribution (N = 37 responses); the most common cleansing routine was bathing or showering 20 (54%) and 18 (49%), respectively. Followed by others (cleansing wipes) 7 (19%)

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Skin cleansing additive use

Approximately half the patients indicated that they regularly used additives in baths, rinses, or compresses as part of their skin cleansing routine. Of participants who reported using an additive in their cleansing water, 11 (50%) added gentle cleanser, 9 (41%) bleach, 3 (14%) vinegar, 3 (14%) antiseptics, and 2 (9%) a salt additive [Figure 2]a. Eight (36%) patients added only gentle cleanser, seven (32%) patients added only bleach, two (9%) only antiseptic, and one (4%) only vinegar. No patient indicated the addition of only salt to their cleansing water, and four (18%) answered that they used more than one additive. Thirty-five (95%) patients reported being unaware or unsure of the effect of the saltwater baths. Fifteen patients (41%) reported cleansing their skin in plain water only [Figure 2]b.
Figure 2: (a) Cleansing additives (N = 22 responses). The most common reported additive use in cleansing water was gentle cleanser (11 [50%]), followed by bleach (9 [41%]). (b) Cleansing additives used by patients

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Patients reported wide ranges in the concentration of additives used, adding 34 and 500 g of salt per 60 and 30 l of water, corresponding to concentrations of 0.05% and 1.6% NaCl solution, respectively. Using a starting concentration of 5.25% sodium hypochlorite in household bleach, patients reported adding 10 or 15 ml of bleach per 30 l of water and 30, 62, or 250 ml of bleach per 60 l of water, corresponding to concentrations of 0.001 or less and 0.001, 0.002, and 0.01 sodium hypochlorite, respectively. Those who added vinegar reported a range of 125 and 500 ml per 30 l of water, corresponding to concentrations of 0.006% to 0.08% assuming a starting concentration of 5% acetic acid in household vinegar.

Topical product use on wounds

Patients were queried regarding their use of topical products on their intact skin and wounds. The most used topicals were emollients and topical antibiotics, with more than two-thirds of participants indicating their use. Six patients (16%) did not use any topical products and nine (24%) used two or more different antibiotics [Figure 3]a. Fucidin was the most used topical antibiotic (22 respondents (60%), followed by mupirocin (6 [16%]) and Betadine (5 [14%]). Bacitracin and polysporin were less commonly reported. Three respondents (8%) used silver-containing products, and one (3%) patient indicated the use of nonsterile table honey [Figure 3]b. Three patients (8%) reported the use of antibiotics on intact skin. Eleven patients (30%) reported the use of topical antibiotics with no alternation or rotation on dirty wounds. Other products and antimicrobials reported included shea butter, silver sulfadiazine, polyhexanide, Rigenase (wheat extract), beta-sitosterol, corn flour, topical steroids, and fenugreek with rhatany-based herbal preparation.
Figure 3: (a) Topical product use by patients, other category included polyhexanide, beta-sitosterol, silver sulfadiazine, Rigenase (wheat extract), fenugreek with rhatany-based herbal preparation (b) Topical product use by patients. Fucidin was the most commonly used topical antibiotic (22 respondents [60%]), followed by mupirocin (6 [16%]) and betadine (5 [14%])

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Dressing changes

Frequency of dressing changes varied considerably. Eleven patients (30%) reported dressing changes 3–4 times per week and nine patients (24%) did so daily. Daily dressing changes were most performed by DEB (6/9 [67%]. Duration of wound dressing changes on average “30–60 min.” Longer than 2 h dressing change time was most reported by DEB (3/4 [75%]). IIndependent of the EB subtype, most patients required assistance during dressing changes. Eighteen (49%) required the assistance of one person and 11 (30%) required the assistance of two or more people [[Table S2]; see Supporting information]. Nine patients (24%) reported lancing a few of the intact blisters and two (5%) did not lance any. Twenty-one patients (57%) dislike dressing layers and/or find they exacerbate the blistering during summer and in hot climates.

