| Secco et al.(1414. Secco IL, Costa T, Moraes EL, Freire MH, Danski MT, Oliveira DA. Nursing care of a newborn with epidermolysis bullosa: a case report. Rev Esc Enferm USP. 2019;53:e03501.) |
Case report/VI |
Brazil/Portuguese |
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The following interventions were found:
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- In necrotic areas: simple coverage with sterile gauze (Rayon) soaked in essential fatty acids and hydrogel;
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- Analgesia at the time of dressing change: intermittent fentanyl, paracetamol and codeine;
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- Weekly change of dressings: covered with polyurethane foam and tubular mesh;
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- Guidance to parents/caregivers regarding care and changing dressings for injuries and the importance of changing positions every 4 hours.
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| Petersen et al.(1717. Petersen BW, Arbuckle HA, Berman S. Effectiveness of saltwater baths in the treatment of epidermolysis bullosa. Pediatr Dermatol. 2015;32(1):60–3.) |
Observational, retrospective study/ III |
United States/ English |
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Salt water baths using the amount of ¼ to 2 cups of salt for a bathtub with a capacity of 35 liters of water (approximate concentration of 0.09% saline solution). There was a reduction in pain (discontinuity of analgesic use) and reduction of skin odor and skin secretion. Treatment may be recommended for all epidermolysis bullosa subtypes, as there was no statistically significant difference between the types of epidermolysis bullosa and all ages (children between 2 months and 13 years of age, research participants).
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| Packard et al.(1818. Packard S. Teaching in Real Time: a model of excellence in nursing care. Newborn Infant Nurs Rev. 2011;11(1):40–2.) |
Case study/VI |
United States/ English |
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Educational instructions:
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- Avoid using adhesive material directly on the skin and/or that causes shear on the skin;
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- Choose using gauze with Vaseline;
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- Change dressings daily or as needed, preferably using Mepitel®;
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- Cleaning with topical liquid, such as ExSept Plus and Alcavis HDC diluted in saline.
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| Kearney et al.(1919. Kearney S, Donohoe A, McAuliffe E. Living with epidermolysis bullosa: daily challenges and health-care needs. Health Expect. 2020;23(2):368–76.) |
Inductive exploratory study/ III |
Wales/English |
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Instructions directed to individual needs (patient and family):
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- Support the management of physical health issues (pain, itching, changing dressings and bathing);
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- Access to community/home services (geographical isolation of specialized services);
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- Specific information of epidermolysis bullosa and psychosocial support (absence of time for other activities and family breakdown);
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- Effective interaction with health professionals (nursing support);
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- Advice on benefits and rights (difficulty dealing with peers).
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| Denyer et al.(2020. Denyer J, Marsh C, Kirsner RS. Keratin gel in the management of epidermolysis bullosa. J Wound Care. 2015;24(10):446–50.) |
Case study/VI |
United Kingdom/English |
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Factors that may compromise the skin recovery process: suboptimal nutrition, anemia, pain, injuries and frequent blisters
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Material used: keratin gel providing epithelialization of the wound margins, causing a reduction in discomfort (change of dressings without analgesia with opioids);
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Gel use provided faster dressing changes, decreased heat, friction and itching.
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| Hachem et al.(2121. 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(1):76.) |
Multicenter consensus/ VII |
France/English |
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Skin care: do not systematically place the newborn in an incubator and/or avoid heat; not using adhesive dressing; use thick padding before applying the cuff to measure blood pressure; put on clothes with few areas of seams; add silicone foam over diapers to reduce friction; regular bath, using soft felt towel; add protection to vulnerable skin spots (e.g., knees and elbows) with soft silicone contact layers; pay attention to friction during handling Wound care: the choice of dressings varies according to injury type and location, for exuding wounds, use hydrofiber and silicone foam dressings; in dry wounds, use non-adhesive and hydrogel soft silicone or hydrocolloid contact layers;
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Proper pain assessment and management are mandatory;
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Nutritional support started early;
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Vaccination schedule should be maintained.
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| Pope et al.(2222. 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(5):904–17.) |
Consensus study/ VII |
Canada/English |
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A care plan for wounds was carried out with techniques for handling and caring for newborns, regarding: care with food; monitoring of hemoglobin levels; assessment of pain parameters; pruritus control for daily activities; foam dressing use (preferably those with padding for bony prominences); wearing clothes without elastics, diapers lined with non-adherent bandage or Barrier Cream or cream with zinc oxide; developing an assessment, location, and treatment plan for wound and pain
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| Schlueer et al.(2323. Schlueer AB, Schwieger-Briel A, Theiler M, Neuhaus K, Schiestl C, Weibel L. Negative pressure wound treatment in a neonate with epidermolysis bullosa simplex severe generalized: a case report. Pediatr Dermatol. 2020;37(6):1218–20.) |
Case report/VI |
Switzerland/English |
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Negative pressure wound treatment (NPWT), VAC® (KCI Medical®) with 75 mmHg suction, used continuously for 8 weeks with weekly dressing changes, was performed with a neonate. Initially, for wound site decontamination, hypochlorite solution (Veriforte®) was used. Hydrophilic polyurethane membrane dressings (PolyMem®) combined with an enzyme alginogel (Flaminal Forte®). To fix the system, a transparent film dressing (Xtrata) was used, which was changed using an adhesive removal spray (Niltac™)
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