  Discussion Top

Regular bathing, particularly with the use of additives, can be helpful to reduce bacterial colonization and pain associated with EB wounds.[4],[6] Adding bleach baths might be helpful in patients with atopic dermatitis as it may lessen the bacterial burden on the skin.[7],[8],[9] Diluting 5–10 ml of household bleach in 5 L of bathwater, resulting in a final concentration of 0.005% of sodium hypochlorite, has been recommended.[4] The diluted bleach should be washed off thoroughly after the bath to prevent itch.[6] In our study, the reported concentration of sodium hypochlorite ranged from a nonbactericidal (0.001%) to potentially cytotoxic to human cells (0.01%).

A dilute acetic solution can be used to reduce recurrent Gram-negative infections: e.g., Pseudomonas.[6],[10] The white vinegar 5% can be diluted by combining 0.5–1 liter in 10 liters of water, resulting in a concentration of approximately 0.25% acetic acid.[4] The amount of vinegar patients reported adding, range of concentrations of 0.006%–0.08% which is well below the target concentration. Although many of our patients were unaware of or unfamiliar with the effect of saltwater baths, saltwater baths can help reduce bathing-associated pain and stinging possibly due to the osmotic effect.[11],[12] Addition of approximately 9 g of table salt to 1 liter of water to create 0.9% sodium chloride isotonic solution is recommended.[6],[12] Our patients reported amounts that would result in concentrations ranging from hypotonic (0.05%) to hypertonic NaCl solution (1.6%). Including education on the proper concentration of cleansing additives in the information brochures may be helpful.

Critical colonization or infection may occur in all types of EB, especially in severe subtypes.[13] Staphylococcus aureus, Pseudomonas aeruginosa, and Streptococcus pyogenes were the most common colonizers of EB wounds.[14] EB patients may be particularly susceptible to sepsis due to cutaneous infection.[6],[13] Topical antiseptics and antibiotics are often required in critically colonized or infected EB wounds to promote healing.[5],[6] The use of topical antimicrobials should be limited for short periods of time and be rotated to prevent antibiotic resistance.[4],[5] In the prior studies, mupirocin resistance was most prevalent.[15],[16] In the current study, fucidin was the most frequently reported topical antibiotic, followed by mupirocin and povidone-iodine. Prolonged use of povidone-iodine solution in individuals with EB is not recommended due to skin fragility and pain associated with open wounds.[4] In addition, several patients indicated the use of antibiotics without alteration or rotation, and others reported the use of antibiotics on intact skin. Almost a quarter of our EB patients used two or more topical antibiotics. EB consensus guidelines support the use of only medical or gamma irradicated honey to avoid the risk of botulism.[6],[13] The use of silver products for limited period of time and over small surface areas has been advocated.[5],[6],[13] However, few of our EB patients reported using silver-containing products, and one patient used table or nonmedical grade honey. Promoting better adherence to best practice guidelines for topical antimicrobial use, particularly in the era of widespread resistance, may be important.

Dressing choices in EB patients should be individualized depending on patient age, EB subtype, extent of wound lesion, dressing frequency, cost, and availability. Wound healing is best achieved using atraumatic dressing based on the wound characteristics and drainage.[4],[6] In our study, dressing changes of longer than 2 h were most performed by DEB patients. Most of our patients required assistance during dressing changes, regardless of their EB type. Consensus guidelines advise to lance and drain EB blister at its lowest point to limit tissue extension and pain.[6] However, some patients were unaware of the need to lance all intact EB blisters. In our cohort, most of our patients dislike dressing layers, particularly during summer and in hot climates, as they find it exacerbates the blistering and pain. Educating patients and their families in blister care and involvement in EB care may be valuable. Modification in dressing layers may be considered in managing EB patients in the Middle East region, particularly during summer months.

  Conclusion Top

We have found a wide variability in EB patients' home skincare regimens. While individualized care is advisable, a variety of blister care, concentration of cleansing additives, and topical antibiotics are reported. Wound care, control of infection, and optimal nutritional support are crucial aspects of EB holistic care. Although limited by the small number of patients, our EB patients and their families may benefit from standardized education and closer providers supervision in a national EB center to optimize their health and overall quality of life. Efforts to optimize patients' knowledge of lancing of blisters, appropriate dilution of cleansing products, and topical antibiotic use may be helpful. We also suggest possible dressing modifications for EB patients living in the Gulf region countries, particularly during hot and humid months.

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Conflicts of interest

There are no conflicts of interest.

  References Top

Fine JD, Bruckner-Tuderman L, Eady RA, Bauer EA, Bauer JW, Has C, et al. Inherited epidermolysis bullosa: Updated recommendations on diagnosis and classification. J Am Acad Dermatol 2014;70:1103-26.  Back to cited text no. 1
Fine JD, Mellerio JE. Extracutaneous manifestations and complications of inherited epidermolysis bullosa: Part II. Other organs. J Am Acad Dermatol 2009;61:387-402.  Back to cited text no. 2
Has C, Bauer JW, Bodemer C, Bolling MC, Bruckner-Tuderman L, Diem A, et al. Consensus reclassification of inherited epidermolysis bullosa and other disorders with skin fragility. Br J Dermatol 2020;183:614-27.  Back to cited text no. 3
Pope E, Lara-Corrales I, Mellerio J, Martinez A, Schultz G, Burrell R, et al. A consensus approach to wound care in epidermolysis bullosa. J Am Acad Dermatol 2012;67:904-17.  Back to cited text no. 4
El Hachem M, Zambruno G, Bourdon-Lanoy E, Ciasulli A, Buisson C, Hadj-Rabia S, et al. Multicentre consensus recommendations for skin care in inherited epidermolysis bullosa. Orphanet J Rare Dis 2014;9:76.  Back to cited text no. 5
Denyer J, Pillay E, Clapham J. Best practice guidelines for skin and wound care in epidermolysis bullosa: An international consensus. Int Wound J 2017;1-58.  Back to cited text no. 6
Wollenberg A, Barbarot S, Bieber T, Christen-Zaech S, Deleuran M, Fink-Wagner A, et al. Consensus-based European guidelines for treatment of atopic eczema (atopic dermatitis) in adults and children: Part I. J Eur Acad Dermatol Venereol 2018;32:657-82.  Back to cited text no. 7
Huang JT, Abrams M, Tlougan B, Rademaker A, Paller AS. Treatment of Staphylococcus aureus colonization in atopic dermatitis decreases disease severity. Pediatrics 2009;123:e808-14.  Back to cited text no. 8
Chopra R, Vakharia PP, Sacotte R, Silverberg JI. Efficacy of bleach baths in reducing severity of atopic dermatitis: A systematic review and meta-analysis. Ann Allergy Asthma Immunol 2017;119:435-40.  Back to cited text no. 9
Salavastru CM, Sprecher E, Panduru M, Bauer J, Solovan CS, Patrascu V, et al. Recommended strategies for epidermolysis bullosa management in romania. Maedica (Bucur) 2013;8:200-5.  Back to cited text no. 10
Arbuckle HA. Bathing for individuals with epidermolysis bullosa. Dermatol Clin 2010;28:265-6, ix.  Back to cited text no. 11
Petersen BW, Arbuckle HA, Berman S. Effectiveness of saltwater baths in the treatment of epidermolysis bullosa. Pediatr Dermatol 2015;32:60-3.  Back to cited text no. 12
Mellerio JE. Infection and colonization in epidermolysis bullosa. Dermatol Clin 2010;28:267-9, ix.  Back to cited text no. 13
Levin LE, Shayegan LH, Lucky AW, Hook KP, Bruckner AL, Feinstein JA, et al. Characterization of wound microbes in epidermolysis bullosa: Results from the epidermolysis bullosa clinical characterization and outcomes database. Pediatr Dermatol 2021;38:119-24.  Back to cited text no. 14
Singer HM, Levin LE, Garzon MC, Lauren CT, Planet PJ, Kittler NW, et al. Wound culture isolated antibiograms and caregiver-reported skin care practices in children with epidermolysis bullosa. Pediatr Dermatol 2018;35:92-6.  Back to cited text no. 15
Shayegan LH, Levin LE, Galligan ER, Lucky AW, Bruckner AL, Pope E, et al. Skin cleansing and topical product use in patients with epidermolysis bullosa: Results from a multicenter database. Pediatr Dermatol 2020;37:326-32.  Back to cited text no. 16


  [Figure 1], [Figure 2], [Figure 3]

  [Table 1]


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